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bcjjhh

07-01-2003, 06:38 AM

here are the featured kiddos for July

Name: Joshua
Age: 13 years old
Date of Birth: November 1st, 1989
Main Diagnosis: Becker's Muscular Dystrophy

Mom: Janet
Dad: Donald

Mailing Address:
Joshua M.
P.O. Box 405
Lafayette, GA
30728 - U.S.A.
http://www.makeachildsmile.org/images/03kids/joshua_m_lg.jpg
Joshua's Story
written by mom Janet

Josh was born in November. He weighed only 5 lbs, but had a head full of hair. He is our special Angel from Heaven GOD gave us!

Josh started walking when he was 8 months. When he turned 2 yrs old, his dad and I noticed he walked with his upper body swaying back and forth. We took him to many doctors. They told us he had growing pains and childhood arthritis. His legs would hurt him. When he turned 6 we saw that he couldn't keep up and didn't have balance. When he threw a ball he would fall back and hurt himself. He would get tired easily and didn't have strength to get to the mail box. The doctors kept telling me I was just a worried mom and that he would grow out of it. He got worse and was struggling to run and play, it would brake my heart to hear kids and adults talk and make fun of him. He couldn't even go across the monkey bars! We carried him around. He would fall a lot and couldn't get up without help. I took him to many doctors, test after test and nothing.

Finally the children's doctors got a new doctor in their office, he was from China, Josh was hurting bad one day screaming and nothing helped. So I took him in to this new doctor, he watched Josh walk, sit on the floor and couldn't get up. He said we needed blood tests and that he was pretty sure of what it was. But wouldn't tell me until 2 weeks when the blood work came back, he didn't want us to worry. I Prayed hard those 2 weeks it was awful. Trying to think what it could be, praying it wasn't this or that!

The test was back... when you are healthy your blood count is from 100 to 200 but not over. Josh's blood count was 6000, I almost passed out, Donald's and my heart were just being ripped out, he still didn't give us much information, only that it was Muscular Dystrophy, He sent us to the MDA Clinic where he was looked at and more blood tests were done. Heart specialists, physical therapists ,neurologists, There was more than 12 doctors looking at him that day! I'll never forget what the heart specialists said to us, "Your son has a form of MD this is very bad we have NO cure for this, they suffer and die." He said "choosing between cancer and what your son has I would much rather he had cancer!"

We were in shock, and still are, we haven't had time to grieve or anything. The MDA sent Josh for a muscle biopsy to see what kind he had ,they took a piece of muscle from his leg and sent it to a big hospital in Nashville TN. Several weeks later it came back. They called us in to tell us the results. The doctors lined up around the wall and told us it was Becker's Muscular Dystrophy. This means your muscles have to have dystrophin in them to keep working or they get damaged over time and you get weaker and weaker. Josh had very little dystrophin in his muscles so his muscles will get weaker over time, there is nothing anyone can do, but give pain medication, physical therapy 2 to 4 times a day according to the pain he has.

Joshua had a stroke at the end of last year and now has grandmal seizures. He takes 2 seizures pills a day and pain medication, along with bottles of Motrin, He is slowly getting weaker, it will tear your heart out. He can't keep up with other children and now has trouble getting up steps, He can't open car doors, he can only walk for short periods at a time. He has a motorized wheel chair, but we call it a scooter or he will not sit in it.

Josh now needs braces on his legs. He has good and bad days, but this little Angel of mine is so strong hearted and hardly complains. I can see the hurt in his eyes when he wants so bad to do things or watches in his chair other kids doing things he loves to do and can't. He loves John Wayne or anything western. Josh will not stay with anyone, his muscles in his throat get weak and hard for him to chew and after the stroke he won't go far from his dad and me, so we always have a house full of kids, church, friends, cousins, etc... boys everywhere to play with! He loves to wrestle in the floor with them but it's so scary because of his muscles and bones, one of the boys broke his shoulder and arm in 2 places, it's healed now. I can't stop him, I just pray and make sure they don't get rough with him!

Make-A-Wish granted him a wish, he wanted a hot tub or swimming pool, they said it was too dangerous, so they built him a playground in the back yard, which was disappointing, the ramps were made for walking up and his scooter won't go up and is over 10 feet tall. But we are grateful and thankful for the thought.

The doctors say Josh will need a heart transplant when he gets older or a ventilator to breath and will have a shortened life so please pray for Josh and our family, GOD gives us strength for these special children we have. It's hard at times though, how is a parent suppose to watch their child get sicker?!

Abilities:

See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes, but limited.
Read: Yes.
Use hands: Yes.

Siblings:
sister Laura, age 18
brother Casey, age 17
brother Austin, age 9

Child's Interests:
Josh loves Movies (John Wayne or any westerns), toys, loves animals, arts & crafts!

Sibling's Interests:
Austin loves animals, books, movies, toys and crafts!

bcjjhh

07-01-2003, 06:39 AM

Name: Jimmy (James)
Age: 3 years old
Date of Birth: June 23rd, 2000
Main Diagnosis: Angelman Syndrome

Mom: Cherri
Dad: Michael

Mailing Address:
Jimmy C.
P.O. Box 5207
Kansas City, MO
64131 - U.S.A.
http://www.makeachildsmile.org/images/03kids/jimmy_lg.jpg
Jimmy's Story
written by mom Cherri

While pregnant with Jimmy, I was diagnosed with Polyhydramniosis and the doctor's feared my baby had Down's Syndrome. It didn't matter to me, I was already in love with him. Throughout my pregnancy, I saw a Perinatologist weekly and had non-stress tests bi-weekly. All testing was normal and the doctor's didn't feel Down's Syndrome was a factor.

Jimmy was born with no outward disabilities, although he cried constantly (he was diagnosed with Acid Reflux MUCH later). When Jimmy was 4 months old, we noticed that he was not tracking with his eyes. We were referred to a Vision Science Lab. At 7 months, Jimmy's Pediatrician stated that he was not focusing, had stiff extremities, and was constantly moving. She also mentioned Angelman Syndrome. We were referred to a Developmental Pediatrician. Jimmy's Blood-Urine tests came back normal. The EEG and the MRI came back normal. At 8 months, Jimmy was observed at the Children's Center for the Visually Impaired, it was noticed that Jimmy had delayed motor skills and vision therapy was set up. A few days after that, Occupational and Physical Therapy's were scheduled. Jimmy's Developmental Pediatrician ordered a Chromosome Study.

At 9 months of age, it was confirmed that Jimmy had a slight chromosome 15 deletion resulting in a diagnosis of Angelman Syndrome. Children with Angelman Syndrome are mentally and physically delayed, are epileptic, have an unusual happy demeanor, are non-verbal, have an unusual fascination with water and have severe Sensory Integration issues.

Shortly after, Communication's Therapy was started and just recently, Hippotherapy. Jimmy will be starting school in the fall. That means he will be saying good-bye to the therapists that have worked with him for 2+ years. He also recently received a wheelchair that is a tremendous help and puts him at the rest of the family's level. The worst part is the seizures. We currently have them under control but have to have his blood tested frequently due to the liver damaging potential his seizure medications can cause.

Abilities:

See: Yes.
Hear: Yes.
Talk: No.
Walk: Not yet.
Read: No.
Use hands: Yes.

Siblings:
sister Emily, age 9

Child's Interests:
Jimmy loves music, water, television, books, toys that make noise and toys he can chew.

Sibling's Interests:
Emily likes Yu-Gi-Oh, Harry Potter, Pokemon, teddy bears and Lizzie McGuire.

bcjjhh

07-01-2003, 06:40 AM

http://www.makeachildsmile.org/images/03kids/sophia_lg.jpg
Name: Sophia
Age: 2½ years old
Date of Birth: September 1st, 2000
Main Diagnosis: Neuroblastoma Stage IV

Mom: Diane
Dad: Benjamin

Mailing Address:
Sophia D.
P.O. Box 404
West Bridgewater, MA
02379 - U.S.A.
Sophia's Story
written by mom Diane

Sophia Marie was born 8lbs 1oz the day after I wanted her to be born on. The school cut off is August 31st. She was healthy and beautiful and very feisty. She had turned purple on us one night and was rushed to the hospital at 5 months old and the doctors found nothing wrong and kept her for a few days for observation and it never happened again. She went to Early Intervention when she was 7-9 months old because she would not roll over. She hated being on her belly and refused to roll. She finally did at 9 months and she then learned to crawl and walk at 14 months. At 9 months old Sophia had surgery to remove a Dermoid Cyst from her neck and we were told it was benign. She was also watched for a suspected ganglion cyst on her palm, which I found when she was an infant. All of these things, I've been told have nothing to do with her current illness.

She never complained of pain and was having a wonderful summer in 2002. Beginning of August she had a slight bruise over her right eye and a little swelling. It did not bother her and no one recalled a fall so I ignored it and it faded in a few days. The following weekend I went away with some friends to New York City for fun and came home Sunday and she was fine. Monday morning she had the same bruising on the other eye. I tried to believe that maybe she had bumped herself again, but fear got the best of me and I called her pediatrician, Dr. Paul Schrieber, and the office told me to bring her in. I remember calling my best friend on my way to the appointment and telling her that I knew she had cancer, possibly leukemia. Her doctor looked her over and felt around her belly and sent us for blood work, I dropped the kids off to a sitter and went to work. I called Dr. Schrieber in the afternoon and he told me we had to see Dr. Wolf at the Floating Hospital for Children in Boston that next morning, August 14th, 2002 at 9:15 AM.

We had many tests; blood, CT scans, Ultra Sound, Bone Marrow scan, Bone Scan, MIBG scan (specific for Neuroblastoma) and urine to confirm what the doctors suspected. She was also given blood because she was very anemic. All this occurred within two days. She had a biopsy of her tumor instead of a resection because it had grown around her aorta and other organs in her abdomen and a double lumen Broviac line placed in her chest (IV line). Surgery was on a Friday and by Saturday her eyes were so purple and swollen you would think she had been beaten. Sophia was diagnosed with Stage IV Neuroblastoma; a primary tumor on the adrenal gland 15x8x6cm, metastasis to the bone marrow and the orbital of her eyes. She was immediately placed on morphine to manage the pain.

Treatment started on Sunday, August 25, 2002. Her protocol was for 5 rounds of intense chemotherapy every three weeks, surgery, double Autologous Stem Cell Transplant, radiation and accutane. Sophia had five days of chemotherapy and she was hit hard. She was very ill and her electrolytes were off. She was very angry, to the point she was having terrible fits of anger. I learned later that it was due to the morphine. She was given IV nutrition because of the decreased appetite and monitored for complications. She also contracted an intestinal bacteria called C-DIFF, she was placed on antibiotics and confined to her room. The day we were to be discharged, after 3 weeks, the IV line or Broviac in her chest ruptured and had to be repaired. As a precaution, a culture was done on the line for infection and we were sent home. Less than 20 hours later we were called back to the hospital as the culture showed an infection. We went back to the hospital and started 14 days of IV antibiotics and because she still had C-Diff we were quarantined for just about the entire 14 days. During this stay she had Round 2 of chemotherapy. She did very well, she wasn't too sick and the morphine had ended so she was no longer agitated, well no more agitated than any normal 2 year old would be confined to a hospital room.

After Round 2 was completed and she recovered a bone marrow scan was done and it came back free of cancer. Sophia was set to have her third round of chemotherapy and after that the stem cell harvest. We were told to expect the stem cell harvest to be at lest 2 days. She was hooked up TP a pheresis machine and the stem cells were spun off, much in the same way the platelet donations are done. She gave more than enough stem cells her first day, we had a CT scan the next day to measure her progress and we were home in time for Trick or Treating that evening.

Round 4 came and went and she faired very well, I compare it to eating a candy bar, that is how well she did. The CT scan she had just prior showed significant shrinkage of the tumor in her abdomen and the tumors in her orbitals were gone. Ready for Round 5. This was a little scary for me as Round 1 was the same as Round 5 and she was very sick Round 1, but she did very well and went home the following day.

While Sophia recovered from chemotherapy and awaiting the surgery to remove the tumor, which had shrunk to 5x5x5 ball in her belly, we made a trip to New York City to Memorial Sloane-Kettering Cancer institute to look into the possibility of being added to a study using Monoclonal Antibody 3F8, this will hopefully teach her immune system to fight off any residual cancer cells that may linger. On Friday December 20th Dr. Gilchrist was able to remove 100% of Sophia's tumor in less than 2 hours. Thank you God.

Sophia recovered very fast from surgery and was scanned again to be sure that the tumor was gone and had not started to grow back. The scan showed a fluid pocket under the surgical sight and had to be watched for infection. It did not go away so she was opened again, the fluid was removed and cultured. After 72 hours no infection was found and we could get started on her Stem Cell Transplant.

Sophia was admitted on January 8th for her Stem Cell Transplant. She received 6 days of "industrial strength" chemotherapy had one day to rest and all the poison flushed out of her system. On January 15th my girl had her Stem Cell Transplant, aside for some reactions to the premedicine given to prevent severe allergic reaction to the preservative used to store the Stem Cells, she did very well. She did what she was supposed to do, her white counts went down to 0 and her blood levels dropped and she required several transfusions of platelets and red blood cells. But her counts came back fast and she had no mouth sores, she had some sores in her intestinal tract and had to be placed on pain medication similar to morphine and she started to get agitated again. She went on IV nutrition because she was not eating or drinking much. She recovered very fast and we were able to go home after only 22 days in isolation.
She had a second Stem Cell Transplant in March during which she spent the better part of the month in isolation at Floating Hospital For Children. She went through 15 cycles of radiation and started an oral chemotherapy, high dose Accutane.

In June 2003, Sophia started Antibody therapy at Memorial Sloan-Kettering Cancer Center in New York City. She has treatment everyday for 2 weeks and she rests for 3 weeks before starting again. She receives a shot everyday, given by mom, an hour before going to the hospital for treatment. This treatment is very painful. Neuroblastoma is a nerve cell so the medicine travels through her body touching her nerve cells looking for any remaining Neuroblastoma cells thus sending a pain signal to the brain. She takes morphine and Ativan for pain but it barely takes the edge off. The first week of June she had all her scans and they showed no evidence of disease but because this cancer has a better than 55% chance of recurrence we are doing all we can to ensure she survives.

See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: Not yet.
Use hands: Yes.

Siblings:
sister Olivia, age 4

Child's Interests:
Sophia loves Barney and Arthur. She enjoys anything that can be manipulated in her fingers, Playdough, puzzles, arts and crafty things. As with most of these angels, loves to play Doctor.

Sibling's Interests:
Olivia likes dolls, arts and crafts and her little sister.

bcjjhh

07-01-2003, 06:41 AM

here is a list of the birthdays for the month of July and also the list of anniverseries of children who passed. If you want to send any one of these are card, just go to www.makeachildsmile.org and click on the previous kids section and that is where you will be able to find their addy

--July Birthdays--
10th (1995) Shelby D. - March/02 Featured Kid
14th (1992) Tyler B. - June/00 Featured Kid
21st (1997) Samantha R. - January/02 Featured Kid
23rd (1996) PeeDee G. - May/02 Featured Kid
30th (1998) Ashley J. - July/01 Featured Kid

--July Angel Anniversaries--
11th (2001) Arielle C. - March/01 Featured Kid
14th (1999) Sandy J. - July/99 Featured Kid
24th (2001) Kristopher K.R. - June/99 Featured Kid

bcjjhh

07-01-2003, 08:08 PM

bump

suziebee20

07-02-2003, 01:31 AM

Thanks, I try to send a card, and sometimes some stickers or something, when I can. It doesn't cost much, but postage bites me in the butt because I have to take the bus to the PO to get it.

bcjjhh

07-02-2003, 05:55 PM

bump!

bcjjhh

07-03-2003, 04:07 PM

Zachary P. - April/00 Kid

Zachary continues to do well. He just started a six-week summer program
for school. It is basically to keep with the routine and have
socialization. Being in a wheelchair, he can't run around and play
outside, so he would be bored at home.

Next week, he and four of his sisters are going to a YMCA-sponsored
day-camp for kids with cancer and their siblings. I believe this is our
4th year being involved with this great program. They also have monthly
activities and it is a really nice program.

Zach's next MRI should be in August sometime. Thank you for thinking of
him and keeping him in your prayers.

Robin (Zachary's mom)

Fred12

07-05-2003, 01:15 PM

Bump

bcjjhh

07-06-2003, 01:09 PM

Christi T. - January/03 Kid

This week Christi will finish her fourth and final round of this new
Phase One (beta glucan / monoclonal antibodies) Experimental Trial. Tests
will be conducted July 7, 8, and 9th to see if this terribly painful
treatment had any effect in reducing her cancer. Please join us in prayer
for clean scans - despite all odds. On July 10th Christi will fly to
Japan with her family for her Make a Wish trip.

Upon returning, her testing results should be in and the next plan for
future treatment should be in place. Because her cells no longer
respond to chemotherapy - options are nearly all exhausted and there are only
experimental studies available. The stakes couldn't be any higher, nor
the odds any lower, but we're committed to a cure for our precious
little girl. Thank you for all of your loving support and continued
prayers! God's great blessings to you!!!

Angela (Christi's mom)

bcjjhh

07-06-2003, 01:09 PM

Elizabeth W. - September/99 Kid

Well, there has not been much going on with Elizabeth. We did have one
big event last Sunday. We went to a Kenny Rogers concert and Elizabeth
was allowed up to the stage to shake his hand. She got more than that,
he gave her one of the signed tamborines he hands out. He kept it on
his arm until he was finished with the song he was singing. Anyone who
has ever seen him knows he does this at every concert. The concert itself
was really good!!!

In the area we were sitting, I think more people were watching her over
him LOL!!! They could not get over how well she knew his songs. She was
belting them out right along with him!! Well, today being July 4th, we
are going to have BBQ and later tonight go over to Paducah, KY and
watch fire works.

That is it for now. Hope Everyone has a wonderful and safe Holiday
weekend.

Rebecca (Elizabeth's mom)

bcjjhh

07-06-2003, 01:10 PM

bcjjhh

07-06-2003, 03:11 PM

July 6th, 2003
5:07pm EST

Hello to all,

The kids below have been placed on Inactive Status.

Please make note:
Hailey B. - February/01 Featured Kid
Sarah H. - June/01 Featured Kid
Teresa B. - June/02 Featured Kid
Branden L. - July/02 Featured Kid

Below, you will find goodbye/thank you letters from the parents of
Sarah, Teresa and Branden.

What is Inactive Status?
Please read more about it at
http://www.makeachildsmile.org/faqs.shtml#inactive

Alexandra Davila
Founder & President
Make A Child Smile Organization
http://www.makeachildsmile.org

-------------------------------------------------

From Tanya, Branden's mom

We would like to thank everyone for blessing us with your words of
encouragement through cards and expression of support through gifts.

You have brightened our days this past year and we are truly grateful.
MACS is a wonderful program and we are thankful to all of the people at
MACS that make this possibly for children like my son. You are special
people!! It was like Christmas throughout the year for Branden!!

Thanks!!
Tanya L.

-------------------------------------------------

From Lori, Teresa's mom

Hello everyone,

It is time for me to put Teresa on the inactive list. She has been
doing so well lately. She is doing just about everything she was able to
do before she was diagnosed. And she is feeling great!

I would like to thank EVERYONE for their thoughtfulness and kindness
during our difficult time. The cards and gifts were greatly appreciated.

I will continue to check in on the featured kids to see how everyone is
doing. They will be in our prayers everyday.

Please continue to keep Teresa in your prayers. We are praying
everyday that she does not relapse. Once again, thank you everyone for your
kindness.

Lori

-------------------------------------------------

From Kelly, Sarah's mom

Dear Alex and MACS friends,

We just returned home from Sarah Anneâ€™s 8 months off treatment visit
and she is doing great. We are so please that she handled the last 3
years so well and is starting to be â€œnormalâ€ again. Only being two
when diagnosed had its challenges but weâ€™ve known all along that is
was actually a blessing. She finished her treatment and will be able to
start kindergarten next month right on schedule. Like most parents
weâ€™re having a hard time adjusting to the thought of her being old
enough to go to school & being away from home every day. But we are so
thankful that sheâ€™s here and that sheâ€™s able to meet another milestone
that at one time we didnâ€™t know she would make. We are so proud of
her and what God has done for our family through her illness.

Weâ€™ve made many new friends that I know loved our daughter and prayer
for her healing. It has been an honor and privilege to be a part of
MACS. I never knew the amount of love that our family would receive
through a computer and a Post Office Box. Iâ€™ve taken dozens of pictures
to put in their scrapbooks and kept all of the letters for Sarah Anne &
her sister Emma Grace to always have and remember that God used
â€œstrangersâ€ to lift our spirits when we were at our lowest and scariest
point in our lives. I hope my girls are loving, caring people that reach
out to help others, like the example you all have set for them. I know
that many good things will come from Sarah Anneâ€™s cancer and I look
forward to watching my girls grow and use this trial to make them better
people.

I canâ€™t fully explain how the cards and gifts helped Steven and me.
To see our little girlâ€™s face when she would open her PO Box & cards
poured out on top of her was so wonderful!! We felt helpless with our
situation. We wanted our daughter to be happy with have no pain or
medicine. And we werenâ€™t sure what the future held, so we wanted (and
still do) to give her as many happy memories and smiles as possible.
That full PO Box sure helped. They fought over who would open the next
card & where they would stick the next sticker. We read each one and
talked about where it came from. She proudly told people â€œPeople who
donâ€™t even know me love me and pray for meâ€. We will forever be
grateful for each card that was sent. There are still so many wonderful
people in this world.

Weâ€™ve decided that it is time to place Sarah Anne on Inactive Status
to make sure other kids get every card and gift available to help them
through their tough days. Youâ€™ve done your job with this family. We
are so blessed. Please be encouraged by my words that what you are
doing is very important. And please continue to pray for little Sarah
Anne. She still has a long way to go before she is considered cured. But
I know that she is cured and I hope you all consider it your victory
too because your love and prayers helped get her there.

God bless you all,

Kelly, Steven, Sarah Anne & Emma Grace

bcjjhh

07-07-2003, 05:36 AM

Jody G. - April/00 Kid

Hello everyone,

Jody has had quite a fun-filled summer so far. He's attending a summer
program sponsored by his school and having a wonderful time. He's also
tanned as can be and swimming like a fish. He can dive to the bottom
of the deep end of our pool now.

He is still on medication for the ADHD but we think we finally hit the
jackpot...he is on a med that is taken after supper and lasts for 24
hours. He's having no problems sleeping at night now and is eating like
a horse...LOL He has gained 4 pounds since school ended in May. He is
far from getting chunky, since he only weighs 51 pounds and is 50
inches tall.

His birthday was June 16th and we'd like to say a big THANK YOU to
everyone for the wonderful cards, letters and gifts!!! An extra 'special'
thanks to the Gannon family and to Angel Heartstrings for the
unbelievable packages you sent. Jody was sooooooo excited to open them and see
all the wonderful goodies.

Jody will be starting 3rd grade this fall. He is anxiously awaiting a
letter from his teacher to see who he will have. He will still have a
full-time aide as per his IEP. He is still moderately delayed and
needing that extra "push" to help him learn.

Vicky (Jody's mom)

bcjjhh

07-07-2003, 05:36 AM

Christina M. - October/02 Kid

Well I thought I would send an update to all of you and let you know
what is going on.

I believe I told you all the next week Christina is going to go and get
a Broviac, we are not sure what day that will be though.

This weekend has been okay, she received a pass to get out of the
hospital yesterday. We went to the Science Center, and for the most
part she did okay. She vomitted quite a bit while there and showed
very
little interested in anything. We went to the Discovery Room, where
there is a lot of neat stuff for kids to do and I had to get out of the
wheel chair and walk around and she did not like that, she is weak.
Then we went to the Spagetti Factory down on the landing, after driving
around in circles several times to find a parking lot that was opened
and we could get into, it was pouring down rain, and they even doubled
the price to park, talk about your rip offs. :-) (The Fair of St. Louis
was going on this weekend.) Of course she did not eat anything while
we
were there, she just sat in her chair with her head down. :-(

I really wish I knew what to do to help make her happy. I can get a
smile out of her once in a while, but for the most part she does not
want to talk with me or anyone. If any of you have any ideas please
let
me know. She does good about getting up in the mornings and staying
out of the bed for most of the day, but she just sits. Usually after
physical therapy she is mad at the world and does not want to even do
that.

We have started the Celexa back up and I am hoping that will help.

As for today we did nothing. I had her walk, and she went to the gift
shop down stairs, though she only walked to the elevators and road the
rest of the way. And then I had her go to the garden on the eigth
floor, it was so nice out there, a little hot but not too bad. She enjoyed
it, I think.

Well that is about all there is to update about right now. No real
changes physically. Still she remains a mystery to all the doctors
here. And to me :-}

So until later, remember if you have any ideas as to how to brighten up
my usual cheerful little girl, please pass them along.

Lori (Christina's mom)

bcjjhh

07-07-2003, 05:39 AM

Ronnie R. - February/02 Kid

Ronnie is doing well. He has learned to swim really well and loves the
pool. He is in summer school to make up for the 8 weeks he missed this
year. He is due to be done with treatment in September, a fact which
he doesn't seem to grasp at all. Ironically, his last day of treatment
will be dad's last day of work, we just moved here 8 months ago to be
closer to his job, and now they are shutting it down. We dont want to
have to move again, but we'll manage, it could always be worse. Thanks to
everyone who thinks of Ronnie and all the other kids, enjoy your
summer!

Christine (Ronnie's mom)

bcjjhh

07-07-2003, 05:40 AM

Christina M. - October/02 Kid

Sorry I have not sent an update lately.

Things are about the same. Christina is still depressed, though if she
will allow herself I think she will smile more often. She has some good
morning, but after PT forget it she is not happy at all.

The talk is and with her approval that she will go next week sometime
for a Broviac instead of her port. Her port has been basically nothing
but problems since the new was put in and the only one able to get it
going is Dr. Huddelston, her surgeon. Plus she is tired of being poked
and the Emla (cream used to help numb her) is not really working
anymore.

The Broviac will be easier as for keeping the TPN/Lipids going and for
IV Fluids, and lab draws. But, because she really does not have a lot
of say in her care we are letting her choose this, if she did not want
it then she would not do it. This afternoon her and Dr. DelaMorena are
going to talk about it, and about why she is still in the hospital

From the surgical stand point she is doing great. But, she is not
eating or drinking at all, and as of right now the plans will be to
send
her "home" on the TPN/Lipids, but the question is about IV fluids, it
is not something they they really like to send kids home on. So we are
going to take it step by step.

As for the Apartment, I have not gotten in yet, but will if she is sent
home on fluids. Then the boys will come up and stay up here, and just
go
with us when Christina has appointments here at the hospital. And if
she was to get admitted again, there are several friends that I can
call
here that will come and help with the boys for a little while.

But like I said we will take it step by step, and nothing is yet
totally
finalized.

Lori (Christina's mom)

bcjjhh

07-07-2003, 05:46 AM

Zakki S. - November/02 Kid

Things are the same.
Zakki is holding his own and enjoying summer right now and playing
baseball.
I am having many medical tests and i am very scared about what they are
showing.
Zakki is very anxious and scared also about my health.
Hanz was just hurt (he is away) on waterfalls.
I'll write when i have more time and info.

Stephanie (Zakki's mom)

bcjjhh

07-07-2003, 07:31 AM

Annette C. - May/00 Kid

Hi everyone!
Nettie has been doing well. She is getting soooo big!! Turning 13 has
definately had an impact upon her attitude towards "child" things. LOL
She now prefers to go up to her room and listen to music as loud as it
will go for as long as I will tolerate it! However, now that summer is
here, we have had no problem with getting her out of her room as long
as she can go in the pool with her brothers and her cousins. She has
really been having a good time the past week since school got out. She
is in a summer school program called Summer Shenanigan's which is
desinged to ehance social skills. They go on a field trip everyweek and
cookout and go swimming once a week each.
She has been very healthy with one exception, her g-tube. For some
reason in the past 6 months or so, it has really been giving her a lot of
problems. We have tried everything and nothing seems to make it hurt
less or drain less. We are going to see a wound specialist this week to
see if they can come up with suggestions to help us get it healed
again.
The other big news is that she will be losing her nurse she has had for
6 years at the end of the summer. She is very sad about that, so am I.
I will be calling the agency today to find a new replacement for the
school year. Hopefully we will be able to find one we like and not have
to "peice" together a schedule for her (ie. one nurse on Monday,
another on Tues. and Thursday, a different one every other Wed. and Fri. etc,
etc.). We have been blessed for the past 5 years we had only 2 nurses
to cover ALL of her hours, the past 2 years, we have had just Joanne.
She works from 7 - 5 Mon. through Fri.. She is like another member of
our family. Say a prayer that we can find someone that will work well
with Nettie and be a good match for our family.
Nettie continues to thank you for your wonderful cards, thoughts and
prayers that have been part of her life since he arrival on the MACS site
over 3 years ago!!!!
Take Care and God Bless!!

Renee (Annette's mom)

bcjjhh

07-08-2003, 05:56 AM

Austin P. - September/01 Kid

Austin is doing better, although he has been admitted 3 times this year
so far for fevers. There is some talk of him starting school this Fall
(which would be on schedule), but his steroid wean will continue
through that date, so we're not really comfortable with that happening. We
continue to take it day by day and remember that we aren't guaranteed
tomorrow.

Bobbi Jean (Austin's mom)

bcjjhh

07-08-2003, 05:56 AM

Zachary T. - January/01 Kid

Zachary is just the most amazing child. He is doing well this summer,
his words are increasing it seems like on a daily basis.
He did go see the dentist last week , he has a few cavities that need
to be filled and she said almost all of his teeth have been chipped.
He enjoyed the fireworks went to go watch on the fourth, that is the
first time I seen him sit still for anything.
Everyone else is doing fine as well, daddy started a new job two weeks
ago and I start my new job, only part time, today.
It is hard to believe summer is almost over, Zachary will be starting
kindergarten this year. He will still be in a self contained class but
at least he is a big boy now.

Deborah (Zachary's mom)

bcjjhh

07-08-2003, 05:57 AM

Lauren L. - July/01 Kid

HI!
I hope everyone is doing well.

Lauren is doing great! She had her dancing school recital June 14th.
She did really good. No stage fright whatsoever!! She graduated from
Pre-K June 13th. She misses all of her friends, but we're planning a get
together next week. She's very excited about starting Kindergarten in a
new school in September.

Lauren is enjoying her baby sister Kayla. She would sit and play with
her all day if I let her. She covers her with hugs and kisses. She just
can't get enough of her. Alex loves to play with her too!

Lauren isn't due for new scans until October.

Love,

Sandra (Lauren's mom)

bcjjhh

07-09-2003, 05:43 AM

Nicholas D. - August/01 Kid

Nick's May scans turned out great and his next round of scans, spinal
and audio grams are scheduled for August. August will also mark one
year free of chemo therapy - YEAH!! They say if the cancer is coming
back - it usually does within the first 2 years after treatment
ends.......ONE more year to go then. But we have faith that it is NOT coming
back!

Nick is having fun this summer - he has so much more energy and
confidence. Nick is doing really well in his therapy and will most likely be
discharged from out patient physical therapy at the end of the summer
and just continue with it at school this fall.

He is still working on riding his bike - he can go straight pretty
well, it's the turns that are hard right now. He is also working on
keeping his chin up, and hopping on his left foot.

Thank you all so much for your continued support through cards,
letters, and most of all - through prayer - it really means alot!

Nick sends big hugs to you all!

Thanks and God Bless

Pam (Nicholas' mom)

bcjjhh

07-09-2003, 05:43 AM

Kristen M. - March/03 Kid

Well hello everybody, its finially here... Kristen's updates!! Kristen
had an ultra sound on her kidneys May 14th, they were good! Next was
her doppler on the 16th for her blood clots, no more shots, yea!!!!May
17th was her 1 year anniversary of her bladder removal, but she has been
so playful and active, you would never even known shes had cancer and
has an ostomy bag hanging down to her knee!

June 5th Daddy and Kristen went to California for her grandfathers
memorial, which me Kristopher my Mom + my Aunt Vera from Germany went on a
vacation also to Florida. We visited my Aunt Jean, and also went to
Disney world for a day, and ended up at St.Petersburg and stayed at a
hotel right on the ocean. It was very beautiful. Kristopher and me loved
the warm ocean swim. Kristen had fun visiting her cousins in Palo Alto,
and going to the San Francisco zoo. Too bad it was only a 4 day stay.
Our trip was 8 days. I drove just under 3000 miles, and it was great!

On June 19th Kristen had a regular doc. visit, and on the 26th she had
a ct scan, and she is cancer free still!!!! Thank God!

June 28th we dropped off Kristopher by Gordies brothers' house in
Mundelein for a night, and Me Daddy and Kristen went to my cousin Mike +
Allisons' wedding. This was Kristens first wedding. Kristen was the center
of attention all night with her fantastic dancing. She was non-stop
from the time we got there at 6pm. until 11pm.! Everyone wanted to dance
with her! It was a beautiful wedding + reception at cog hill country
club! My family had a great time!

The 4th of July was great from seeing a long parade to going to the
carnival to seeing the wonderful fireworks. Soon we have to get kristen
into pre-school, she misses the deadline for Kindergarten being born Sept
17th. But that'll give her a good boost into what she needs to learn
until she starts next year.

Thats about it for now , say a prayer for Ashley, she had a brain tumor
operation done June 20th. Keep up the good work Ashley we are all
praying for you. I Will try to get a picture out with Kristens' beautiful
hair, but until then say a prayer for her, too to remain cancer free!!!
Love,

Silvia (Kristen's mom)

bcjjhh

07-09-2003, 05:46 AM

Davin R. - March/03 Kid

Dear MACS,

We have truly been blessed on Davin's newest diagnosis. He seems to be
feeling wonderful right now. Davin continues on daily chemotherapy to
try and fight the awful beast of a brain tumor...so, far...so, good!!
I
truly believe all the wonderful thoughts and prayers have been helping
Davin beat this brain tumor. He goes in for a follow-up MRI in August,
so I will let everyone know what the tumor is doing when we get the
results.

Thank you so much for all of the support all of you are giving Davin
and
our entire family!! He loves going to check the PO Box...(he gets mad
when I stop on the way home from work and check it without him!! So, I
only do this when time is short for us...LOL) :)

Thank you all for being the angels that make our days brighter!!
Please
continue to pray for Davin as we truly believe the power of prayer can
make miracles happen!!

God Bless!!

Shauna (Davin's mom)

bcjjhh

07-09-2003, 05:50 AM

Sarah B. - May/03 Kid

Sarah now officially a fifth grader, continues to do well concentrating
mainly on rebuilding strength and endurance. Over the summer, she's
attending extended school year and taking swimming lessons. After her July
15th eye surgery, she plans on going on the road with her dad.

Debra (Sarah's mom

bcjjhh

07-09-2003, 05:52 AM

Cole F. - June/00 Kid

Hello Everybody. I would like to give an update on Cole F. (featured
6/00). Cole was hospitalized on June 27th because he was requiring a lot
of oxygen and his "lung sounds" were not good. They figured he had
bronchitis and both lower lobes of his lungs were "down". After a few
days of being hospitalized, they decided to do a CT scan to get a better
look at his lungs. After the CT scan, they could tell that he had a
"spot" in his lower right lung that they needed to look at further. They
decided to do a bronchoscopy and remove whatever it was in his lungs.
They figured it was probably a mucous plug. Well....upon going into
the lungs, they discovered there was a tooth there!!!! Cole had lost a
tooth about 6-8 months ago and we never did find it. We did have X-rays
done to check to make sure he didn't aspirate it, but no tooth showed
up. It turns out that it was
hiding behind the heart where the X-ray wouldn't see it. This really
explains why he has been continuously on antibiotics and not feeling
just right. I am soooo glad this was found and now he can get back to his
normal self.
He is already off of oxygen and looks GREAT!!!! We did come home
today, after an 11 day stay. We are so thankful to have him home and
looking good and feeling healthy again.
Thanks to all of you for your continued prayers and cards. We are
truly
blessed to have Cole in our lives.

Dori (Cole's mom)

bcjjhh

07-10-2003, 05:39 AM

Christina M - October/02 Kid

Good evening

Well today was an Ok day for Christina. This morning was kind of rough
and she was not too happy. But as the day went on she did okay. We
talked about her picnic tomorrow and what all she wanted to eat. Of
course the first reply was she was not going to eat anything. She was
afraid that she was going to throw up. I convinced her to try a
cracker
and see what happened, telling her that food will help absorb the
acids
in her belly. She ate the graham cracker (one) and had no problems,
she nibbled on it as she corrected me earlier. :-)
She tries not to act excited about the picnic, and then she forgets and
smiles.

We finally finished her DEXA scan, this is something that we have been
trying to get done since May. Then she did physical therapy, and of
course after that she was not too happy. But she stayed out of the bed
until 5 pm when they connected her to the TPN/Lipids

The plan with the TPN/Lipids and she will be going home on them. The
question is the IV Fluids. They have added them to the TPN, but today
her BUN and Creatinine was elevated, so we will watch those numbers and
see what happens. They do not want to send her home with the fluids.

Christina also had an EKG done today, I have not heard the results.
And
of course I forgot to ask DelaMorena this evening. Her heart rate is
staying elevated quite a bit, like resting is 125-130, and a couple of
time it has gotten into the upper 140s. Just one more bridge to cross.

Well I guess that is all there is right now, I will let you all know
how
the picnic goes tomorrow, she has quite a list of guest, and of course
they are her nurses and doctors. I think she will have fun.

Until later, Remember KEEP PRAYING.

Lori

Oh I forgot, we discontinued her Diamox, this is a drug that she was
taking for the psudo tumors, we will see how she does while she is in
the hospital, the neurologist said we had the perfect setting to stop
it
in. I guess time will tell. I pray she will not have to take it
again.
That will be a total of 3 pills a day that she will not have to take.

bcjjhh

07-10-2003, 05:40 AM

Chase C. - April/02 Kid

Hi Everyone,
Chase has been doing well for the most part. He's a
little more active and is eating more. He's enjoying
his self-defense class that he started this week.
Thank you all for keeping him in your prayers.

DeAnna (Chase's mom)

bcjjhh

07-10-2003, 05:42 AM

for those of you reading Joshua is the little brother of another child featured at Macs, Annette C, look up a bit and you will see her update.

Joshua C. - October/02 Kid

Hi everyone!
Joshua has been VERY busy!! He had a wonderful spring and beginning of
summer, however, it appears his immune system is trying to take a break
again. We are in the process of trialing off of the IVIG (the infusion
of donated antibodies obtained from blood donations - it protects him
from infections that his own body can't). He began needing more sleep
about 6 weeks ago. While at a normally scheduled dental visit, it was
discovered that he had a large oral abcess. While the dentist was
writing a prescription for him, Joshua commented that his arm hurt from a
mosquito bite. I looked down and was shocked to see a very large
cellulits covering almost the entire inside of his left arm and wrist. The
dentist sent us straight to the pediatrician and contacted the Immunology
doctor. The immunology doctor assumed we should admit him, but the
pediatrician and I really felt that he "looked" to good to be admitted.
So they discussed whether he should do oral or IV antibiotics and they
setteled on two high powered oral antibiotics for 10 days. His arm
resolved within 3 days but his mouth was still healing with only 3 days of
antibiotics left. We go back this Friday to have it looked at and
decide if he needs the IV meds to fix it completely. Then the dentisit
will decide if she can save his two infected teeth (one is a baby tooth,
but there is no adult molar behind it because of chemo, and the other is
a permanent molar - which has already been crowned to save it). Here's
hoping.
Yesterday it looked like he developed another eye infection, but he
looked a lot better this morning though. Besides dealing with his health,
Joshua has completed another season of little league (though he really
didn't enjoy himself because he was to tired for the games), he has
been very busy with Jui-Jitsu (Brazillian martial arts) which he is very
good at, and going to camp (he and his little brother Tray enjoyed Camp
Good Days Jr. Good days camp - a 4 day "day" camp) and going on many
different field trips. Now he is in summer school and really happy he
got the teacher and program he did.
Well, that's it for now.

Our hearts continue to be warmed by the thoughtfulness of the card
senders across this planet. Joshua now relishes his cards that much more,
because he can read them! Thank you, Thank you!!

Take Care and God Bless,

Renee (Joshua's mom)

bcjjhh

07-10-2003, 05:44 AM

Kimberley G. - October/00 Kid

Hi all,

Well like always this update is a little late. Kimmie seems to be doing
well. She has not had many seizures at all. She has had some very soft
BMâ€™s the last few days. All I can say is I want to rip out the carpet
where she is. She is still eating well. I had planned on her going to
summer school but that has changed. She was going to be on a bus that
has a very bad driver. This lady drives not only in her lane but in the
lane next to her as well. She changes lanes without using her signal.
She looks in her purse for her sunglass and does not watch the road and
than crosses over the line and than has to jerk the wheel to keep from
hitting a car. I know all this as during the school year I went on a
field trip with Kimmie and she was the bus driver. I did talk to the
people in charge of the buses and told them I didnâ€™t want Kimmie on that
ladies bus again. Well when I called to find out what time the bus was
to come for summer school and who the driver was going to be I didnâ€™t
send her. I may drive her to and from summer school but than I would
have to drive her to the field trips as it would be the same lady driving
for the trips. I feel bad not letting Kimmie go to summer school but I
feel as if I am doing whatâ€™s best for her. Well enough on that
subject. Kimmie has been talking more this past week. She says things that
sound like real words. Her latest is boo, bumpy, and she still loves to
yell nanny, mommy, daddy and no.
We had a nice 4th of July. We spent the day at Anna house. Tony and
Madison stayed outside most of the day around the pool. I had planned on
being outside too but Kimmie had other plans for me. It was very hot
that day and she canâ€™t take the heat so she stayed inside watching
Barney. She didnâ€™t mind that part at all. Well Anna has an older daughter
so her house is not little kid proofed. Kimmie found this very fun to
check out. I went in to check on her and she had found a way to open the
DVD player. She found the pictures that were in her reach. She found
that she could turn knobs on the stereo. I than just decided to stay
inside with her to keep her out of trouble. At least we stayed nice and
cool. Thanks Anna for having all the crew over to your house. Kimmie and I
left before everyone else so she could have her meds. Tony and Madison
stayed at set off fireworks. They had a great time. I watched the
cities and all the ones that were being set off around our house. Kimmie
crashed out on the couch watching Barney. It was a nice day all around.
Itâ€™s nice to hang out with the family and the kids loved the water.
Madison had a nice birthday as well. We had a small cookout for her.
Her grandparents came over as well as some of her uncles. My mom came up
and brought my niece with her. We didnâ€™t tell Madison that Brandi was
coming up. She was so excited to see her. She loves Brandi a lot.
Brandi is great with her. Brandi helped her put on make-up. My mom took them
shopping and they had a blast. Madison went to Build A Bear. She went
the weekend before with me than she went with my mom. Madison had a
great time shopping. I need to thank a very special lady (DEB) and her
husband. They sent Madison a birthday box. On the website Hugs and Hope
they have a program set up that every child including siblings is to get a
birthday box. Well when I told Deb that Madison never got hers she sent
her one right out. Madisonâ€™s mouth opened wider and wider as she
pulled the stuff out of the box. She loved everything that was in the box.
THANKS Deb you were very kind to her. I know at times Madison feels
like she has to take the back seat to Kimmie and you made her feel very
special. Tony took Madison to buy a hamster for her birthday. She
didnâ€™t even have it a week before it died. We took it back they said it had
gotten diarrhea. She was so sad she cried and cried. We now have a new
hamster. She says this one keeps her awake at night. He likes to make
noise.
I am feeling better from my surgery. Tony went with me to my follow up
appt. The Dr said I had two choices. I could either take Lupron shots
for six months. The shots out you into a fast menopause where you go
through hot flashes, mood swings, and bad headaches. They make the systems
stronger than when you go through it naturally. I could only take them
for six months than have to come off them. The endometriosis can always
come back after that. My second choice is to have a total hysterectomy.
They would take both ovaries, uterus, and cervix. She will have to the
abdominally as I have too much scare tissue. I am going to just do the
hysterectomy. I plan on doing this when the kids are back in school. I
thought this would be easier for Tony and the kids. He can work while
the kids are in school. I know itâ€™s going to be a long six to eight
weeks. I wont be able to lift Kimmie at all. I will miss cuddling my
baby. I love to cuddle her at night. I know that in the long run it will
best for me as well as my family. I have to go in for a mammogram and an
ultrasound. I found a lump in my right breast. I went to the dr. to
have it checked out. She found another one on the same breast that was
larger than the one I felt. She also found one on the other breast. She
thinks that they are fibro cysts. I am praying that is all it is. I feel
as if I am falling a part. I told a friend of mine they could just
start at the top and just take everything I donâ€™t need anymore. I think I
may lose my mind if anything else goes wrong in this family. I just
donâ€™t get it why does my family have to go through so much and others
just breeze through life. I want to thank everyone that went to Hugs and
Hopeâ€™s raffle. They raised over $1000.00 for the two kids. They now
have the fall raffle going. Well I had better end this update for now.
Thanks for all the prayers and support that you send our way.

Mary (Kimberley's mom)

Gia

07-10-2003, 10:52 AM

Bump~~:)

{{{{bcjjhh}}}} I hope your doing well sweetie~:p

bcjjhh

07-11-2003, 05:59 AM

Thanks for the bump sweetie,

I have been well at times lol, its good to be back seeing some old buddies!~

Annie L. - May/01 Kid

Annie Marie is doing ok. at the moment.
The ultrasound went so well that the Dr. kicked her out for good
behavior!! I wanted to cry!! Annie only has to get ultrasound every 3
months until 2006! Blood work is every 6 months, Chest x-ray, once per
year, unless of colds ect. and urine samples are gone for now!!!

Her ultrasound went so good...Her kidney grew another 2 cm.!!
Yeah Annie!!

Recently Annie caught something and I took her to the Dr. and she has
double ear infection, ear drops, wheezing, and a nasty cold in her
nose. NO SWIMMING for 3 days. Annie is not going to my daycare right now
because of her cold and the air conditioning is broke so she is pretty
bored...Thank you all to who write to Annie and the pretty stamps you
affix to her envelopes. She loves them!! Annie's sisters and brother are
doing great also and thanks everyone too for the cards and stickers...
Until Next time!
Have a save and happy summer! Stay Cool!!!

Julie (Annie's mom)

bcjjhh

07-11-2003, 06:01 AM

Christina M. - October/02 Kid

Good morning

Well the picnic was fun. At first Christina was not talking and really
was not into it. That was until Dr. Sweet came in to the room and sat
down next to her and started talking with her. He actually got her and
every one else laughing at their conversations. Needless to say
everyone was shocked that he was the one who made the day.

The mood did not last all day long like we hoped. But that is okay it
is a start. The next thing that is planned is for her to make some
cookies. Dr. Sweet and DelaMorena both would love to taste them.

This morning Christina went for her broviac and she is happy that it is
done. The site is not sore or anything. Though where the old port was
is very sore. She did fine throughout the procedure.

That is about it right now. I hope to hear from you all.

Thanks

Lori (Christina's mom)

bcjjhh

07-11-2003, 06:02 AM

Ashley C. - November/02 Kid

Hi Everyone!

Well we were supposed to go home today but Ashley had not urinated in
over 8 hours and they were concerned. She had an ultrasound that showed
she still has kidney stones in her left kidney last week it said the
right kidney so now I am confused! The CT showed last week they were in
the right kidney and she had another one tonight and we have not gotten
the results as of yet.
Dr. Kaplin sent her for a chest x-ray he wanted to see if had any fluid
in her lungs. He is the kidney specialist. She had no fluid in her
lungs I was glad. I ask him if everything was normal ie.. Blood work, chest
x-ray, urine and labs then why is she having such a hard time going?
He stated that it hurts when she goes because she has a lot calcium in
her urine.

Our hopes that we will be able to go home tomorrow.
PLease keep praying!

Take care.

Norine (Ashley's mom)

bcjjhh

07-11-2003, 06:33 AM

Kendra M. - May/00 Kid

Hi Everyone,

Kendra is doing as well as can be expected at this time. In May she had
to be fitted for a brace for her right leg, because her foot is
beginning to turn outward.This is because of progressive worsening of her
neurologic functions. She is doing very well with the brace at this time.
We won't know if it is going to help until October, when she goes back
for her check-up. Kendra has been enjoying the summer, but not on the
hot humid days, because she can't go outside because it makes it to hard
for her to breathe even with her oxygen.
We would like to thank everyone for the cards, letters. etc.
We are so amazed at all the caring people in the world! Thank you all
for caring so much for our daughter.

Melva (Kendra's mom)

Gia

07-11-2003, 09:11 AM

Originally posted by bcjjhh
Thanks for the bump sweetie,

I have been well at times lol, its good to be back seeing some old buddies!~

{{{{bcjjhh}}}} I am glad you are well (at times ;))~I sure have missed you and your posts. :o

bcjjhh

07-13-2003, 05:26 AM

Brianna B. - April/01 Kid

Hello,

It has been a long week for us. On Wednesday July 2, 2003 Brianna
started having seizures every night. We took her to her neurologist and will
now be going throuhg a series of test MRI, MR Spectroscopy, 48 hr. EEG
and lots of blood work to try and determine what to do next. She has
been on Trileptol to control the seizures which has worked up until last
wednesday. It just seems strange that these are all happening an hour
or two after receiving her medication. We done the blood work
yesterday July 10th. and will be having the MRI and MR Spec. done on July 25.
Then on August 6 she will get the EEG wires on for her 48 hour testing.
Please keep Brianna in your prayers.

Horse therapy has been going really good, they have noticed her head
control getting better during these sessions. She has been holding her
head more midline. We will be getting her new foot braces on July 14th
and will be able to use her stander more then afterwards.

We would like to thank all those that have continued to send prayers
out to Brianna and ask that you continue to pray for her while we try to
find out why she is having more seizures.

Thank you

Yulinda (Brianna's mom)

bcjjhh

07-13-2003, 05:26 AM

Tiffany L. - December/01 Kid

Tiffany is doing well this week . Thank God ! Her grandparents came up
from NC to see her which made her week even better. Last week Tiffany
received a Lap top computer from the starbright foudation. She was
chosen to get one when she was in the hospital last month. She is so
thrilled to have one. Now when she is pain she uses her lap top to distract
her while she is in bed.
Thank you again for all the cards that are still coming for her. We are
hoping to send you a new piture of her when I learn how to do the
scanner .
Thank you and God Bless all of you,

Annamarie (Tiffany's mom)

bcjjhh

07-13-2003, 05:27 AM

Anthony G. - April/03 Kid

Anthony had a catscan done this past Friday and his scan was clear.
Actually, his scan showed his scar tissue was healing were his tumor was
removed. He goes once a month for a check-up. He is having a great
summer enjoying the beach, going to the boardwalk, going camping, playing
with his cousins, and just doing fun activities. It is so great to see
him be a little boy again, and not have to worry about fevers, low
counts, needles, dressing changes, transfusions, and everything else that he
endured.

Thanks to everyone who sents him cards and gifts. It really made him
smile and look forward to it! It is so nice that strangers care about our
son. Thanks again.

Marlene (Anthony's mom)

bcjjhh

07-13-2003, 05:27 AM

Hannah F. - February/03 Kid

We flew to the Camp Sunshine costume party courtesy of AirLife Line,
which is an all-volunteer force of pilots who give of their time, plane,
gas, and friendship to fly critically ill children to and from
treatments and camps like Camp Sunshine. What a glorious experience for all of
us to fly with these wonderful people and see so much of the east! It
was fantastic.

We arrived in Portland, Maine on Sunday evening and the fun began with
dinner and a magic show. We were treated all week to great meals,
swimming, mini golf, water activities at the lake, rock wall climbing, games
for the adults, kids time away from the parents, and wonderful group
discussions with other parents in the same situation. We had a great time
getting to know other families and hearing their stories, but it was
also somewhat sad to know the reality of just how many children with
cancer there really are.

Some of the stories were hard to hear. Relapse came up a few times. The
fact of the matter is that this is something that we will have to live
with the rest of our lives and are we going to just get on with living
or get bogged down in the sorrow. It is easy to take the "boggy" road.
There is so much to worry about. Will she relapse? If so, will she
survive? Will she develop another cancer later in life because she is more
susceptible than others? Will she ever be able to get insurance after
ours stops covering her? Will she have these learning disabilities they
speak of from the chemo? How do I not think of these? There is no
guarantee that after five years from her last treatment, when they declare
her "cured", that the cancer would not come back. It has happened. I
heard it first hand.

I will not let this destroy my life or Hannah's. I will choose to be
informed and well read about it all, but I am going to do my best to live
happily for myself and for Hannah. I am working hard at making her life
as normal as any other three year old. I think she will be fine. We
will face the other challenges when and if they come. Even still, those
thoughts do still seep in, ever so unexpectedly, now and then.

Traci (Hannah's mom)

bcjjhh

07-13-2003, 05:28 AM

Gia, it is good to be back too. I will be here more than what I have. How are you and your family doing? You are such a sweetie!

bcjjhh

07-15-2003, 06:36 PM

Katelyn Elizabeth H. - July/02 Kid

Katelyn is doing really well. She was having way too many ear
infections earlier this year so her doctors at the cancer clinic referred us to
get tubes put in. That was in April and she has been doing great since
then.

Katelyn is really enjoying the summer, she swims every chance she can
get. She is also looking forward to going to Kindergarten in August. I
can't believe it's just a month away! We are more than half way done
with treatment, hopefully in June 2004. It seems so far away sometimes,
but then this year is flying by so we cautiously look forward to being
off treatment.

Katelyn has been able to participate in "Movie Camp" on Thursdays at
her day care and splash day on Fridays. It's been a great summer and we
hope to be able to take Katelyn to Fiesta Texas or Astroworld before
summers end.

She talks a lot about when her dad took her to ride rollercoasters at
Castle Park in California when they were visiting family and that was
about three and a half years ago (before her diagnosis). I will keep you
posted about that and let you know how Katelyn does at Kindergarten.
Thanks for all your cards, gifts and prayers.

Vera (Katelyn's mom)

bcjjhh

07-15-2003, 06:36 PM

John C. - February/03 Kid

Hello Everyone John has just gotten out of the hospital after a 5 day
stay. He has chicken pox. John also had a blood clot in his port which
they think is all dissolved, but are not sure. He is missing at least 12
days of chemo due to the chicken pox. Thank you to all those who have
sent cards and all those who I know will pray for him.

Lorraine (John's mom)

bcjjhh

07-15-2003, 06:37 PM

Ashley J. - July/01 Kid

Sorry about the delay in sending an update on Ashley. We have been on
a
much needed vacation, we took the kids to see their grandparents and
cousins in Alabama. We had a wonderful 4th of July, except the tires
on our van were slashed by two teenage boys. Luckily, they were caught
the next day and are spending much needed time in juvenile detention.
They slashed over 20 cars in a 24 hour period.

Ashley is doing fine. She had surgery at the end of June to place
tubes
in her ears and remove her adenoids. She breezed through surgery like
a pro and amazed the docs and nurses, no crying; my brave little girl.
Her liver seems to continue on a stable path. So normal infact that we
are weaning her from one of her medications. The cyst found on her
liver last year is unchanged and is not causing problems so we will
continue to monitor it for growth, changes, and spreading.

Ashley is getting ready to start kindergarten. We are working on
finding her a backpack that is small enough for her but large enough
for school folders, etc. She either wants a Barbie Backpack or a Dora
the Explorer Backpack. But if we can find a kitty backpack, with real
kitties that would be GREAT! Kindergarten is fulltime here in Florida.
She will be going to school from 8:30 to 3:30 so I worry about her
energy level. She still takes naps, so I guess I will be adjusting her
bedtime schedule so that she can make it through a day at school without
"attitude".

Laurie (Ashley's mom)

bcjjhh

07-18-2003, 06:13 AM

Gregory G. - September/01 Kid

Gregory continues to do well and will be starting 2nd grade next week,
he is on a year round schedule so his summer break is shorter. He had
another hearing evaluation and the loss he already had has stayed the
same (which is a good thing). And he has another appointment with a
urologist to hopefully find out what is causing him to get bladder
infections and bedwetting (all since treatment).
Other than that he is growing like a weed and keeping us very busy.

Lorraine (Gregory's mom)

bcjjhh

07-18-2003, 06:14 AM

Joshua A. - June/03 Kid

Joshua is doing pretty good with his chemo. Joshua has hurt his left
foot and has to where a brace called a (WEE WALKER) for the next 4
weeks. He can't walk at all. Joshua is having a spinal tap done on July
21st at Children's Hospital of Wisconsin.

Karen (Joshua's mom)

bcjjhh

07-18-2003, 06:14 AM

Katelyn Rose H. - February/99 Kid

Greetings all!

As I type, Katy is attending Camp Coco for the very first time. Camp
Coco is a camp for kids with cancer and other blood diseases. Katy was
allowed to bring one sibling (she chose older sister Sarah) and the
girls have been gone for a week, and will come home tomorrow. Seth and I
have been having a great week doing things together...just some
"mother-son" bonding time. It's been nice.

Our Disney Cruise was WONDERFUL. The Bahamas are beautiful and the
shipboard experience was full of Disney Magic. We saw wonderful shows,
ate great food and enjoyed the sunshine and relaxation that comes along
with being on a cruise ship. It was a once-in-a-lifetime experience,
and we made some great memories together. At the end of this e-mail,
I'll include links to some of the pictures that were taken for you all to
enjoy.

Katy's health has held up remarkably well so far this summer. She is
full of energy and despite our almost constant application of SPF50
sunscreen, she has developed a nice nut-brown tan. She's scheduled for a
phlebotomy on the 23rd, and we should be winding down with this
treatment, we anticipate that she won't need them any longer after Christmas.
Her HgH replacement therapy is really simple and she's grown nearly 3/4
of an inch since April! She seems to be magically transforming in
front of our eyes into a young lady. Although sometimes it makes me sad to
watch her metamorphosis from little girl to pre-teen, most days I am
grateful beyond measure. There was a time once when we weren't sure
she'd make it to age 7, let alone 10. We have been blessed!

Speaking of blessings, many of you may remember that Katy was given the
honor of meeting her marrow donor Ernie on National TV. NBC's Today
Show taped a segment all about marrow donation about two years ago. The
segment featured a donor, and two recipients, Katy and another
gentleman, Marv Rivers.

On Monday, the Today Show will air an "update" in which Marv will get
to meet the marrow donor that saved his life. The Today Show also
contacted us to ask for permission to re-air parts of Katy's meeting with
her donor Ernie, as well as including an update on Katy's status. We
were thrilled! So...if you happen to be tuned in to the Today Show on
Monday morning the 21st, keep your eyes peeled for Katy, as well as the
touching story of Marv meeting his donor. Warning...keep a box of tissue
close at hand!

Enjoy the rest of your summer....school will be here before you know
it!

Mary (Katelyn's mom)

bcjjhh

07-18-2003, 06:15 AM

Abby O. - January/01 Kid

Dear Friends and Family:
Praise God that Abigail's engraftment is 100 percent in both cell
lines!
We are joyous and thank everyone for keeping her in your prayers. This
is great news!
Thank you and have a blessed day.
Love,

Suzanne (Abby's mom)

bcjjhh

07-18-2003, 06:16 AM

Ricky K. - June/00 Kid

Hi everyone
I have GREAT news Ricky's new wheelchair finally got approved today!!!!
We have been having so many problems with this old one it will be so
nice to see him in a chair he is comfortable and safe in! Thank you for
all the prayers we needed them I wonder if they finally approved it
cause I wouldn't quit bugging them Ha ha Now we just have to wait for it
to be shipped in and built which I hope won't take to long! I am in a
hurry I just wanted to pass along the great news Its nice to be able to
write something happy sometimes!!!

Heather (Ricky's mom)

bcjjhh

07-18-2003, 06:17 AM

Elizabeth I. - August/99 Kid

Tina, mom to Elizabeth I, has cancer. Sunday, she woke up with a
nosebleed and later started coughing up blood.

She's in Intensive Care with a serious infection of some sort and low
platelettes. Pray for her.

She is doing a little better today.

Timothy (Elizabeth's dad)

Gia

07-19-2003, 11:06 AM

{{{bcjjhh}}}
Bumping back up~~

bcjjhh

07-22-2003, 05:04 AM

Kady L. - December/02 Kid

Hello:

Kady was scheduled for eye surgery in June for both eyes; however, it
was cancelled due to a hospitalization due to hypoglycemia. We are
rescheduling for a later date.

Her brain MRI has me a little baffled. When she was one, doctors
diagnosed her with Hydrocephalis (water on brain); however, when I took her
to an actual neurosurgeon, there were pockets; however, no fluid.
Since then, the pockets have came and went. There seems to be no obvious
damage because Kady performs above age level. Her last MRI; however,
showed "smooth" brain matter. The doctor said that a normal brain should
show "bumpy" matter. Noone seems to be able to tell why it's like that
or what the pockets even are. Like I said, she is above level, but
it's hard not to wonder what the pockets are and what they are doing
there.

Kady remains a fighter and is my true hero. She GREATLY enjoys all of
the mail. She wants everyone to know she will be six on August 5 and
will be a first grader. A BIG girl!

Kristi (Kady's mom)

bcjjhh

07-22-2003, 05:04 AM

Christina M. - October/02 Kid

7/15

Good afternoon everyone

Well, we are planning on getting out of the hospital tomorrow sometime.

Christina is still vomitting, although she is learning to control it
better. Today was a pretty good day for her. I think she will do so
much better when she is not in the hospital.

The plan is:

1. Discharge from here tomorrow
2. Stay at the RMH for a couple days
3. Go home more than likely on Saturday morning.
4. She will be seeing Dr. Wheeler twice a week
5. She will also be having home health nurse come to the house three
times a week.
6. Resume physical therapy at home 3 times a week

Christina will be going home on the TPN/Lipids, and that is part of the
reason for all the care. We are going to try to make it a month with
no
hospitalizations. If she was to need extra fluids other than those in
the TPN, Dr. Wheeler will be able to do it in his office.

I have not talked with Dr. DelaMorena this evening yet to see what all
the final things are. Christina is scheduled to receive her monthly
IVIG, and I am not sure as to when she will be getting that. If we
will
do it here on Thursday or sometime tomorrow. We will see.

Just wanted to update you all on what is going on here. Oh, for those
who know the boys, please do not tell them. Thanks

I am going to try and have some friends decorate the house in a Welcome
home theme for Christina, I think this will help her too.

----------------------------

7/16

Just a quick update

We did not get out of the hospital today like orginally planned. Dr.
DelaMorena came in this morning and said how does Friday sound for
discharge. I have not had a chance to talk with her this afternoon as
to why the change.

Christina did get her IVIG today, and as soon as that was done, she was
started on her TPN/Lipids. She also slept all day, so I hope she will
sleept tonight.

She did a 6 minute walk test this morning also, and I am not shocked to
see that it was down from the last one. Also, she did Pulmonary
Function Testing, and she is down to 26% lung function. Part of it is
that she has been so sick. I think we are going to try them again and
see if we can't get closer to the 40% she was a month ago, pray we do.

Well that is about all for now. I will let you all know when we are
out
of here. I do know that we will be heading home on Saturday at the
latest.

Talk with you all later

Lori (Christina's mom)

bcjjhh

07-22-2003, 05:05 AM

Aschdon B. - June/03 Kid

I just wanted to share with everyone that Aschdon will be having his
tendon release surgery done in Salt Lake in October. We went to Denver on
Monday to talk to the surgern about doing it there but his whole
attitude make know that it was the wrong place to have it done. Good news is
that they took x-rays and he still has no scoliosis.

Well in the talk with the doctor I let him know that this was not
something I just decided to do out of the blue. We have gone through and
looked at the positives and the negative aspects and what could go wrong
and so forth. Well the surgeon told me that I really need to rethink it
because there is a high chance he would never wake up. Or that they
would need to trach him. Right when he said that I told him that Aschdon
has had g-tube surgery and his last pulmonary function test was
excellent. He said that because of his SMA that he would most likely go home
trached and that I need to understand this is a progressive disease and
he is only going to get weaker. Plus there is not that much benefit to
standing so the surgery is not worth it. On top of that he was telling
me that in two years (5 if we were lucky) the tendons would go right
back to where they were before and what would be the point. I told him the
point was that he would have the two years to stand and that all in it
self was worth it.

Now don't get me wrong he is a great ped. surgeon just one of those
docs that not up to date on the SMA stuff. Before we left he just asked us
to talk it over with the muscle clinic people (we are seeing them next
Friday) and see what they say and if they say to go ahead he would be
more than happy to do it. However from what it sounded like he wasn't
going to do much at all because he wasn't going to touch the hips at all
and only a little on the leg so I don't think it would be worth it to
go to him any ways.

I called Adam (Dr. Swoboda's nurse) and told him what had gone on and
he said we will defiantly do it in Salt Lake and he said if Aschdon does
have as good as he did with his g-tube surgery then we should have no
worries. Of course he wanted me to know that there are chance things
could go wrong or something like that but just like with every one and
every surgery there is a risk.

So to make a long story short, he will be getting the surgery done in
Salt Lake in October and we are going to fit it in with our next visit
for the SMA study.

I also wanted to share that when we went for the SMA Study in Utah we
got good news!! Aschdon is improving a little bit. Since they saw him in
Sept he has grown 4 inches, and gained almost 5 pounds!! Which is un
hear of for him. He is now at a wonderful 27 pounds (dropping down to 26
though) He has gained a little in his muscle's and they were able to
find 22 motor neurons when last time they only found 9. They were baffled
by it but all I have to say is God is watching over him Well that is it
for now. Hugs,

Kenya (Aschdon's mom)

bcjjhh

07-22-2003, 05:08 AM

please pray for this little boy Luke. Warning if you click on this link it is very emotional. This little boy is living out his last days at home and his family has decided to share it.

http://www.caringbridge.org/oh/lukeervin

spongebob

07-22-2003, 08:50 AM

bumping back up.. thanks for the link...

cch

07-22-2003, 09:17 AM

Each child's mailing address can be found on their story page right next to their picture. See how easy it is to Make A Child Smile?

If you have some extra kindness in your heart, consider sending a card or a little something to the children's young siblings too? Sometimes they feel "left out" with all the attention that the sick child gets, and some even get very depressed. Once, a sibling of a featured kid said "I wish I had Cancer too so I could get some mail!". Remember, it's not only the child who is ill that goes through all this nightmare, the whole family does. Thank you all!

Important Note: Different kids will be featured here monthly. You're welcome to forward this site's LINK to your friends if you want to ask them to help. But please DO NOT send the child's address to your friends by e-mail or regular mail. Just let them know about MACS and tell them to come here! We do not want our beautiful goal to turn into something like the Craig Shergold Case. Back in 1989, Craig, a child with cancer, began receiving cards from all over the world because a chain-letter (by snail-mail) was going around asking people to send him cards. He was very satisfied after receiving 16 million cards in just one year! Currently, 13 years later and a total of 350 million cards, he is still receiving 36 mailbags full of cards every week because the chain letter is still going around. The Shergold family is begging for people to stop sending cards. In Craig's case, people forwarded the information about sending the cards to the boy. In our case, we want people to forward this site's link only. This way, we can inform people on our site if the family does not wish to receive mail anymore or in case a child passes away, we do not want the family to keep receiving "get well" cards.

Thank you,
The Make A Child Smile Organization

bcjjhh

07-23-2003, 06:00 AM

bump

bcjjhh

07-24-2003, 05:25 AM

Jennifer M. - November/98 Kid

Hi All

It really has been a very crazy and stressful time for Jenn and I.

Jenn has had tumor growth since Sept of 02. Then Jan of 03 she had the
gamma knife done Gamma Knife Procedure
http://www.umm.edu/features/gamma_knife.htm (If you like to check it
out) Then her April 03 MRI showed tumor growth. She had a MRI done last
Tuesday and on Thursday she had some eye problems (blur vision) We had
an appointment on the 22nd so I figure keep an eye on it and see. Then
over the weekend she got weird feeling and by Sunday headaches. On
Monday was her worst headache and she got nauseous so I called the doc at
Children's and they wanted me to bring her to the ER. Which I did. Now
Jenn has a Codman Programmable Shunt which she had placed in her head 4
yrs ago at St. Christopher's. When we got to the ER at Children's they
did not have a clue on how to deal with it cause they never heard of it.
FIVE hours later they get a hold of the head of neurosurgery and he
says he thinks it is best that I go back to St. Chris's and let them
figure out the shunt. So the next morning I called St. Christopher's and
they said to bring in her right away which means I could not go to the MRI
reading (to tell me if the tumor had grown yet again) Ok so I went to
St. Chris and after ALOT of talking and catching up they did a X ray and
they said her setting is at the right spot but they reset her again
(they reset with a tool they place on her head and push a button amazing
!!) SO we left there with me trying to make a decision whether I will be
going back there for good.

Today I got a call from Children's saying the MRI films they sent me
were sent back saying wrong address. UGH! The address was right the UPS
guy was mistaken. So I went there and also to get Jenn's MRI reports
from her last 3 MRI's. When I got her latest the one from Tuesday (7/15) I
seen it was incomplete. SO I asked a nurse and she got me the full
report and here her neuro doc was there and she wanted to give me a
reading.

Well the reading was not good at all :( She said the tumor is growing
again. That the tumor board (they meet every Wed) is very concern. Also
it is growing into the brain stem which is really bad !! Now this could
mean 2 things. That the procedure she had in Jan is causing swelling or
her tumor is growing. So the doc put her on dexamethasone to hopefully
bring down the swelling. If it works her problems will improve, if not
they will get worst or stay the same and then it prolly isn't swelling.
After I have the appointment at St. Christopher's on Tuesday I am going
to over night Express the films to Pittsburgh cause they will make a
big decision on her next step.

In the mean time I am trying my best to keep my sanity and not scare
Jenn. But inside I am petrified !! This is the scariest her condition has
become.

Will keep everyone update !!

Hugs

Reni (Jennifer's mom)

Fred12

07-24-2003, 03:57 PM

bump

bcjjhh

07-24-2003, 06:44 PM

Hillary C. - January/03 Kid

I feel so blessed to write that Hillary is doing very well. She
continues monthly chemotherapy (through her port-a-cath) and takes chemo by
pills every night.

Hillary has had a great summer - with one *minor* exception. She broke
her ankle just before going to Camp Sunshine. But, she had a great
attitude about it and enjoyed being driven everywhere in a golf cart!
Anyway, she's been in a cast for the past 5 weeks, but is supposed to get
it off tomorrow. At least we'll still have a little bit of time to
swim before school starts!

Her brother, Sam, is doing well too. We've had a pretty laid back
summer, and I've enjoyed being home with Hillary and Sam. But, I am
starting back teaching this fall. It is the first I've worked since
Hillary's diagnosis 11/01. I am excited, but a little nervous too. One great
thing, though, is that I'll be teaching at Hillary's middle school
which is also next door to Sam's elementary school!

About a month ago, RJ Helton (one of last year's American Idol
finalists) came and gave a local concert. (He is from our town.) Anyway,
Hillary got to meet him, and he dedicated a song to her! He was
incredible! He is a Christian and will be releasing a Christian album this
fall. We met him and his parents- they are such a nice family.

Thank you so much to those of you who have sent or continue to send
cards. We treasure your prayers....God is good and we are so thankful.
God bless you all (or ya'll as we say in the South!)

Cindy (Hillary's mom)

bcjjhh

07-24-2003, 06:44 PM

Christina M. - October/02 Kid

Well we have been home now for 4 days and things are about the same as
they were in the hospital. Christina is still not really talking and
is still throwing up. Her energy level is way down and she just wants
to sit and do nothing.

We did go to play putt putt this afternoon, but she was not into it
like she thought she would be, she just wanted to sit down and let us
(grandpa and I) hit the ball. Finally I let her sit down and put her feet
in the water. She was happy with that and grandpa and I finished out
the game, the loser had to buy the winners lunch, and of course I won
:-)

As for our appointments and schedules things are falling into place.
It seems we will be in Joplin everyday of the week except Weds. and
Sundays. On Monday and Thurs. it is to see Dr. Wheeler, Tues, Thurs, and
Sat it will be for PT, on Tues, and Fri. home health will be coming
(although this week it will be three times, to get me comfortable with
giving her an IV push of Epoegin. This is a med that will help her body
produce red blood cells.

As for the TPN/Lipids go things are moving along with that, we are
having no problems there. I did go and get her a backpack on wheeles today
to help her carry it, other wise I was carring the pack the they gave
for it, it is quite heavy, if you figure it is one bag the runs of 16
hours at a rate of 135ml an hour.

Her pulmonary functions are still real low, they are staying in the low
20% and her lower airway functions are less than 10%. Thus the lack of
energy. She gets short of breath easy. Tues during PT we had to put
her on 2 liters of oxygen during the tredmill, her oxygen levels dropped
into the low to mid 80%s, she was able to continue the walk at 0.8mph
with the O2.

The boys are at camp right now and they were excited to go, of course
it meant a hair cut and new clothes for both of them so they made out
pretty good. They should be back Friday evening sometime. I have not
heard from them yet, so I assume they are having fun, I know they were
excited about going, infact when I got them up at 3am they gave not
fight, I think I fought myself more.

Well, That is about it right now on the home front, I will try to keep
you all posted on the happening here.

Lori (Christina's mom)

bcjjhh

07-24-2003, 06:45 PM

Caleb L. - August/02 Kid

Caleb is now wearing braces on both legs due to damage caused by
vincristine. He is suffering from vincristine toxicity, so his dosage has
been lowered. His new medicine, neurontin is controlling his neuropathy
pain thus far. His IGG levels are low again, but the onc. wants to hold
off on IVIG infusion for now. Caleb feels good and is looking forward to
starting first grade!

Debbie (Caleb's mom)

bcjjhh

07-24-2003, 06:45 PM

Brandon R. - December/02 Kid

Brandon has had a few very rough weeks, we thought his cancer had come
back, so after many tests we found that it has in fact not come back.
His counts have been very off so he is recieving some treatment for
that. Then his intestines were giving him a lot of problems, we were
admitted to the hospital for again more tests.

After a few days he was feeling much better and we were sent home. They
feel whatever was going on corrected itself. He also battled with
pnuemonia last month as well. Now he is feeling great and enjoying his last
few weeks of summer Thank you again for all you do , Brandon and
Chelsea really enjoy recieving mail.

Lisa (Brandon's mom)

bcjjhh

07-24-2003, 06:45 PM

Ashley C. - November/02 Kid

Hello Everyone!

Well I am finally updating. I have been very sick and it has been hard
to sit at the computer. I have a kidney infection. Enough about me,
Ashley is doing very well. I am able to walk her to the bathroom by
holding her hands, her therapists say she is doing very good. She is working
hard! It is becoming easier for her to use her right hand. She is now
trying to eat and write with it.

We have caught her trying to get up and walk by herself. My hope is in
the next couple of weeks she will up and running around.
Ashley goes to the clinic Wednesday and she will get her counts done. I
am going get her PET scan set up for sometime next week.

I am off to bed I am really tired and the tooth fairy needs to stop by
tonight for my son and as everyone knows she will not stop if anyone is
awake.

I will update in the next couple of days.

Norine (Ashley's mom)

bcjjhh

07-24-2003, 06:45 PM

Maryanne D. - April/03 Kid

Maryanne starts her next phase of chemo on August 6th providing their
aren't any delays in that time. This will be her last year of chemo (God
willing). This phase is only monthly visits to the clinic with 6MP
every night, methotrexate IM injections at home once a week, and the spinal
taps every twelve weeks. Maryanne is also looking forward to her
birthday on August 8th, she is asking for jewelry (necklaces, rings,
bracelets). Thank goodness she appreciates costume jewelry for now LOL.
Maryanne was also featured on the front page of our local newspaper last week.
This is such a small town that now everyone knows her.

http://www.townonline.com/maynard/news/local_regional/bv_covbvmaryannepnb07172003.htm

Keep up all the prayers for Maryanne because God is listening. Also
thank you to all who continue to send cards, stickers, and gifts to
Maryanne. She really does love the attention and we all really treasure how
much people care for her.

Sheryl (Maryanne's mom)

bcjjhh

07-24-2003, 06:46 PM

Christi T. - January/03 Kid

Christi's surgery (to be done March 25th, but her platelets were too
low) has been rescheduled for Thursday, July 24th. They will attempt to
remove her tumor along her spine and around her heart and insert a new
central line to allow her to continue her next treatment - whatever
that will be - we do not yet know. This surgery will be 24 hours after we
return from her Make a Wish trip where she has have an unbelievable
good time in Japan and Hawaii. God's people are great! Thanks for
everything!!

Angela (Christi's mom)

bcjjhh

07-24-2003, 06:46 PM

Chloe A. - January/03 Kid

After a relapse in February, Chloe received a stem cell transplant on
May 20, 2003. The stem cells came from cord blood from her baby brother,
Daniel Ryan. The entire family (mom, dad and seven children temporarily
relocated from Missouri to San Antonio, Texas for the transplant
process.

Chloe has been getting progressively better. She is feeling great. The
doctors' main concern now is relapse. They feel that everything that
can be done for her medically has been done. So, we are praying that the
disease will never return. We anticipate being able to go back to
Missouri at the end of July.

Trey (Chloe's dad)

bcjjhh

07-24-2003, 06:54 PM

July 24th, 2003
9:49pm EST

Hello to all,

The kids below have been placed on Inactive Status.

Please make note:
Jordan S. - May/03 Kid
Kaylee P. - August/02 Kid

Scroll down for a message from Kaylee's mom.

What is Inactive Status?
Please read more about it at
http://www.makeachildsmile.org/faqs.shtml#inactive

Alexandra Davila
Founder & President
Make A Child Smile Organization
http://www.makeachildsmile.org

----------------------------------------------------

I'd like to thank Alex and her volunteers for providing such a terrific
website to honor and recognize children and families who are struggling
with cancer and other life threatening diseases.

I'd especially like to thank all of the readers who took the time to
send Kaylee cards, gifts, pictures. Every single item was greatly
appreciated! I also want to thank a very special lady who we've never met...
Her name is Betty Ackley. She has sent 1-2 handmade cards every week
for over a year now. Thank you Betty, your cards are beautiful and so
are you. Kaylee's mailbox was never empty because of you!

Kaylee will be off of treatment for 1 year in September. She is doing
absolutely great. She looks and acts just like any other 4 year old
child. Hopefully, our situation won't change and we'll all continue
living healthy happy lives.

With that being said, I'd like to make Kaylee "inactive" on the MACS
site. I feel that children who are currently going through treatments
and are having a hard time should be receiving all of the attention.
Again, we can't thank the organization or the readers enough for their
encouragement, support and gifts throughout Kaylee's treatment. God
Bless!

Tammy (Kaylee P's mom)

valyar

07-26-2003, 06:06 PM

I already work with this group, among others, and it is great!! the kids are all so precious!

another great one is
www.hugsandhope.com

also
www.chemoangels.com

it is great to see others making these sweet monkeys smile!!

:D

farmmnger

07-26-2003, 06:42 PM

This is a great site. Going to bookmark it and send the kids cards.

bcjjhh

07-29-2003, 06:44 AM

Shelby D. - March/02 Kid

Shelby is doing great still! She is at Camp Quality
this week in Ky. It is a camp for kids with
life-threatening illnesses. She stays overnight and
each child gets their own companion (which cannot be a
family member). This is her third year going to camp
and it really is a great time for all the kids. We
are off chemo a year and a half and still have good
counts.

Not much else new here, which is usually a good thing.
Once again thanks for all the cards and letters,
Shelby enjoys them. I just wish she would write back
more.

Oh, we did receive our quilt from Love quilts and it
is beautiful. I will be sending them a pic of her
with the quilt once I get film developed.

Debbie (Shelby's mom)

bcjjhh

07-29-2003, 06:46 AM

PeeDee G. - May/02 Kid

Greetings -Thanks to all the people that have been so supportive. We
are dealing with issues relative to the exhaustive comprehensive nature
of the treating of the disease as well as some of the surrounding
variables indigenous to our situation. PeeDee is a little delayed in some
areas but maybe that will straighten out with proper schooling-he
qualifies for what is called a McKay scholarship which allows for him to go to
a private school-he was really in a jungle last year (but he liked it)!
Nevertheless, being off treatment has been a tremendous blessing-the
tiniest things of life bring great joy and we really hope that the
leukemia will stay away. Our deepest thanks for all the love and support
shown by all. We are indebted. We celebrate his 7th birthday today and I am
humbled to have my son alive.

Pat (PeeDee's dad)

bcjjhh

07-29-2003, 06:46 AM

Jacob P. - September/02 Kid

I can't believe how long it has been since I last updated here on
MACS..... Sorry....

Since my last update, we have been busy , of course !! What else is
new, right? Well, I finished the fast -track course I was in and hardly
had time to breathe but I finished with VERY good scores. I thought I
would have some time to regroup but Jake , his sister and myself all got
sick. Each took several trips to the doctor and with the help of various
medicines/shots etc., we have recovered... well, almost..... Jake has
been fighting an ear infection for almost a month now. 3 trips to the
doctor and three rounds of antibotics , 3 bottles of ear drops AND
finally an ENT visit... his ears are clear, the tubes are open and all seems
to be restored. He has one more week to finish the Augmentin ( massive
doses) that finally did the trick.

Other than the ear issue , medically things are O.K. . They DID,
however, increase his steroids a bit because the GVH ( graft vs. Host) is
relentless. His mouth and skin were flared up for a week or more and his
lips were extremely raw. On one hand, I was glad they did something to
help relieve the discomfort but on the other hand it just leaves me
wondering how long he will need the steroids. Sigh.

The steroids come with their own set of problems. His glasses , for
example, were needed because of cataract formation, due to prolonged
steroid use. Along with the steroids, comes mood swings and weight gain too.
One minute he is my loveable little sweetheart . The next minute, he is
nearly uncontrollable, sassy and mean. He has gained another 4 lbs.....
now almost 50 lbs. , very puffy cheeks and tummy. It doesn't seem to
fail..... when we are out in stores now , people point ,whisper and
stare. I have a hard time controlling the anger I feel about that ! Then I
think "what do they know?"........ Jake has a very outgoing personality
. He is EXTREMELY talkative and generally fun to be around. Why can't
they see what I see? He has fought so many battles to have come this far
and people make fun of him . Sigh.

I am SO thankful that USUALLY he is too engrossed in singing ,looking
at a toy or book, and riding in the basket to notice the rude gestures
and whispers.

Jake will celebrate his 3 yr. post transplant #2 ( the one that brought
him into remission!!! ) on Sept. 25th. He has lots of annual tests
coming up at the end of August . All the tests are to look for late side
effects, organ damage etc. It's all very intense while it lasts and it
sums up what concerns that they may have ...last year his kidneys were of
slight concern..they filtered very slowly , everything else OK ( I
THINK) It is also a perfect opportunity for them to check his donor status
...This test makes sure his sister's marrow is working hard inside to
keep him healthy and cancer -free. I love hearing 100% donor cells!!!!
As a matter of fact I will accept nothing less. Please remember us in
your prayers for all these tests.

It's nearly 2 Am here, so I better close this, but certainly not before
I thank everyone who continues to send cards, prayers, gifts and well
wishes. I went to the mailbox last evening, we haven't been in about 2
weeks ...Boy , was I surprised when I couldn't EVEN open it ...it must
be VERY full and jammed shut!!! THANK YOU , it will most assuredly
brighten one little boy's day !!! I'll go back tomorrow when they are open
so they can get everything out for him without damaging something. Until
next time .... Take care and be blessed,

Forever grateful,
Danette (Jacob's mom)

bcjjhh

07-29-2003, 06:47 AM

Christi T. - January/03 Kid

Hello Friends and Family,

It's late, but I wanted to get this update out to you so please forgive
my spelling, typos, etc. Christi's surgery was delayed for three hours
this morning. She was very hungry, but handled the wait well and went
in about 2:00 this afternoon. When it was over, we went with her to her
room in intensive care about 7:00 PM. She'll be there at least one
more day before going to a regular room. (We like this private room!!)
Both Shayne and I will stay with her - at least for this first night.

Dr. LaQuaglia felt that he was able to fully remove the entire tumor.
(Praise the Lord!!) He believes it had active neuroblastoma in it. (It
will be sent to pathology.) He also felt he was able to get out all of
the lymph nodes that the cancer had spread to around the original
tumor. He said that there was no NB in her spine or vertebres. (She's been
having neck pain. Perhaps it was one of the wild water slides at the
hotel while she was on her Make - a - Wish trip. She's a daredevil!!)
A new central line - this one a mediport, was inserted as you can see
from the pic. Dr. LaQuaglia went in through the original incision site
in her back and extended it to get all of the tumor out. Radiation will
be done later for the microscopic disease that remains. She didn't
need any units of blood they had ready for her. She only lost about an
estimated 9 ounces. Dr. Kushner did go into the operating room during her
surgery. Thanks prayer warriors for your divine intervention!!!
(Jeremiah 29:12 "Come and pray to me and I will listen to you.")

We'd like to thank our tremendous prayer warriors for being with
Christi and for making her surgery go as well as it could have today. There
were no surprises. Thank you! A special thanks to Lisa Marks,
Shayla's friend's awesome Mommy. Lisa picked up Shayla tonight at preschool,
fed her and entertained her at their apartment until she fell asleep
and I just picked her up about 10:00 PM. Also, a special thanks to Marty
and Jeff who have nearly arrived in the city as I type. They'll be
taking Shayla home for a few days so we can fully concentrate on Christi.
I'm glad as Christi didn't want me to leave tonight and she didn't want
Shayne to leave either. Finally, deciding that Shayne could go leave
and then come back. Finally, I convinvced her saying if Daddy went to
pack up Shayla's clothing he may get confused and pack her clothes by
mistake! THEN it was okay for me to go. She knows how Daddy always gets
confused if I don't put the girls' clothing out very specificially!

Christi is currently in a lot of pain, but the morphine is helping
tremendously. She has in her chest tube which is draining quite a bit of
fluid and blood from her lungs. Her cathedar and other tubes will
hopefully be removed soon. She is now breathing on her own. Her first
words were, "No! I don't want a mediport." when she realized what had
happened. She wanted a Broviac again, but a mediport is much less
dangerous, she can swim and she doesn't need a Broviac since she will not be
going through transplant. Her temperature is going up a bit with each
check, but I think that's "normal" following a major surgery like hers.

We thank God for guiding Dr. LaQuaglia and the surgical team today and
for those helping with her recovery. We thank our faithful, dedicated
prayer warriors who continue to get us through this nightmare of a
journey. Now we just need to figure out a way to get her bone marrow to
clear to beat this beast! (smile)

Angela (Christi's mom)

bcjjhh

07-31-2003, 04:58 AM

Abby O. - January/01 Kid

Dear Friends and Family:

Abigail is scheduled for her last (we hope) Pentamamine treatment on
August 5th. She will also have a blood test. If everything looks good we
are hoping to get her central line removed on August 8th. She will also
have a BMA at that time.
Abigail continues very slowly to gain strength. She still has some real
tough times and some periods of feeling blue. I think that is part of
her recovery process so we just are extra patient and kind to her when
she is having a hard time.
Abigail spends a lot of her time playing with her best friend Madison.
They play Barbies and with their American girl dolls. She also loves
reading Goosebumps books!
Yesterday she went to Madison's birthday party and had a ball at an
arcade with rides. She pretty much was able to get in and out of the rides
okay. And Madison was always with her to help her if she needed it.

Thank you for all the cards, gifts and prayers. God bless you.
Love,

Suzanne (Abby's mom)

bcjjhh

07-31-2003, 04:59 AM

Jennifer M. - November/98 Kid

Hi Everybody

After alot of discussion and weighing things out Jenn and I decided we
are going to go back to St. Christopher's for her care. Jennifer was at
St. Christopher's from the time she was 10 months old till she was 12.
Then the neurosurgeon then felt Jenn needed to go to a different
hospital because was so complicated. We never were 100% happy at Children's
but felt we should give it a try. Well after going to the ER last week
and having them tell us to go back to St Chris's cause they do not know
about the shunt Jenn has (St Chris placed it in 1999) we decided to
take all of Jenn's care over to there. By Spetember we will be completely
at St. Chris's and working with the docs in Pittsburgh too.

The neurosurgeon told us Jenn tumor is larger than her last scan (which
we knew) he said there is swelling in the brain and need to talk to the
Gamma Knife docs to see what their opinions are. How much they feel it
is swelling and how much they feel is tumor growth. He said if the
tumor gets much bigger it could be life threatening. :(( He said there is a
round of chemo we can try and surgery. That Jenn is running out of
treatments.

So the next steps are getting her films and reports out to Pittsburgh
and find out from them what they feel is going on and the treatments
they recommend.

Jenn was very upset and we had a very long talk and we went out to
dinner. (Her Aunt Debbie was there and that really helped alot) She is
trying so hard to keep a positive attitude (I said to her Jenn you are
handling this really well and she said Well it always seems to turn out ok)
I am very proud of her. I too am trying to be positive. It is very hard
when I hear all the thing the doctors are saying.

Well update after I hear from Pittsburgh.

Thanks so much for your love, support and prayers !

Reni (Jennifer Mom)

bcjjhh

07-31-2003, 05:00 AM

Jimmy K. - October/98 Kid
Hi everyone!! We have been putting off a trip to Disney for 5 Yrs.
while we waited for Jimmy to get "better". We realize now that he will
probably not get better as we had hoped, but we can try to control his
spasms with the meds, like we have. He is at 75% control and to up his meds
more would be that he would be sleeping all the time. That is why we
have not at home. He still has 1-2 bad spasms a day which we help him
through with tub soaks, etc. BUT we have a plan....... the Dr. said we
can up the meds and GO to Disney, perhaps all the visual stimulation will
keep him awake/alert enough to enjoy the Disney trip and remain
pain/spasm free!! Please continue praying for him, as we are really putting
everything we have into making this trip be a wonderful one for him. We
have to bring along a pressure cuff to make sure he doesnt fall to
low. (This is when having a hubby that is a Registered Nurse really
comes in handy!!:0) Thanks big Jim!!:0) Jimmy's new wheel chair, the tilt
and fold one he got last year, will be a blessing in the parks. Well,
Thats about it for now. Wish us luck as we venture off to see the little
Mouse that started it all!!!:0) Love, Lin, mom to Jimmy~~(attached
Jimmy's picture with mommy).

Lin (Jimmy's mom)

bcjjhh

07-31-2003, 05:00 AM

Chase C. - April/02 Kid

Chase had a good check-up in Atlanta. His labs were normal and his
weight is holding up pretty good since I have stopped giving him the ensure
at night per doctor's orders. He still has the NG tube. He starts
school August 8. Please pray for him. He has not been in a classroom in
nearly two years! He is still too weak to go a full day so we will try
half of a day. He will have an MRI next month. Thank you all for the
wonderful support you have given.

DeAnna (Chase's mom)

bcjjhh

07-31-2003, 05:01 AM

Christina M. - October/02 Kid

Good eveing everyone

I have some news to share with you all that I really am at a lose of
words.

My heart is heavy as I type this.

Yesterday, Monday, Christina and I went to see Dr. Wheeler, and after
looking at her and hearing her PFTs were down to 18%, and talking with
St Louis. He told me that it was time for oxygen and for Hospice.

I see a decline in Christina each day, she sits on the couch with labor
breathing patterns and when she moves around she is very short of
breath.

I questioned Dr. Wheeler as to his gut feelings, and he said he would
be
surprised if she made it to Christmas, maybe even Holloween.

I have been asked as to how I feel, Well I feel like an emotional
flurry, I have so many feelings all at the same time, I am not sure which
one is stronger.

I am asking that you would pray first and for most a MIRACLE of GOD,
but
also, if it is in His plan, no matter how I fight it, that He would be
merciful to my baby. And that He would give me wisdom to face what I
will have to in the coming months, weeks and days.

Also, if some of you who are reading this knows us personally and sees
us, please to NOT make mention of this to the boys, or Christina, I
have
talked with Josiah at leangth and I feel he has a good understanding,
but I have not mentioned it to Stephan at all.

As for Christina I have not said anything to her yet either, I think
she
knows in her own way, but ...... This will be the hardest thing for
me
to talk with her about,,, I need God's guidance and wisdom as to when
(if) and what I should talk about with her.

Well I need to go for now. I need to get some rest.

Thanks for Caring

Lori (Christina's mom)

bcjjhh

07-31-2003, 05:22 AM

Tiffany L. - December/01 Kid

Tiffany went in to the children's hospital last week for pain and is
still in there. The morphine is affecting her breathing and her liver so
the doctors are trying to take her off it. So far it is not working.
She is having to have oxygen every night to help her breath better. They
feel that is from all the pain meds. Please if you can ask all of your
friends to pray for her She is in so much pain and it is very hard on
her being in the hospital for this long. Thank you for cards that are
still coming they brighten her day. I will let you know how she is doing
as the week goes by. Today was the first break that I had all week and
that is only because my husband made me stay home to rest.
Thank you again for caring for Tiffany,

Annamarie (Tiffany's mom)

bcjjhh

07-31-2003, 05:23 AM

Christi T. - January/03 Kid

Hello Friends and Family,

It's late, but I wanted to get this update out to you so please forgive
my spelling, typos, etc. Christi's surgery was delayed for three hours
this morning. She was very hungry, but handled the wait well and went
in about 2:00 this afternoon. When it was over, we went with her to her
room in intensive care about 7:00 PM. She'll be there at least one
more day before going to a regular room. (We like this private room!!)
Both Shayne and I will stay with her - at least for this first night.

Dr. LaQuaglia felt that he was able to fully remove the entire tumor.
(Praise the Lord!!) He believes it had active neuroblastoma in it. (It
will be sent to pathology.) He also felt he was able to get out all of
the lymph nodes that the cancer had spread to around the original
tumor. He said that there was no NB in her spine or vertebres. (She's been
having neck pain. Perhaps it was one of the wild water slides at the
hotel. She's a daredevil!!) A new central line - this one a mediport,
was inserted as you can see from the pic. Dr. LaQuaglia went in through
the original incision site in her back and extended it to get all of
the tumor out. Radiation will be done later for the microscopic disease
that remains. She didn't need any units of they had ready for
her. She only lost about an estimated 9 ounces. Dr. Kushner did go into
the operating room during her surgery. Thanks prayer warriors for your
divine intervention!!! (Jeremiah 29:12 "Come and pray to me and I will
listen to you.")

We'd like to thank our tremendous prayer warriors for being with
Christi and for making her surgery go as well as it could have today. There
were no surprises. Thank you! A special thanks to Lisa Marks,
Shayla's friend's awesome Mommy. Lisa picked up Shayla tonight at preschool,
fed her and entertained her at their apartment until she fell asleep
and I just picked her up about 10:00 PM. Also, a special thanks to Marty
and Jeff who have nearly arrived in the city as I type. They'll be
taking Shayla home for a few days so we can fully concentrate on Christi.
I'm glad as Christi didn't want me to leave tonight and she didn't want
Shayne to leave either. Finally, I convinvced her saying if Daddy went
to pack up Shayla's clothing he may get confused and pack her clothes
by mistake! THEN it was okay for me to go. She knows how Daddy always
gets confused if I don't put the s' clothing out very
specificially!

Christi is currently in a lot of pain, but the morphine is helping
tremendously. She has in her chest tube which is draining quite a bit of
fluid and from her lungs. Her cathedar and other tubes will
hopefully be removed soon. She is now breathing on her own. Her first
words were, "No! I don't want a mediport." when she realized what had
happened. She wanted a Broviac again, but a mediport is much less
dangerous, she can swim and she doesn't need a Broviac since she will not be
going through transplant. Her temperature is going up a bit with each
check, but I think that's "normal" following a major surgery like hers.

We thank God for guiding Dr. LaQuaglia and the surgical team today and
for those helping with her recovery. We thank our faithful, dedicated
prayer warriors who continue to get us through this nightmare of a
journey. Now we just need to figure out a way to get her bone marrow to
clear to beat this beast! (smile)

Angela (Christi's mom)

bcjjhh

07-31-2003, 05:23 AM

Kimberley G. - October/00 Kid

Well itâ€™s been a while since I updated on Kimmie and the rest of the
family.

Kimmie has been having a few seizures again. She started them back
again the day I went in for my mammogram. I guess she wanted to keep pop
pop on his toes. She had a large one in the morning before I left and
than had two smaller ones while I was gone. She has had a few more off and
on since than. She woke me up toady having one. She seems to be ok now.
She still is eating well. She still loves to yell to the top of her
lungs. She will laugh her head off now if you say, â€œcome inâ€. I am not
sure why that is so funny but it her up.

Madison seems to be doing well. She does have more in her
again. We are waiting for them to run more tests on it. She just asks
why all the weird stuff has to happen to her. She has also has had
another small health issue that she told me I could not tell you about.
The dr. did give her some meds. for it so she is doing ok from that.
She just now has a new nickname from mom and dad. Her second hamster died
as well. She didnâ€™t have much luck with the male ones. I took her to
a different store and she now has a female one. She is doing great.
Keeps Madison awake at night. Madison was able to go the beach with
friends of ours for the day. She had a great time Thanks Jen. For taking her
along with you guys. Madison has been playing outside a lot this summer
with all the kids.

Like I said I went for my mammogram. I had felt a lump and went to the
dr. to get it checked out. The mammogram was nothing like I thought it
would be. Everyone says they hurt so bad. Well the pain I had from the
endometriosis was much worse than that. The lady that did mine was so
funny. I also had an ultrasound done as well. The dr. was there to read
the films while I waited. I am very happy to say what we felt was not a
lump but a gland. The dr. said that they could just be in different
places. He did say that I had fatty type tissue that could be felt as
well. He said that some women are just more lumpy than others. He said
to come back in 5 years unless I find anything else. I have a date for
my hysterectomy it will be Sept. 9. I can say that I am a little
scared.

I have found a great web site that has a lot of great info. on it.
Itâ€™s
just for women that have had or are having surgery. Itâ€™s nice to be
able to ask them all the weird questions. The part I dread about the
surgery most is not being able to do anything afterwards. I wont be able
to left.

Kimmie for at least 6-8 weeks. I am working on finding people that can
come in and help get Kimmie off the bus. Madison canâ€™t lift her. I
feel
so bad for Tony, he will have to do everything, cook, clean, wash the
clothes, take care of both kids as well as me. I will just be happy
when it is all over and I will be pain free.

Tony is doing well. He is getting ready for fantasy football. If you
donâ€™t know Tony he is a football freak. He heads up his own league.
Kimmie loves for him to pick her up and dance when his team scores.

Well thatâ€™s about it for now. Thanks again for every ones prayers and
support.

Love to all,

Mary (Kimberley's mom)

bcjjhh

08-01-2003, 05:56 AM

The children for August are up read about them here or go to the site www.makeachildsmile.org and see their photos and get their mailing addys if you care to send them a card or two.

William's Story
written by mom Beth

William was born March 31st, 1992 the second son and child of Beth and George. His older brother, George is 2 years older than he is. William was a healthy and beautiful baby.

All was well until William was finishing 2nd grade. He began running a fever and his lower abdomen hurt. After several weeks, the doctors finally realized it was his appendix and he had an emergency appendectomy. During his recovery, his white cell count never got back to normal and I felt something was not right. He ran a low-grade fever and said his arms hurt. The doctors thought I was crazy, as I continued to bring him in, even once asking if they thought it could be leukemia.

This went on for several weeks with his legs starting to hurt also. Finally, his pain was so severe that he could not walk and we took him to the Emergency Room and begged for help. Late that night after many tests, we were told he probably had leukemia. The next day we went to UNC Children's Hospital and the diagnosis of Acute Lymphoblastic Leukemia was confirmed June 6th, 2000.

He immediately began intensive chemotherapy treatment and was in the hospital for 10 days. His leukemia protocol was to be for 3 years consisting of a standard treatment for Acute Lymphoblastic Leukemia. While in the hospital, he received transfusions, had a port-a-cath surgically implanted in his chest so he could receive his chemotherapy, and began his cancer journey.

In the beginning, William went through an induction phase that plummeted his blood counts and kept him from virtually any activities. After this, he was in a consolidation period for 2 months. Then he began a time of delayed intensification. This was the hardest time for all of our family because it was when he lost his hair. Also the doctors said there was a 50/50 chance that William would be hospitalized with a life-threatening complication. The Lord was good and this did not happen. He was then able to enter long term maintenance.

Each night William takes approximately 6 pills and once a week an additional 10 pills on Thursday nights. Once a month, he goes to the clinic for chemotherapy in his port-a-cath and a 5-day pulse of prednisone. This drug is one of the worst for William, as it makes him extremely irritable, hungry, and emotionally volatile. Additionally, every 3 months, William goes to the clinic, is sedated, and has a spinal tap where more chemotherapy is injected intrathecally. At all his clinic visits, he of course, has blood counts done. The side effects he has bravely endured have been: nausea (many mornings he throws up, then goes right on to school), muscle weakness, leg and bone pain, jaw pain, back pain, sun-sensitivities, rashes, weight gain, hair loss, headaches and many, many others.

William continues to have the happiest disposition and perseveres in all that he does. He has maintained his grades in school, though he has been absent one week out of 4 for the past 3 years. He also played sports from soccer to basketball to baseball. Amazingly, he has never asked, "Why me?". In August, he will finish his treatment after having endured so much with grace, dignity and courage. We are all looking forward to a new beginning, but can honestly say there have been so many blessings along the way. Praise God!

bcjjhh

08-01-2003, 05:59 AM

Savannah's Story
written by mom Lisa

Savannah was born on March 9th, 1997. It took me three months on my back to get her here. Big sister Cassandra (Cassie) was a preemie. Savannah was little but beautiful at birth. Her sparkling blue eyes remained with her, but her hair changed from blond to red.

At two weeks she developed a fever and was hospitalized. Nothing was found. She suffered from ear infections until the age of four when her adenoids were removed. She got chicken pox at one year of age. Other then that, never sick.

She thrived. Savannah was quite normal in every respect. She was extremely articulate and had a creative imagination. Her quips would have children and adults rolling alike. The world was to be hers.

Two months into kindergarten, she began to have trouble. She would zone out, yell for no reason, spend lots of time attempting to use the bathroom, and the quality of her work plummeted. Her teacher suggested we have her tested for ADHD. The next day she was ataxic. First diagnosis, massive middle ear infection. However, she lost her fine motor skills at an alarming rate. Second diagnosis, Acute Cerebellar Ataxia. Her pediatrician contacted the Children's Hospital. They wanted to rule out a brain tumor, so the following day she had a MRI. It showed a large lesion in her brain stem. Third diagnosis, inoperable Diffused Pontine Brain Stem Glioma. Our world collapsed. This was the end of October 2002. She was supposed to grow up and be a neurosurgeon, not fight to make it to the age of seven. She and her sister were going to be life long best friends.

Savannah was never the same after the sedation from the MRI. Immediate radiation and high dosage of steroids were required. Within the next month she presented facial paralysis, left sided weakness, difficulty coughing and urinating, severe thrush, and she could not stay in a sitting position. You had to tell her to chew her food and then to swallow. What happened to my baby? My dreams for her and her sister? Chemo began in January and continues today. She has tolerated that extremely well. These children are stronger and braver then any adult I have ever met.

It was not until I forced steroid weaning that she began a long road to regaining her former self. The steroids took their toll on her little 40 lb frame. She swelled to almost 60lbs, could not rest or be still, got colds which took forever to get over, developed large kidney stones in both kidneys which cannot pass, her personality became flat, could not smile, and could barely walk. The list went on. During this time Quality of Life became my driving force. Regardless of the time allowed to us, I owed a lifetime to my daughter.

She returned to kindergarten after a 5 month absence. I never thought she would make it back. I am so thankful that I was wrong. Her school and class accepted her with great love, tenderness, and support. She takes PT and OT after school.

Her muscles are slowly getting stronger. She no longer sees double, her hearing has returned, her words are no longer slurred, she can almost walk a straight line, and has regained her fine motor skills. Her latest MRI shows new enhancements away from the brain stem. The doctors do not know what they are. Possible radiation necrosis or new tumor growth. But she remains stable at the moment. And every moment of health is a gift.

bcjjhh

08-01-2003, 06:03 AM

Katie's Story
written by mom Lind

Katie was due to be born on Christmas Day, but not to be outdone by Santa (or anyone else) she decided to arrive on January 3rd, 1998. She was a healthy, spunky 9-pound baby. From the very beginning she did things on her terms, in her own good time. I think she may have been born smiling.

Everywhere we went, Katie would smile and flirt and squeal and squawk - yes, squawk- when she was really happy she’d make this squawk that sounded like a wild bird! She would be so happy she just couldn’t contain herself!

Katie loves music - from the very beginning she would dance and bop when music was playing. I took her to MusicTime classes where we would dance, play instruments and sing along. We would play her favorite tapes everywhere we went. She would bring them to nursery school with her. We would even listen to her tapes on the way to school and on the way home. Katie and her big sister love to “put on a show”. They pull clothes out of the dress-up box, choreograph a little number, draw up programs, put on the music and go wild.

Towards the end of 2002, we were in the process of renovating a house and packing up to move. From time to time Katie would complain about being tired, but we were all tired - renovating, packing and moving Christmas week. We all seemed to be settling in. In February, Katie and I both came down with a terrible virus. Since we both had the same symptoms I didn’t think anything of it. Then I came down with Acute Bronchitis and Katie came down with an ear infection. We were both seen by our doctors and treated with antibiotics.

It wasn’t until the day that Katie was on the couch and yelled to me that she was too tired to get dressed and I walked in the living room and saw the bruises - the strange rotten-banana color bruises; and I saw she had a very minor nose bleed; and then Katie says “My ribs hurt and I have bone pain and I’m too tired to walk” and my head started to spin. Immediately I thought of Leukemia. I looked up the symptoms in a medical book a friend gave me a couple of years ago and the symptoms were text book.

I called the doctor and got an appointment. The doctor was comforting, so I calmed down a bit - but I requested the blood work and she didn’t try to talk me out of it. I’ll never forget the day - March 6th, 2003 - we were having a blizzard here in New York and the pediatrician called to say that Katie’s lab results were “alarming” and we needed to see a Hematologist Oncologist immediately. We said today? In this storm? We made it to the oncologist and within 20 minutes she confirmed our worst fears - Acute Lymphoblastic Leukemia. Within an hour or so Katie was admitted to the Hospital.

Katie is so strong and brave. She has responded well to treatment and is in remission. She is now in Interim Maintenance. It was a nice “break” to have monthly hospital visits instead of weekly. Katie played with her soccer team a little (her mom is the assistant coach). She missed two months of school but went back for the last month; she is due to start Kindergarten in the fall. We just returned from Camp Sunshine in Maine. Camp Sunshine is a place for families to go when there is a child with a life-threatening illness in the family. It was a wonderful experience! Katie really got to put her love of performing to work during the Talent Show. She got up on stage in her “hippy” costume from last Halloween and danced to her latest favorite: “This is what dreams are made of” from the Lizzie McGuire Movie soundtrack. (She adores Lizzy McGuire/Hillary Duff).

Katie is starting Delayed Intensification the end of June 2003, and will be on it July and August. We will have more frequent visits to the hospital, more meds to take. Most likely her counts will be low and probably won’t feel up to doing many of her favorite summer activities like swimming and biking. We are hoping she gets her strength back in time to join her friends in Kindergarten. We hope she keeps on smiling.

Katie is the 3rd child for the month of August anything after this is updates from perviously featured children.

bcjjhh

08-01-2003, 06:03 AM

**Reminders**

--August Birthdays--
05th (1997) Kady L. - December/02 Featured Kid
08th (1995) Maryanne D. - April/03 Featured Kid
13th (1998) Branen G. - September/01 Featured Kid
16th (1990) Mace' T. - June/02 Featured Kid
25th (1996) Kaelei M. - April/02 Featured Kid

--August Angel Anniversaries--
14th (2001) Christopher S. - August/01 Featured Kid

bcjjhh

08-01-2003, 06:03 AM

Katia S. - March/03 Kid

Thank you so much for always keeping up with Katia. Our family feels
so blessed to have met so many nice people! Katia is doing very well
and enjoying a wonderful summer with her sisters and Mommy and Daddy.
Katia is just a jewel for us to have and we are so thankful for her
health. Katia loves her mail, I mean LOVES her mail!!!

I update her website daily and in so doing have met so many wonderful
families and their children also fighting cancer along with other
diseases. Before Katia was diagnosed, I would have never imagined meeting all
of these wonderful people and hearing their amazing stories. That is
what amazes me.

Many of you do not have children affected by cancer but yet, you came
to MACS website to try to bring a smile to the faces of those fighting
these diseases. May God bless you and your family! Thank you so very
much. Love,

Tracy (Katia's mom)

bcjjhh

08-04-2003, 04:16 AM

http://www.makeachildsmile.org/images/03kids/katie_lg.jpg

Name: Katie
Age: 5 years old
Date of Birth: January 3rd, 1998
Main Diagnosis: Acute Lymphoblastic Leukemia

Mom: Lind
Dad: Edward

Mailing Address:
Katie S.
P.O. Box 8523
Tarrytown, NY
10591 - U.S.A.

Abilities, Siblings & Interests

Thanks to Ron, postal worker at the Tarrytown Post Office for splitting up the cost of Katie's PO Box with her mom

Katie's Story
written by mom Lind

Katie was due to be born on Christmas Day, but not to be outdone by Santa (or anyone else) she decided to arrive on January 3rd, 1998. She was a healthy, spunky 9-pound baby. From the very beginning she did things on her terms, in her own good time. I think she may have been born smiling.

Everywhere we went, Katie would smile and flirt and squeal and squawk - yes, squawk- when she was really happy she’d make this squawk that sounded like a wild bird! She would be so happy she just couldn’t contain herself!

Katie loves music - from the very beginning she would dance and bop when music was playing. I took her to MusicTime classes where we would dance, play instruments and sing along. We would play her favorite tapes everywhere we went. She would bring them to nursery school with her. We would even listen to her tapes on the way to school and on the way home. Katie and her big sister love to “put on a show”. They pull clothes out of the dress-up box, choreograph a little number, draw up programs, put on the music and go wild.

Towards the end of 2002, we were in the process of renovating a house and packing up to move. From time to time Katie would complain about being tired, but we were all tired - renovating, packing and moving Christmas week. We all seemed to be settling in. In February, Katie and I both came down with a terrible virus. Since we both had the same symptoms I didn’t think anything of it. Then I came down with Acute Bronchitis and Katie came down with an ear infection. We were both seen by our doctors and treated with antibiotics.

It wasn’t until the day that Katie was on the couch and yelled to me that she was too tired to get dressed and I walked in the living room and saw the bruises - the strange rotten-banana color bruises; and I saw she had a very minor nose bleed; and then Katie says “My ribs hurt and I have bone pain and I’m too tired to walk” and my head started to spin. Immediately I thought of Leukemia. I looked up the symptoms in a medical book a friend gave me a couple of years ago and the symptoms were text book.

I called the doctor and got an appointment. The doctor was comforting, so I calmed down a bit - but I requested the blood work and she didn’t try to talk me out of it. I’ll never forget the day - March 6th, 2003 - we were having a blizzard here in New York and the pediatrician called to say that Katie’s lab results were “alarming” and we needed to see a Hematologist Oncologist immediately. We said today? In this storm? We made it to the oncologist and within 20 minutes she confirmed our worst fears - Acute Lymphoblastic Leukemia. Within an hour or so Katie was admitted to the Hospital.

Katie is so strong and brave. She has responded well to treatment and is in remission. She is now in Interim Maintenance. It was a nice “break” to have monthly hospital visits instead of weekly. Katie played with her soccer team a little (her mom is the assistant coach). She missed two months of school but went back for the last month; she is due to start Kindergarten in the fall. We just returned from Camp Sunshine in Maine. Camp Sunshine is a place for families to go when there is a child with a life-threatening illness in the family. It was a wonderful experience! Katie really got to put her love of performing to work during the Talent Show. She got up on stage in her “hippy” costume from last Halloween and danced to her latest favorite: “This is what dreams are made of” from the Lizzie McGuire Movie soundtrack. (She adores Lizzy McGuire/Hillary Duff).

Katie is starting Delayed Intensification the end of June 2003, and will be on it July and August. We will have more frequent visits to the hospital, more meds to take. Most likely her counts will be low and probably won’t feel up to doing many of her favorite summer activities like swimming and biking. We are hoping she gets her strength back in time to join her friends in Kindergarten. We hope she keeps on smiling.

Abilities:

See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: Not yet, she reads and writes the alphabet and some simple words and is learning more every day.
Use hands: Yes.

Siblings:
sister Chloe, age 9

Child's Interests:
Katie loves: Art - painting, sculpting, drawing. Arts and crafts. Loves reading (or being read to) just about anything but current favorites are American Girl Series, Magic School Bus series. TV - The Lizzie McGuire Show, Kim Possible, Stanley, Magic School Bus. Loves puzzles and making things. Loves the computer and loves music!

Sibling's Interests:
Chloe loves gymnastics, swimming, soccer, art, piano, reading (just got the new Harry Potter) and playing with friends!

bcjjhh

08-04-2003, 04:17 AM

http://www.makeachildsmile.org/images/03kids/savannah_lg.jpg
Name: Savannah
Age: 6 years old
Date of Birth: March 9th, 1997
Main Diagnosis: Diffuse Intrinsic Pontine Glioma

Mom: Lisa
Dad: Mark

Mailing Address:
Savannah H.
P.O. Box 144
Russellville, AR
72811-0144 - U.S.A.

Abilities, Siblings & Interests

Savannah's Story
written by mom Lisa

Savannah was born on March 9th, 1997. It took me three months on my back to get her here. Big sister Cassandra (Cassie) was a preemie. Savannah was little but beautiful at birth. Her sparkling blue eyes remained with her, but her hair changed from blond to red.

At two weeks she developed a fever and was hospitalized. Nothing was found. She suffered from ear infections until the age of four when her adenoids were removed. She got chicken pox at one year of age. Other then that, never sick.

She thrived. Savannah was quite normal in every respect. She was extremely articulate and had a creative imagination. Her quips would have children and adults rolling alike. The world was to be hers.

Two months into kindergarten, she began to have trouble. She would zone out, yell for no reason, spend lots of time attempting to use the bathroom, and the quality of her work plummeted. Her teacher suggested we have her tested for ADHD. The next day she was ataxic. First diagnosis, massive middle ear infection. However, she lost her fine motor skills at an alarming rate. Second diagnosis, Acute Cerebellar Ataxia. Her pediatrician contacted the Children's Hospital. They wanted to rule out a brain tumor, so the following day she had a MRI. It showed a large lesion in her brain stem. Third diagnosis, inoperable Diffused Pontine Brain Stem Glioma. Our world collapsed. This was the end of October 2002. She was supposed to grow up and be a neurosurgeon, not fight to make it to the age of seven. She and her sister were going to be life long best friends.

Savannah was never the same after the sedation from the MRI. Immediate radiation and high dosage of steroids were required. Within the next month she presented facial paralysis, left sided weakness, difficulty coughing and urinating, severe thrush, and she could not stay in a sitting position. You had to tell her to chew her food and then to swallow. What happened to my baby? My dreams for her and her sister? Chemo began in January and continues today. She has tolerated that extremely well. These children are stronger and braver then any adult I have ever met.

It was not until I forced steroid weaning that she began a long road to regaining her former self. The steroids took their toll on her little 40 lb frame. She swelled to almost 60lbs, could not rest or be still, got colds which took forever to get over, developed large kidney stones in both kidneys which cannot pass, her personality became flat, could not smile, and could barely walk. The list went on. During this time Quality of Life became my driving force. Regardless of the time allowed to us, I owed a lifetime to my daughter.

She returned to kindergarten after a 5 month absence. I never thought she would make it back. I am so thankful that I was wrong. Her school and class accepted her with great love, tenderness, and support. She takes PT and OT after school.

Her muscles are slowly getting stronger. She no longer sees double, her hearing has returned, her words are no longer slurred, she can almost walk a straight line, and has regained her fine motor skills. Her latest MRI shows new enhancements away from the brain stem. The doctors do not know what they are. Possible radiation necrosis or new tumor growth. But she remains stable at the moment. And every moment of health is a gift.

Abilities:

See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: No.
Use hands: Yes.

Siblings:
sister Cassie, age 8

Child's Interests:
Savannah's main interests are projects. Loves cutting, glueing, etc. She fills up sticker books at an enormous rate. She loves horses, cats, and puppies. She loves to dance. She will dance to anything. She likes Strawberry Shortcake, Pokemon, Power Rangers (she always wanted to take Karate). She helps cook all the time.

Sibling's Interests:
Cassie loves dolphins. Other interests include Mary Kate and Ashley anything, coloring fuzzy marker boards, reading, Junie B. Jones, gymnastics. She loves science! She's a peewee cheerleader and is in Girl Scouts.

bcjjhh

08-04-2003, 04:17 AM

http://www.makeachildsmile.org/images/03kids/william_lg.jpg
Name: William
Age: 11 years old
Date of Birth: March 31st, 1992
Main Diagnosis: Acute Lymphoblastic Leukemia

Mom: Beth
Dad: George

Mailing Address:
William Edward S.
PMB #177
4441 East Six Forks Road
Suite 106
Raleigh, NC
27609 - U.S.A.

Abilities, Siblings & Interests

Thanks to Ed Binanay, owner of The UPS Store #3938 in Raleigh, NC for providing a Box to William free of charge

William's Story
written by mom Beth

William was born March 31st, 1992 the second son and child of Beth and George. His older brother, George is 2 years older than he is. William was a healthy and beautiful baby.

All was well until William was finishing 2nd grade. He began running a fever and his lower abdomen hurt. After several weeks, the doctors finally realized it was his appendix and he had an emergency appendectomy. During his recovery, his white cell count never got back to normal and I felt something was not right. He ran a low-grade fever and said his arms hurt. The doctors thought I was crazy, as I continued to bring him in, even once asking if they thought it could be leukemia.

This went on for several weeks with his legs starting to hurt also. Finally, his pain was so severe that he could not walk and we took him to the Emergency Room and begged for help. Late that night after many tests, we were told he probably had leukemia. The next day we went to UNC Children's Hospital and the diagnosis of Acute Lymphoblastic Leukemia was confirmed June 6th, 2000.

He immediately began intensive chemotherapy treatment and was in the hospital for 10 days. His leukemia protocol was to be for 3 years consisting of a standard treatment for Acute Lymphoblastic Leukemia. While in the hospital, he received transfusions, had a port-a-cath surgically implanted in his chest so he could receive his chemotherapy, and began his cancer journey.

In the beginning, William went through an induction phase that plummeted his blood counts and kept him from virtually any activities. After this, he was in a consolidation period for 2 months. Then he began a time of delayed intensification. This was the hardest time for all of our family because it was when he lost his hair. Also the doctors said there was a 50/50 chance that William would be hospitalized with a life-threatening complication. The Lord was good and this did not happen. He was then able to enter long term maintenance.

Each night William takes approximately 6 pills and once a week an additional 10 pills on Thursday nights. Once a month, he goes to the clinic for chemotherapy in his port-a-cath and a 5-day pulse of prednisone. This drug is one of the worst for William, as it makes him extremely irritable, hungry, and emotionally volatile. Additionally, every 3 months, William goes to the clinic, is sedated, and has a spinal tap where more chemotherapy is injected intrathecally. At all his clinic visits, he of course, has blood counts done. The side effects he has bravely endured have been: nausea (many mornings he throws up, then goes right on to school), muscle weakness, leg and bone pain, jaw pain, back pain, sun-sensitivities, rashes, weight gain, hair loss, headaches and many, many others.

William continues to have the happiest disposition and perseveres in all that he does. He has maintained his grades in school, though he has been absent one week out of 4 for the past 3 years. He also played sports from soccer to basketball to baseball. Amazingly, he has never asked, "Why me?". In August, he will finish his treatment after having endured so much with grace, dignity and courage. We are all looking forward to a new beginning, but can honestly say there have been so many blessings along the way. Praise God!

Abilities:

See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: Yes.
Use hands: Yes.

Siblings:
brother George, age 13

Child's Interests:
William loves collecting football and basketball trading cards, reading sports magazines, playing PlayStation 2 video games, renting Blockbuster games, water balloon fights, UNC memorabilia, collecting sports autographs, Subway, Burger King and Baskin Robbins ice cream.

Sibling's Interests:
George likes to go fishing, hunting (birds only), University of North Carolina sports, paintball, yard work and gardening. He also likes Country music and lacrosse.

bcjjhh

08-04-2003, 04:18 AM

Casey L. - July/99 Kid

Casey has done well this summer. He did not go to summer school but
instead stayed home and went in the pool, rested,and watched Wiggles and
Blues Clues. The only times we took him out were to go to therapies. Now
that school starts this week, we are hoping he continues to do well. He
usually gets overexcited with the kids at school and then tires himself
out. He didn not do well at school last year in the regular ed.
placement and so this year we are going to try halfdays into the special ed.
class in another school. His seizures appear to be pretty well
controlled right now and we have had 3 years free of the shunt troubles. I
won't talk too much about that because when I do that, he then instantly
has a problem!! Thanks to all of you for the cards and gifts.

Angela (Casey's mom)

bcjjhh

08-04-2003, 04:18 AM

Tiffany L. - December/01 Kid

Tiffany came home today after being in the hospital for 11 days. We are
so happy to have her home. She is doing really well for the moment. She
does not need to have the oxygen like the doctors were thinking. Thank
God ! Now all we want to do is rest for the rest of summer. Thank you
for praying for her.
Thanks,

Annamarie (Tiffany's mom)

bcjjhh

08-09-2003, 04:40 AM

Kaelei M. - April/02 Kid

Kaelei and I will be leaving Monday, 4th, for Little Rock again. She
will haev another MRI and brain tumor clinic on Tuesday. I am praying
that all goes well.

We recently found out that we will be receiving tickets to see The Lion
King at the Orpheum Theatre in Memphis, TN. We all are SO excited about
this !! They are donating the show tickets and a hotel room for that
night! It looks like we will be going right around Christmas- either the
weekend before or the weekend after. We can hardley wait!!!!!!

Kaelei has been having a great summer so far. I just can't believe it's
almost over. 2 more weeks and then school starts! Both Kaelei and Holli
will be in the first grade. My babies are growing up too fast. It will
be a busy month. Kaelei and Holli both have birthdays this month, and
they will start school all in a period of 3 weeks. It will be pure
craziness around her I'm sure!

Well, I just wanted to check in. I will post when we get her MRI
results.

Jennifer (Kaelei's mom)

bcjjhh

08-09-2003, 04:43 AM

Katelynn M. - October/02 Kid

Howdy everyone,

Well it has been a hectic summer. First I lost my job due to
downsizing. I did find one a few weeks later. I was able to stay home with the
girls for a week and a half. I'm a hair dresser and I can walk into
almost any salon and get a job, but the week after I got laid off (from a
non hair job) the girls would be out of school and I stayed home with
them. Then the next week after that they started summer camp. Katie
and her sister Alyssa have been going to summer camp through the parks
and recreation of our city. They go Monday thru Friday 9am to 3pm. It
is wonderful because we don't have to find a baby sitter. Then in July
Katie went to Camp Quality. It is a cancer camp. It was really awsome
because they take syblings. So we had a whole week with just each
other. The girls had a great time. Then Katie was home for a week and
then she was off to camp again. This time it was Camp Friendship through
the American Cancer Society. Once again she had a great time. She
enjoyed being all by herself. We also went to Kings Island in Cinncinatti
a few months back and then a few weeks later we went to Hershey Park in
Hershey PA. That was a lot of fun. We had a blast. We are planning
to go to Ceader Point next Wednesday. These are all part of Katie's
extended wish trip. They gave her one pass to any park in there circle of
parks in the world for up to one year. So we're trying to get them all
in. That will be our vacation for the year since Kevin has no time due
to taking off when Katie was going to the doctor every week, and I
didn't get any since I was part time. Well in about 3 weeks it will be off
to school for them. It seems like it has been such a short summer.
It's almost over.

Once again thanks to all of the love and support y'all have shone to
Katie and our family.

Love to all,
Donna (Katelynn's mom)

bcjjhh

08-09-2003, 04:44 AM

Kaelei M. - April/02 Kid

We are back from Kaelei's MRI and everything is clear!! What a relief.
Even though I had done really well this time, keeping my nerves under
control, yesterday when I was dropping Holli off at my sister's I lost
it. I broke down and just sobbed. Cried for about 45 minutes on the road
and then was fine. I know- sounds stupid, but even when you are really
and truly confident that you will get a good report you can't help but
be scared. After all, she is my little girl.

Anyways- the MRI went really well. She was easily sedated and woke up
fairly well. We went to BT Clinic and saw one of the neurosurgeons and
he said all was good. None of our usual docs were there so low and
behold we were out of clinic in about 45 minutes!! Pure madness! We have
never been there for less than a couple hours! It was a nice treat. There
were some things I really needed to discuss with one of the docs, but
he was out for the week, so I'll have to get in touch with him next
week.

Well, I am very tired and the girls are already fighting, so I better
go for now.

Thanks for your prayers and support,

Jennifer (Kaelei's mom)

bcjjhh

08-09-2003, 04:44 AM

Ricky W. - November/00 Kid

I want to apologize first of all for this late update. I can't believe
it's been three months already! Our lives have been very tumultuous
with the upcoming criminal proceedings against the boys' father and
other things that have been going on so time has really flown by.

Ricky was at the CF clinic today for his 3 month checkup and he is
doing great. He's at 90something percentile for height (4'3") and
50something percentile for weight (60.5 lb.). His lungs sounded
great. His oxygen saturation was at 96% and he had his best pulmonary
function test ever. Great news all around. We're supposed to stuff
more calories into him (as always!) in the way of Ensure Plus shakes.

Since April Ricky has been going to a private school for kids with
learning difficulties and he's been doing great there. He is just
about to finish summer school and then he will be in second grade
starting at the end of this month.

Andy, Ricky's brother, will be starting kindergarten this fall. He is
very excited. He already knows how to read and how to do simple math,
and enjoys making word puzzles and mazes for other people to do.

This summer the boys have been keeping busy with their Slip 'n Slide,
swinging on the swingset, and going to the park. We have also taken up
a hobby called geocaching (I can't remember if I have mentioned it
before), and it's lots of fun. If anyone is interested you can check
it out at http://www.geocaching.com.

Again I want to thank everyone who has sent cards and gifts to the
boys. They sure look forward to visiting their PO box!

I'd like to send updates more often, so I'm planning on setting a
reminder in my email program at work. If it works, you can look for an
update from me around the first of every month. Wish me luck!

Rebekah (Ricky's mom)

bcjjhh

08-09-2003, 04:44 AM

Chad C. - June/03 Kid

Chad had his new port accessed for the first time sense being placed
last month. His counts and monthly check up went good and look good. He
and his brother leave on the 10th of this month to CAMP for a week!
Excitement is in the air...

Hugs,

Jeannie (Chad's mom)

bcjjhh

08-09-2003, 04:45 AM

Sarah B. - May/03 Kid

Sarah is doing well and enjoying her summer vacation. She tolerated the
July surgery on both eyes extremely well and is currently waiting for
new corrective lenses. In July, she was casted for new leg braces and
after receiving them, ordered the new shoes in which the braces will fit.
A lift was then built and put on the right shoe, finally squaring her
away on the orthropedic issue.

Debra (Sarah's mom)

bcjjhh

08-09-2003, 04:45 AM

Abby O. - January/01 Kid

Greetings:

Abigail is scheduled to get her central line removed tomorrow (August
8th). She will also have a BMA at that time. Please pray for Abigail
that all goes smoothly and that the test result of her BMA is cancer free.
Thank you.

Love,
Suzanne (Abby's mom)

bcjjhh

08-09-2003, 04:45 AM

Stephen L. - May/02 Kid

Stephen is continuing to do well. He weaned off his last
immunosuppressant this month and will discontinue the antibiotics that
are precautionary later this month. They are planning on testing his
immune system in October.
The only setback we have had is that he has cataracts in both eyes
from the heavy doses of steroids and has had one mole removed that was
precancerous.
Other than that he is your typical teenager. He made a lamp for an
electric 4H project out of his first ice hockey helmet and it won first
place at the county fair and is currently at the state fair. He had a
blast being involved in all the 4H activities this year that he wasn't
able to do last year.
Thanks for all the support and prayers.

Stephanie (Stephen's mom)

bcjjhh

08-09-2003, 04:46 AM

Connor H. - March/02 Kid

Connor is doing O.K. right now. He has had an infection for the past
two weeks that we have been treating with I.V. antibiotics at home. He
will be admitted this coming Tuesday, Aug. 12, for his next chemo.
His marrow has taken quite a beating with all of the chemo that he has
received, so he is having to have several transfusions each month. He
does not get to start back to school with his friends. He has to be
home-bound until he is finished with treatment, which will probably be in
January or February,2004. Please say a prayer that he he keeps
responding to his chemo, and most of all, that the cancer NEVER returns. Thank
you to everyone of you for all you do to encourage Connor, you guys are
the best!

Love and hugs,

Rhonda (Connor's mom)

bcjjhh

08-09-2003, 04:46 AM

Jimmy K. - October/98 Kid

Hi everyone!! We made it to Disney for 4 wonderful days. It was so good
to be back after not going for 5 yrs!! Jimmy's meds were upped and he
seemed very relaxed. The Dr. was right the visual stim. kept him awake
enough to enjoy the characters and a few rides too!! The spasming he did
have was minimal. Out of 4 days we had 2 that rained. Either it was
hot, hot, hot or raining. lol. But being from Fla. we are use to this.
Jimmy didnt mind the rain and thought it was cool that mom could push the
wheel chair and juggle the umbrella over him too. He liked kicking off
his socks and getting his feet wet from the rain. The vacation was
literally "just what the Dr. ordered" and a true blessing for us all to get
away for a few days. Mike and Amy had a blast and dragged me on Space
Mountain!!! lol. Back home Jimmy's meds had to be lowered again because
he was sleeping all day. The minute he'd be left alone he'd fall
asleep. This wasnt good. So, I imagine his 1-2 spasms a day will re-appear
again too, which wont be good. We see the Neurologist again in Sept. so
maybe he will have something new for us! Yesterday we were at my
sister's house and 2 hrs. after we left her area it was hit with a tornado. It
did a lot of damage turning over a Fed-Ex truck & a tractor trailer.
Homes were destroyed. I think they said it clocked in at a F2. We didnt
get anything but rain and by the time we got rain, the tornado fizzled
out to sea. Thankfully!!! No deaths so far but damage galore. Mother
Nature was in full force yesterday!! Along with Jimmy's update, I wanted
to thank everyone for sending the great cards and stickers to Little
Jim!! He loves his mail that daddy brings home to him and smiles from ear
to ear when I read him the sentiments. Thank you all again.

Lin (Jimmy's mom)

bcjjhh

08-12-2003, 03:59 AM

Bailey J. - December/01 Kid

Bailey has been having a great summer full of camping, playing at the
beach, boating, water slides...

He is scheduled for scans next week and I will update more when we have
the results.

Thanks for the continue prayers...

Kelly (Bailey's mom)

bcjjhh

08-12-2003, 03:59 AM

Branen G. - September/01 Kid

Hello everyone!

Well it's been a busy summer and Branen has been doing well. We've
made it through with no colds and no hospitalizations. We decided to take
Branen to the Mayo Clinic in Rochester, MN for a second opinion on his
CF care. We found out a lot of things that we should have been doing
the last five years. Nothing drastic, but things that will help with
his care.

We are getting ready for school this year. Branen will be five on the
13th of this month. Wow! Time goes by fast. We've decided to hold
him back one year and have him enter kindergarten next year. He was
upset a little, but he well still go to 4 year old kindergarten 2 days a
week.

Thanks everyone for the wonderful cards and already birthday cards.
Branen enjoys getting them everyday.

Sincerely,

Erin (Branen's mom)

bcjjhh

08-12-2003, 03:59 AM

Cameron S. - December/02 Kid

Cameron is doing great. He did have a rough couple of weeks in July,
right before his Make A Wish trip to Give Kids the World and Disney. He
had a stomach virus that lasted 10 days, then started running a temp
that landed him in the hospital for 3 days, then ended up with a sinus
infection. Poor guy lost what little weight he had gained since he
finished chemo in March. Right now we're keeping an eye on his Thyroid
Stimulating Hormone (TSH) level - it's higher than it should be. Hopefully it
will regulate on it's own and he won't require medication.

Cameron starts 1st grade on Thursday (Aug.14) and is very excited to be
going - especially since he missed all of Kindergarten last year.

Thank you MACS family for featuring Cameron on your site. He still gets
occaisional mail from people that read about him on the MACS site and
loves every bit of it!

Sheri (Cameron's mom)

bcjjhh

08-12-2003, 04:00 AM

Samantha R. - January/02 Kid

Sammi has been doing well lately. She had one small episode of
neutropenia, but thankfully stayed healthy. Samantha also celebrated her 6th
birthday on July 21. Thank you to all who sent cards/gifts. Samantha
really enjoyed them. She is learning to read and is excited to have new
things to read.

Only 5 months of treatment left!!!

Dirk (Samantha's dad)

bcjjhh

08-12-2003, 04:00 AM

Austin W. - September/02 Kid

Hi everyone. Hope you are all doing well. Austin is doing good right
now. He is anxiously awaiting the start of his second grade year.
They start on Monday the 18th. We found out on Friday that his doctor is
going to send him to Houston to be evaluated for a liver transplant.
At first she was going to wait until he got sick again but has decided
to go ahead and send him. When he was in the hospital in June, they
found several more cysts in his liver and drained the large one they found
last year in July. They have determined these are simple cysts and it
is very extremely rare for biliary atresia kids to develop these cysts.
I am not sure when we are going exactly but I figure in the next two
weeks. Please continue to pray for us and for him. May God bless you
and keep you all in His loving care.

Becky (Austin's mom)

bcjjhh

08-12-2003, 04:00 AM

Ronnie R. - February/02 Kid

Ronnie is doing well, and will be finishing up his 3+ years of chemo
next month.
Its a little weird to be thinking of actually stopping the chemo, the
thought of stopping it is as scary as having to start it was. But
he is doing well and will be starting first grade, and thats all we can
ask.
Thanks to everyone who is so faithful to all these kids.

Christine (Ronnie's mom)

bcjjhh

08-12-2003, 04:01 AM

John M. - June/98 Kid

We spent last week in Daytona Beach, it was great, what beach isn't?:)

John's starting 7th grade tomorrow. Tommy started 1st today. We're
hanging in there. Nothing to report healthwise...same stuff, we cath him
4x a day.

He has a new "service dog" she's a lapdog...a mutt from the pound and
her name is Phoebe. She helps with Tommy too, he's learning to be
kinder and gentler:)

Julie (John's mom)

bcjjhh

08-12-2003, 04:01 AM

Jennifer M. - November/98 Kid

Hi Everybody !!

Well we got great news !! The doc from Pittsburgh who did the gamma
knife called (finally) and said HE feels that the tumor is not that much
larger than the scan she had before the gamma knife and that he feels it
may be swelling. (Which is why she is having the weird spells and blur
vision) He said unless she had more serious problems that she can wait
till October for her next MRI. He said he like to see her wean down off
the steriods and use a eye patch at home to help with the eyesight.
Bottom line he said "Sit Tight" So that is what we are going to do !! I am
so happy that he didn't say it it tumor no chance of swelling ! And
that we don't have to treat it !! Thanks so much for all the love, support
and prayers !! They mean so much !!

Reni (Jennifer's mom)

bcjjhh

08-14-2003, 02:41 AM

Joey C. - October/99 Kid

Hello All,

Sorry haven.t written sooner been a busy summer.Dont have alot
new.Jamie Sr had his surgery on his back.... he is doing better.A little sore
but he is feeling no pain.I took the two weeks off work to take care of
the boys.Jamie has alot of things he can't do but... men dont listen to
doctors. LOL.

Joey is doing good.He can't wait to forth grade.He will have the same
teacher as Kyle did last year which is great for Joey since he already
knows that teacher.The other boys are doing good too.

As for me... I started another job just to keep up on the pile of
bills.It has been hard on us the past two years that Jamie has been home but
we are managing now.I also figured I would give the boys another try at
a pet.So we bought the boys fish... not much hard work for them to
do.so far we only have four but plan on getting more eventually.

Well I'll let you all go.Will write more when I can.

God Bless,

Melissa (Joey's mom)

bcjjhh

08-14-2003, 02:41 AM

Tiffany L. - December/01 Kid

Tiffany is in the hospital again for pain management. She has now been
in there 5 weeks out of six weeks. Everyday it is a little harder for
her. She fights us and the doctors about taking the pain medication. She
hates the way they make her feel. She does end up taking them but only
after hours of the pain. We are hoping to bring her home tomorrow if
she has a good night. I will keep you posted. Thank you for your prayers
and encouragement.
God bless,

Annamarie (Tiffany's mom)

bcjjhh

08-14-2003, 02:42 AM

Brianna B. - April/01 Kid

Hello,

Brianna had her MRI & MR Spectroscopy done. I got the report back but
am still waiting for a translation for it. Her blood work done was all
normal. So to explain the seizures she was having is not possible for
low levels. Cause they was not. I am also still waiting for her EEG
report. Although at least from what I seen during the EEG she never had any
seizures. Wouldnt you figure you run test to see what is going on and
they stop. She went from having one a day up until they done the MRI
and had to put her to sleep for it. She has not had any since. As soon
as I get any result I will let you know.

Our county fair starts next week. We are looking forward to going there
we have a booth every year for Brianna to kind of help educate people
on her disease and help raise some money for her medical bills. So we
will be there from open to close every day.

I think that is all for now. Thank you all for your continued thoughts
and prayers for Brianna and my family. They are all truly appreciated.

Yulinda (Brianna's mom)

bcjjhh

08-14-2003, 02:42 AM

John C. - February/03 Kid

Hello everyone John has been having a very good month. he is on full
chemo and goes for his clinic appointment for vincristine on the 15 th
of Aug. On Aug 26th he will begin 3rd grade!!! He was tutored for the
whole 2nd grade and missed the last month of 1st grade when he was
diagnosed- so it will be great to see him back in school all day and getting
things back to normal.

John's hair is all growmn back in- i can't wait to send in an up dated
school pic- it is red and thick and wavy- I find it hard to believe
that 4 months ago he was bald! thank you all for your cards, prayers and
kindness. God Bless you all!

Lorraine (John's mom)

bcjjhh

08-14-2003, 02:42 AM

Tyler B. - June/00 Kid

Hi everyone,
First I would like to thank the volunteers that remind me to send an
update.
Secondly I would like to thank the people that sent birthday cards to
Tyler. He loved reading the cards and seeing where they were from!
Ty is doing really well and we just returned froma couple of days up
North. Tomorrow we will possibly head back out to go camping. The summer
has passed way too quickly and too soon Ty will start sixth grade!
Thanks again to everyone.

Heather (Tyler's mom)

bcjjhh

08-14-2003, 03:11 AM

Chase C. - April/02 Kid

Hi Everyone,
Thank you to those who still send cards and say
PRAYERS!
Chase had an MRI this week and it came back CLEAR!!
Praise God!!! His body is recovering nicely from the
damage the chemo caused. He started school last week
only going half a day until his strength builds up. I
took his NG tube out last week per doctor's orders and
his weight is stable. He and I will go bear hunting
next month so please pray for a safe and good trip.
Words can not express how much your support has helped
us through the hardest time of our lives. It's a great
feeling to know that there are so many good people in
the world.
Due to unforeseen and very unfortunate circumstances,
Ciera, my stepdaughter who is like my own, is staying
with her grandparents right now. We miss her very much
and hope she will be able to come home soon.
God bless,

DeAnna (Chase's mom)

bcjjhh

08-14-2003, 03:11 AM

Elizabeth I. - August/99 Kid

elizabeth is doing great she start 1st next monday
she can't wait

she is having a promblem get her weight up so they started her on some
calaroie adding stuff they hope it works

tina is at home and doing fair and says thanks for all the cards they
loved them all

Tina (Elizabeth's mom)

bcjjhh

08-17-2003, 04:08 AM

Zakki S. - November/02 Kid

Sometime around the middle of July Zakki contracted coxsackie virus.
What we thought was to be a short virus spun out of control. A week
after he got it, I got it and Hanz got it. Not only did we get the
blisters in our mouths but we also all got thrush (Zakki much worse than his
everyday thrush). We are finally coming out from under this one. Our
pediatrician got myocarditis from it several years ago and when I took
Zakki into see him, he also had coxsackie again. Apparently there are
30 different kinds of Coxsackie (from what
I've been told by 2 doctors and what I've read). So having one kind
doesn't mean you won't get the 29 others! After wondering why we would
all get thrush at the same time, and doing more research and not finding
many answers - today I spoke to one of my favorite lmonologists at
CHOP. He told me that coxsackie is an immune modulating virus - meaning it
suppresses your immune system and lowers your white blood cell count.
And it sheds in your body for 8 weeks (in Zakki longer b/c he's on
prednisone) BUT you are contagious the week before you have symptoms. He
thought Zakki probably got it at the pool. So much
for thinking it was a 5 day virus. When I asked him why we would have
gotten it, he laughed and said as a doctor he has had it himself more
than once and he hates the virus more than the flu. And he also told me
something interesting - something my pediatrician had told me recently.
As parents of a special medical needs child we are all technically
immunosuppressed from the stress we endure for years and years. Apparently
there was a study done on CF parents and it was found that the parents'
T cell counts, NK (natural killer) cells,
and lympocytes were found to be depressed. Also, and here is the scary
part, due to having immune systems that are suppressed from stress, we
are at a greater susceptibility for cancers. We don't stand a chance.
Hopefully love will sustain all of us!
I'm still fighting daily panic and anxiety attacks after what I went
through in June with one doctors impression of some medical tests I had
done. Although, I had several other opinions and they thought I was
fine I feel as if a hex has been put on me and I'm still terrified. The
nocebo effect (being told something is wrong and now trying my best to
NOT believe something will happen or is wrong) has been really hard to
overcome. Getting coxsackie virus didn't help because my mind wandered
imagining the worst. Any extra prayers to help me through all of this
would be much appreciated.
Hanz is doing much better after his 4th of July accident where he
almost perished in a waterfall accident. I don't know if I wrote and told
the group about it or not. He was trapped between two rocks and
consequently almost lost his leg and his head was under water. Military
personnel and a scout master rescued him. Just another crises we've
emotionally endured.
Drew is doing very well as he is 6 months out from his bypass surgery.
He is back to himself with sarcastic remarks every other second.
Zakki has started several new meds for his thrush. I guess being on
Nystatin for 9 years was too long to be effective anymore. Last night
his pulsox (which he sleeps with on) went off every single minute it
seemed through the night. Of course my mind wandered from seizure to
encephalitis (from the coxsackie) to fungal infection in the lungs. All
in all he is doing pretty good.
Does anyone know of any MD homeopaths in the Philadelphia area? I
would
like to sit down with one and discuss the more than 30 supplements I
have started taking and I would also like to somehow give Zakki a boost
with vitamins or supplements also.
We deducted expenses that we incurred during the fire, from rent and
the apartment building owner sued us for same. Unfortunately when we
went to court they won possession. Bad situation. We have appealed so we
can remain living here and we are working up our case for September.
In so doing we are having our apartment tested for mold, as we are on
the top floor and have leaks year round - quite bad and quite big ones.
When Zakki's lungs started hemorrhaging 5 years ago his doctors didn't
think it was from the mold but I am reading that chronic mold exposure
can also suppress the immune system and cause
respiratory problems. It is a pricey undertaking but we need to do
this.
The summer (proper) is almost gone and I feel we missed a lot of it
from
the undue stress from my own situation that needed to be straightened
out. I have taken my mind to other things in planning Zakki's half
birthday party (we always have half parties in September so they can be
outside - less germs). It is going to be a pirate party with treasure
hunt and all. Also, does anyone know the website to check whether herbs
and vitamins and supplements interfere with px meds?

Thank you

Stephanie (Zakki's mom)

bcjjhh

08-17-2003, 04:09 AM

Mace' T. - June/02 Kid

Hello all.
Mace' has been doing fine. She is back at school-her final year at
middle school and she was extremely excited about going. She will be
active in Girls Scouts and orcheastra concerts this year. She had her
first year at Camp Kemo the last week in July and had a great time. She
is celebrating her 13th birthday on Sat. Aug. 16th and thank you all for
the cards this past week. They highlighted her days after coming in
from school. We went to the beach for a week and it was fantastic. Mace
and her brother truly had a wonderful time. Mace will be in a teen
group at the cancer center starting this fall. They go on trips and have
meetings. They will be going to Edisto Island at the end of Sept. and
the cancer center is having a Family retreat the first weekend in Sept.
so we will be having lots of new experiences in the next month. Thanks
for everything - thoughts, prayers, cards, and wishful thinking for our
Mace'. MACS and others have honestly made going through this time
bearable. Thanks once again!

Tasha (Mace's mom)

bcjjhh

08-17-2003, 04:09 AM

Lindsay S. - October/01 Kid

Lindsay ended up not having the dental surgery in June as she got fever
blisters and they would not do it due to the increased risk of
infection, SO she is scheduled to have it done this coming Friday. She has had
MANY, MANY hospital and doctor visits since our last update. She had a
renal scan to check her kidneys and they are still considering doing a
kidney biopsy to find out why she is having the renal issues. They
think I was told that each "illness" she gets it will slowly progress the
kidney damage due to all the trauma to the kidneys. She started her on
another medication to try to help the kidneys I guess one more
medication added to the 16 she already takes is no big deal. She had a heart
biopsy and it showed some rejection the first of July so she was admitted
to the hospital and treated for that for two weeks. We also started her
on a diet similar to Atkins.IT is so frustrating they wanted her to
GAIN weight before the surgery and were sending her 3 meals and 3 snacks a
day and NOW they want her to loose weight..So it is difficult as the
DR. ordered the diet and said the dietitian would HELP us with it and she
is NO HELP at all but they expect you to follow it anyway..She does not
return calls or emails. The DRS. on the other hand are NOT supportive
at all...I told them they should show more encouragement instead of
EVERY DAY saying well OK you lost BUT you need to do more..We measure her
food and drink and have to test her urine twice a day. She had done VERY
WELL though ...She also started receiving physical therapy while in the
hospital. We have had twice weekly visits to the hospital since she was
discharged from the hospital. Our house was struck by lightning a week
ago and we lost a lot of electrical things so we have been staying with
relatives while repairs have been done at our home. We are hoping to be
back in it by Sunday as she will start school this Monday. She is
excited about going back to "real" school and seeing the rest of her
frineds..THANKS again for all the mail you send..Many of you have asked her to
write you back she is not much for righting letters but she will do a
small e-mail if you send the address

Lauren (Lindsay's mom)

bcjjhh

08-17-2003, 04:10 AM

Hannah P. - March/02 Kid

Hello All...Just wanted to let everone know that Hannah is doing
well. Her last sinus surgery went well and it seemed to work for
a while but the sinuses seem to be acting up again, but all in all
things are well. Even though her retinoblastoma was a year and a
half ago she still sees Doctors quite often but she is used to
it :)
Hannah is very excited about starting Pre-Kindergarten in a few
weeks.She loves school :)
Thank all of you for continuing to write and send Hannah cards(and
her sisters & brother too) they all love it. What a wonderful group
this is. Again "Thanks"
Blessings,

Jennifer (Hannah's mom)

bcjjhh

08-19-2003, 04:09 AM

Chad C. - June/03 Kid

Chad continues to do well. He and his brother just got back from camp
UKANDU. This cancer camp is staffed 24/7 with doc's and nurses and the
kids have nothing but fun for a week. Hope this fines you and yours
well. Hugs,

Jeannie (Chad's mom)

bcjjhh

08-19-2003, 04:09 AM

Katia S. - March/03 Kid

Katia is doing very well. She is full of energy and happy to have
sunshine out in Florida right now. Her next Bone Marrow Aspiration is in
mid-September so please keep her in your prayers that there will be no
signs of Leukemia. She has this done every 3 months. They check both her
spinal fluid and her Bone Marrow which means she has a needle put in
her spine and her hip bone. All of this is done without any medication to
ease the pain because Katia no longer has a broviac.

Therefore there would have to be an IV put in her hand or arm to give
her the medications to put her to sleep. With Katia having the temper of
the Hulk (and his strength) that becomes impossible to do. She has a
hard time getting this done but is usually back to normal and talking to
people within 10 minutes after having it done. I hate to see Katia go
through all of this but this is the only way we can be reassured that
she is clear from Leukemia and staying in remission. Thank you for your
prayers.

Love,

Tracy (Katia's mom)

bcjjhh

08-19-2003, 04:10 AM

Sully B. - May/03 Kid

Hello to all and thank you to those who have sent cards since Sully B's
last update.

On the medical end, Sully has continued getting his monthly blood
tests, with a few additional ones tossed in between regular appointments
because his protime (clotting level) had been running a bit high. A slight
adjustment in his medication (coumadin), which he takes due to his
having a prothstetic mitral valve, saw a positive leveling off of his
readings.

Sully continues his monthly phone checks to see how proficiently his
pacemaker is doing, but recently visited the heart clinic (Penn State's
Milton S. Hershey Medical Center) in person for an annual check-up.
Testing revealed that his battery power is definitely running down (Sully
is 100% pacer-dependent, which means his every heart beat is generated
by the pacemaker, as opposed to some heart patients whose hearts only
require their pacer to fire when they are at rest or when their heart
otherwise drops below a safe rate).

Dr. Consavage stated that Sully should return in six months for a
re-check (unless phone checks reveal a sudden increased loss of power)
because there is only eleven months left till his battery runs out. Since
Sully is 100% pacer dependent, however, the figures could change
depending on how active or inactive he is over the coming season. Naturally,
his father and I want to postpone surgery as long as possible, since
we've yet to have a "good" experience (is there such a thing?) surrounding
one of Sully's surgeries.

This is Sully's 6th pacer, but the one he's had the longest -- since
Thanksgiving 1996 just before Sully turned six. The doctors then said
that it should last approximately seven years, and come this November it
will have been indeed seven years since the last time we nearly lost
Sully. So, putting off surgery is good, but perhaps not too long -- don't
want to risk the battery losing power in this little pacemaker patient.

On the social scene, Sully had his first at-camp experience at a
wonderful Heart Camp I found on the Internet. It is called Madden Open Hearts
Camp and is the legacy of one of the earliest heart patients, who
willed his 400 acre estate in Massechusettes to be turned into a camp for
kids who can't attend other camps due to their heart conditions. The
staff was phenomenal and quickly put this nervous mom at ease. Hey, Sully's
been away for months before, but it was always in a hospital! This was
his first two weeks completely away from family. Louise and Amanda who
run the camp are lovely people (as well as the rest of the staff) and I
was especially put at ease by Donna, the Cardiac nurse, since she is
also the mother of four and also the mother of her own twelve-year-old
heart patient who attended camp earlier in the summer. How about that?

Everyone said Sully did great and was a model camper. He took a
challenging ropes course, camped out for his first time, hiked, canoed,
visited the Norman Rockwell Museum in Stockbridge and saw Much Ado About
Nothing (and loved it) by Shakespeare and Company. He played baseball,
sang karioke, swam, did arts and crafts and a whole lot more. It was a
challenge being away and he did get homesick, but I think he is proud of
his accomplishments (even though he is uncertain about whether or not he
is up for another go next summer).

Since most of the rest of the family stayed a few miles away in
Monterey for the two weeks Sully was at camp, it proved to be an adventure for
the whole family. Even Travis, who didn't flock north with the rest of
us, enjoyed his own Washington D.C. adventure by staying with an aunt
in that region.

Now as summer winds down and school looms (actually, as homeschoolers,
we've been clocking hours in math, literature, and phys-ed since July
1st), our minds must turn to other matters. Sully will resume his piano
lessons soon. This will be his fourth year. He continues to love
listening to movie soundtracks and old comedy recordings from early radio
such as Abbott and Costello, Jack Benny, Bob Hope, Gracie Allen & George
Burns, and others (Sully loves to laugh).

From our family to yours, may the best of what summer has left to offer
be yours, and may you look forward to a fulfilling autumn as the
weather turns cool and the leaves turn crisp (well, where we live, anyway!).
Blessing to all for you caring hearts. Your thoughts and prayers for
all the MACS children are heard and felt.

garrie (Sully's mom)

bcjjhh

08-19-2003, 04:14 AM

Joshua A. - June/03 Kid

Joshua is in his 51st week of treatment and doing great with his chemo,
his counts have been good. His left foot has healed so the brace has
come off and he is walking again. Josh loves all the mail from Make A
Child Smile.

Karen (Joshua's mom)

bcjjhh

08-19-2003, 04:14 AM

E'trece J. - March/01 Kid

E'trece is having a more difficult time now. She spent a couple days
in
the hospital while we were on vacation at church camp. She is much
more dependent on her wheelchair and seems kind of out of it most of
the
time. It is hard to tell if the disease is just progressing or if she
is just drugged up from her medication. We are all coping well. We
enjoy every smile and laugh that she has to offer.

Although she had a rough summer, she is looking forward to starting
back
to school. Sitting at home is getting quite boring for her. As
always,
she maintains her strong spirit and fight to live.

Thanks again for all the cards and prayers.

Sherry (E'trece's mom)

bcjjhh

08-21-2003, 03:12 AM

Branen G. - September/01 Kid

I just wanted to send a quick note to say thank you to everyone that
has sent birthday cards, stickers and gifts for Branen on his "5th"
birthday. Everyday he looks forward to going to the mailbox to see what is
next. Thank you everyone again for all of your love and prayers.

Erin (Branen's mom)

bcjjhh

08-21-2003, 03:12 AM

Caleb L. - August/02 Kid

Caleb's vincristine was held this month due to toxicity. Oral chemos
were increased. He's having a difficult time adjusting to first grade. He
is having behavioral problems and low self-esteem due to anger from the
cancer, Dad losing his job, our family pet being sick, and trying to
cope with school. Pray for him.

Debbie (Caleb's mom)

bcjjhh

08-21-2003, 03:12 AM

Christina M. - October/02 Kid

Good evening eveyone

Sorry for not sending an update lately, things have been a little busy
around here.

Okay, I since I am not too sure when I actually sent the last update, I
will start from last weeks happening.

First off, we are not going to use Hospice. They are not willing for
us
to use TPN/Lipids (this is Christiina's nutrients) also, if she were
to
stop breathing or her heart stopped here at home, and I was not here,
I
want to have CPR and 911 called, well that is not agreeable with
hospice either. So, we are just using home health nurses, and that
works great for us.

On Thursday Christina received her monthly IVIG, and that was done at
St
John's. She did okay with it. I was glad that she was able to be on
7-west.
Even though she really did not talk much this time around she loves
all of the nurses on that floor. And they are really great.

It makes things seems a lot easier for her and me, when we know that
the
nurses both, here and in SL love and care for her.

Christina is experiencing some pain now, through out her body, part of
it I think is from the vomiting, but others maybe, like in the lower
back her kidneys, not too sure though. Anyway Dr. Wheeler ordered
Morphine IV for her and I am able to give that at home. It really
helps.

Speaking of IVs, we have switched almost all of her meds to IV. This
has seemed to help her so much. It is a lot of work for me, but I am
willing to do it all. We started this last Friday and so far no
problems. One of her meds, we were getting ready to start when her
doctor from SL called and said not too, talk about timing. It is an
immunospression drug, and if we were to overdose her on it, she would
have seizures and it would be too dangerous to start at home. We did
up
her oral dose of the med, and will see what her blood levels are, and
talk about putting her in the hospital, here or in SL for get her
started with her blood levels being checked daily.

Last week, we went and had pictures done, Christina looked like
Cinderella. She has a tierra and a little brides dress on that she
picked out. I can't wait to get them back. When I do I will try to
get
the scanner up and going and email you all a picture. She looked
BEAUTIFUL.

Tonight she asked me why is she like the way she is, I questioned her
and she said, feeling like she is going to throw up and her belly
hurting and hard to breath, etc. I told her I did not know why, but
that we (I) will help her however I can. When she relaxes it seems to
help her out quite a bit.

Oh yeah, we also got a hospital bed for her, she loves it. Before
Friday she was sleeping in the living room with me on the couch and her on
the love seat. Now she sleeps pretty good in her room. And with the
new meds she is not vomiting as much while asleep.

Another change in her wt, she is retaining a lot of fluids and we have
started lasix orally, a couple of weeks ago, but now we are going to
start IV lasix tomorrow, and hopefully that will help. I know just
doubling the lasix today, and giving her two doses has help her output.

I guess that is about all right now. It is late and I need to get to
sleep, early morning are fun-----NOT----- ;-)

Thanks for stopping by.

Lori (Christina's mom)

bcjjhh

08-27-2003, 04:41 AM

William S. - July/02 Kid

Wm had a wonderful summer at camp: learning how to canoe, swimming, and
loving his counselors. We just had our regular MRI though, and while I
can't say what the results are (I don't know them yet), I can say that
we've been in a holding pattern for a week while our doctors mull over
old and new scans to see if they're seeing any changes or just
something they never saw before. So please keep Wm in your sincerest
prayers...thanks.

Maria (William's mom)

bcjjhh

08-27-2003, 04:41 AM

Olivia K. - February/02 Kid

Thanks everyone for always keeping up with Olivia. She has grown so
much. She started second grade this year and I have the privilege of
teaching her. Fortunately we are surviving the experience, the child does
not know how to settle down she is a ball of fire, I know I would
spend most of my time up at the school about her because she seems to have
her own idea's about anything and everything.

As far as her health, we seem to keep battling infections and
rejection.
It seems like we have a pattern, once we finish one antibiotic we have
to up her anti-rejection medicine to fight that...but we are far from
recent years of continual hospital stays. So for the most part, she is
happy, healthy and full of life. My friends say she "sucks every inch
of life out of each moment", I wish we all could live like that.

Thanks again for all you do. You will never understand the depth of
appreciation my heart has about how you have helped our family
emotionally survive through such an on-going crisis.

Sincerely

Barbara (Olivia's mom)

bcjjhh

08-27-2003, 04:41 AM

Katia S. - March/03 Kid

I am shaking life a leaf right now. I just got a call. Katia has
relapsed in her spinal fluid. She will be admitted at 8am tomorrow to all
children's, have her line put back in and started immediately on
treatment. The numbers are high. That is all I can say right now. My head is
just spinning and i haven't even told Katia. I just called Myron.

Know that your prayers, cards and well wishes get us through this. It
has before and it will again. This is a huge huge hit on our little
family and we really enjoy hearing from you. Please pray for my baby. She
needs a transplant and doesn't have a match

Love,

Tracy (Katia's mom)

bcjjhh

08-27-2003, 04:42 AM

Aschdon B. - June/03 Kid

I wanted to update everyone on how Aschdon is doing. He had surgery on
Friday August 15, where they removed about an inch of bone from each
leg. In this they were able to move his hips back in alignment and his
hips back in the sockets. This also made is so his contractors are a lot
less than they were.

Aschdon is doing great, up and playing and not even acting like he had
anything done. He has to wear a foam pillow between his legs for three
weeks and from there he will get an x-ray done to see how much longer
after than. Aschdon and his sisters are suppose to be starting school
next week. Aschdon will not be going for a good month or so, luckily he
is just in preschool.

In October we are going back to Salt Lake for the SMA study where it
looks like they might be putting Aschdon on some medicine that is suppose
to helps with strength gain. I am excited!!

Thatâ€™s it for now!!

Hugs

Kenya (Aschdon's mom)

bcjjhh

08-27-2003, 04:42 AM

Kristina H. - December/98 Kid

I hope this one gets thru, it seems I had multiple viruses and I
believe I got them all now :) Kristina started the 10th grade !! She is doing
ok..Headaches and fatigue her real only complaint, We still travel to
Dallas about once a month for her check ups. She is excited about school
starting. I worry about it wearing her out even more.More soon,thank
you to everyone who continues to email and send her cards and things. She
appreciates it greatly. So do I..

Love
Mary (Kristina's mom)

bcjjhh

08-27-2003, 04:42 AM

Tiffany L. - December/01 Kid

Tiffany is in the children's hospital again for pain. She is unable to
straighten out her right leg. Please pray for some relief from all her
pain. We are still weaning her off the methadone. We are hoping that
she will be able to start school next week on time with her class mates,
but we are not sure. She is in so much pain. Thank you for all your
prayers and thoughts.
Sincerely,

Annamarie (Tiffany's mom)

bcjjhh

08-27-2003, 04:43 AM

Brandon M. - April/99 Kid
Hello Everybody

Just wanted to drop a note and let everybody know that he is doing
great. He was a little ill on the 4th of July but he got better in a few
days. He started the 5th grade yesterday and he was pretty tired after
school. He has a new aid this year and her name is Kristy - she seems
really sweet and good. Hopefully this one will last longer then a year.

This weekend we are going to Chichgo for the weekend - there is a
museum
that Brandon wants to go to because they have monster trucks there and
The graydigger is there.

So we are leaving after school today and be home on Sunday - he is
going
to be tired on Monday but he loves going places.

Just wanted to let everyone know that he loves his cards and thanks for
all the gifts and letter, too. Thanks again

Lisa (Brandon's mom)

bcjjhh

08-29-2003, 04:10 AM

Tiffany L. - December/01 Kid

Tiffany is home from the hospital and doing well. She is able to walk a
little with no pain. We are just happy to have her home before school
starts next week. Thank you so much for all the cards of cheer for her.
We are still amazed at the amount of people out there that care for
Tiffany. You all are truly angels. Thank you!

Sincerely,
Annamarie (Tiffany's mom)

bcjjhh

08-29-2003, 04:11 AM

Caitlyn L. - April/03 Kid

Caitlyn has been doing well the last two months. She's continuing to be
tapered off the drug therapy in hopes that she holds her blood counts.
They are still low but the doctor thinks her body may go back to normal
blood counts on its own in the long run (but there still is no way to
know because there isn't much known about Aplastic Anemia). She still
needs at least 6 months more of her therapy. Her kidney function is
returning and she started school this week.

Her favorite class is gym even though she can't participate in a lot of
the sports because of her low platelet count. We are still in search of
a bone marrow donor because it is the only cure and she may eventually
need it. She was able to cheer for her father, her dentist (and staff),
and members of the Aplastic Anemia foundation in a 5k run for a cure
this month. It was a great day. The cards and letters have really help a
lot in Caitlyn's recovery. They have been her best medicine!

Amy (Caitlyn's mom)

bcjjhh

08-29-2003, 04:11 AM

Christi T. - January/03 Kid

Because the Phase One beta/glucan study at MSKCC in New York only
decreased Christi's cancer by 25% and because the FDA will only permit four
rounds because it is so experimental, Christi will next travel to
Philadelphia to CHOP (Childrens Hospital of Philadelphia). where she will
undergo a DOUBLE (like one wasn't enough?!) MIBG high dose treatment;
followed by a rescue of her own stem cells to hopefully save her life.
She will be only the second patient in the United States to ever try this
Phase One Experiment.

The process will take approximately six weeks and we will live at the
Ronald McDonald House during this time. Christi willl be injected with
the radioactive isotope and have to remain by herself behind lead
shields in her hospital room until the radiation levels go down enough that
it's safe for others to be near her. All clothing, blankets, toys,
etc. will need to be disposed of due to the extreme high radiation
exposure making them radioactive too. This will again be repeated a second
time - giving her a higher dose of radiation this way.

Because this clinical trial does not open until late October, Christi
is doing some low-dose chemo (Irinotecan) to hopefully hold her disease
steady until she can get into this MIBG treatment at CHOP. While
technically palliative care, we hope that the MIBG trial will destroy enough
of the remaining cancer to qualify her for another study of treatment
which may ultimately cure her. Because Christi just wanted to go to
school and because her beloved cat had a kitten, we've arranged for her to
have the chemo administered in our home in the evenings. This will
allow six year old Christi to start second grade on Tuesday and I will
return to my kindergarten position until we leave for Philadelphia in late
October. We pray that this chemo. will keep the disease at bay and buy
us the time we so desparately need to win this war.

After eight months of living in the Ronald McDonald House of NYC we are
FINALLY home!! Ahhhhh!!! You are angels on earth and have so richly
blessed all of us during Christi's fight for her life. God's greatest
blessings to you and yours!!!!

Angela (Christi's mom)

bcjjhh

09-01-2003, 06:09 AM

http://www.makeachildsmile.org/images/03kids/mary_lg.jpg
Name: Mary
Age: 5 years old
Date of Birth: March 9th, 1998
Main Diagnosis: Acute Lymphoblastic Leukemia

Mom: Hayley
Dad: Kevin

Mailing Address:
Mary K.
PMB #104
P.O. Box 1039
Canton, CT
06019 - U.S.A.

Abilities, Siblings & Interests

Thanks to Scott Eaton, owner of The UPS Store #2391 in Canton, CT for providing a Box to Mary free of charge

Mary's Story
written by mom Hayley

Mary has always loved to hear about the day she was born. It always makes her laugh to hear how she was just as head strong and independent moments after her birth as she is today. The birth was relatively easy with no complications and Mary's first four years saw her completely happy and healthy, she was a very confident smiling loving child.

The fall of 2002 we saw this begin to slowly change. Initially; we had talked to her pediatrician about her constant mouth sores, which had gotten so bad she had stopped eating and talking, her doctor offered no help. The sores disappeared and that is when her fevers started.

Every afternoon within one hour after she arrived home from pre-school, Mary would have a fever of 103º, again her doctor was not much help, the thought was perhaps Mary had urinary tract infections, so she was constantly getting antibiotics, but the fevers persisted. Then Mary started to have leg pain and stiffness, her doctor thought maybe she had arthritis, but after doing blood work and then x-rays they thought she had 5 femur fractures.

Well, after a long procession of more doctors and more testing we did finally find out what was wrong. Friday December 13th, 2002, Mary was diagnosed with Acute Lymphoblastic Leukemia. She was admitted immediately and on the following Monday, she underwent surgery to have a port implanted in her chest, and chemo began.

Mary has spent a lot of time inpatient due to the fact that she still runs fevers easily and that means she has to stay for antibiotics.

Mary is a headstrong and independent girl, she has taken all of this in stride, she takes pills every day, deals with painful procedures with so much strength and dignity that it brings tears to my eyes to watch her being so brave.

Mary tells us and others that she meets that when she grows up she wants to be an oncologist and that she will "figure out" the reason and " fix it" so that boys with Acute Lymphoblastic Leukemia have the same cure rate as the girls. Mary does not dwell on the illness and the impact on her life now, she's too busy looking forward.

Mary has been on hold from chemo for several weeks now as her counts had gotten extremely low, the hope had been that if we stopped the chemo for a week or so, her counts would recover. We found out in August 2003, that her counts are actually worse. We had all assumed that they would have made the turn around and Mary would have moved on to delayed intensification by now.

Mary has been scheduled to go to the O.R, to check to see if she has relapsed, or as we like to say "rule out a relapse". Then she will move on to the intense stage of treatment. Mary is feeling a little upset right now that the harder stage of treatment is coinciding with school's first days etc, and in this stage of treatment Mary normally spends several weeks inpatient so she is worried that she will miss out on all the "fun school stuff".

The next two months ahead are starting to look like a rough road but we are hoping that Mary will enjoy Fall time, which is her favorite time of year, apple picking, canning, leaf jumping etc. As you look outside on a sunny yet brisk fall day, think of Mary laughing and playing in the leaves and warming up with hot apple cider..... and smile.

Abilities:

See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: Yes.
Use hands: Yes.

Siblings:
twin sisters Tara & Mackenzie, age 4
brother Samuel, age 1½

Child's Interests:
Mary loves Barbie, music, Build-A-Bear, dress up clothes, etc...

Sibling's Interests:
Tara likes Barbie, The Wiggles and music.

Mackenzie likes The Wiggles, toy animals and musical instruments.

Samuel likes trucks, cars and Thomas the Tank Engine.

bcjjhh

09-01-2003, 06:10 AM

http://www.makeachildsmile.org/images/03kids/christina_lg.jpg

Name: Christina
Age: 10 years old
Date of Birth: August 2nd, 1993
Main Diagnosis: Acute Myelogenous Leukemia

Mom: Sherry
Dad: Michael

Mailing Address:
Christina G.
P.O. Box 7773
Lakeland, FL
33807-7773 - U.S.A.

Abilities, Siblings & Interests

Christina's Story
written by mom Sherry

Christina was your typical healthy baby girl. She led a pretty normal childhood up until she got sick. She did everything that a child should be able to do.

The initial battle started May 2nd when she went to the emergency room for leg pain. They did blood work that night and we were told about 4 a.m. Christina had Leukemia and that she needed to go to All Children's Hospital in St. Petersburg, FL.

The next day she had a bone marrow aspiration done and there were no signs of Leukemic cells in her marrow. So the doctors and us were stumped. Her red blood cells were very low, her platelets were very low but her white cells were normal. The leg pain continued so they did a bone scan and a MRI. It turned out that the head of her femur was dead. For some reason there was lack of circulation in the femur.

Christina had a bone biopsy done by a doctor from Moffit Cancer Center. They weren't sure if we were dealing with bone cancer or not, it turned out not to be bone cancer. The doctor weren't sure what was causing this, so for 2 months we went to the Tampa clinic every Monday, Wednesday and Friday for blood work. She kept needing blood and platelet transfusions. She had 3 more bone marrow aspirations done in this 2 month period and it continued to show no leukemia.

Then one day, one of the aspirations showed something going on. We then went to the St. Petersburg Clinic on July 9th for another aspiration and it showed there were leukemic cells present. So basically we watched the Leukemia evolve. When she was diagnosed she had only 23% blast, we were told that a bone marrow transplant was the only way to go.

Christina was diagnosed with (MDS) Myelodysplastic Syndrome which evolved into (AML) Acute Myeloid Leukemia on July 9th, 2002 at the age of 8.

She had a Broviac (central line in chest) put in on the 10th and the next day started her induction round of chemo. She went into remission after the first round, we then continued with the next 3 rounds but, then we found a study that had 16 AML patients just like Christina and 10 of them did a stronger Chemo regimen instead of transplant and those kids are still with us today. We had to make a big decision, transplant or chemo. We decided to go with chemo, our thinking is if we go with chemo and then she relapses, then we can do transplant.

As parents that was one of the hardest decisions to make. Because of the change to do chemo, Christina's road map (course of chemo) changed. The next 2 rounds of chemo will be what those kids in the study received , we were told it would be tough because it was another induction round. And her body had already been through 3 other rounds.

Well, it definitely was tough, Christina went in the hospital to start this round on Nov 6th, 2002 and Christina didn't come home until Dec 28th, 2002 (53 days)!! In that long stay she was in ICU for a week. Her body went into septic shock, her blood pressure dropped dramatically her body was wanting to shut down, Because she was so septic she ended up with ecoli. She didn't eat or walk for 5 weeks.

Christina is so amazing, I say it all the time in the updates, I am just blown away by her strength and through it all she has this beautiful smile that just melts your heart. Christina stayed cancer free until July 30th, 2003 and the Leukemia is coming back. We are preparing her for a bone marrow transplant, this will be a very hard and long battle, but Christina is very determined to win this battle and NOT let the cancer beat her.

Abilities:

See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: Yes.
Use hands: Yes.

Siblings:
sister Ashley, age 11

Child's Interests:
Christina likes sports, fishing, crafts and animals.

Sibling's Interests:
Ashley likes animals (mainly dogs), cartoons and sports (Basketball the most).

bcjjhh

09-01-2003, 06:14 AM

http://www.makeachildsmile.org/images/03kids/celeste_lg.jpg
Name: Celeste
Age: 4 years old
Date of Birth: May 17th, 1999
Main Diagnosis: Diffuse Intrinsic Pontine Glioma
Other Diagnosis: Hydrocephalus

Mom: Tamara
Dad: Jeremy

Mailing Address:
Celeste Y.
P.O. Box 24594
Pittsburgh, PA
15234-0594 - U.S.A.

Abilities, Siblings & Interests

Celeste's Story
written by mom Tamara

The most joyous moment of my life was the moment when Celeste was born. Celeste was my first baby and the feeling of joy that I experienced when she was born was so incredible that it is impossible to describe. I knew from the beginning that Celeste was very, very special and has always been remarkably kind and loving. When she was only 2, she would give flowers to other children at the park. She has always been unbelievably sweet. Celeste and I are extremely close. I am with her each moment of every day. We're inseparable.

Celeste was beginning to show some behavioral changes in January 2002. She had intense fits about getting into her car seat occasionally. It wasn't like her to act this way and we knew that it was strange for such an otherwise agreeable and extremely lovable toddler like Celeste. She would often wake up at night screaming. We were told that this was night terror and normal toddler temper tantrums. We started to put her in bed with us and cuddled with her. We assumed that the occasional tantrums were normal even though they were extreme and out-of-character for our baby.

Our family made a move to Pennsylvania in March 2002. Celeste started to wake up in the middle of the night more frequently in October 2002. Her behavior was erratic when she would wake up but it was dismissed as 'normal' toddler behavior. She was also dealing with the hospitalization and sickness of a very close loved one (my grandfather) so it was partially attributed to stress.

Celeste was always very close to my grandparents. My grandfather passed away in November 2002. She still talks of him every day and misses him terribly. She makes little 'packages' for the angels to take to him in Heaven. Her packages contain little candies, drawings, and findings that she thinks that he would enjoy. She took his death much harder than we thought she would.

Celeste was diagnosed with a diffuse Pontine Glioma in February 2003. This is a highly malignant brain stem tumor. Two days before she was diagnosed, she painted a picture with an angel in it. She frantically painted this and showed us the angel in the picture. The next day Celeste began to stumble and seemed dizzy. She had the symptoms of a fever with no fever. We called her doctor and were told to come in first thing in the morning. The next morning, Celeste couldn't walk or stand. She could barely keep her head up. She was able to talk with slurred speech and vomited. She kept telling me that she loved me.

We went to the emergency room and a CT scan was done. The doctor came in and told us that our baby had a brain tumor but that it looked operable. They did an MRI and told us that it was in fact inoperable and seemed to be in the pons of her brain, the part responsible for controlling bodily functions like breathing, swallowing, speech, and motor skills. It was an agonizing wait to speak with the pediatric oncologist, who sadly confirmed the diagnosis.

Celeste underwent shunt surgery at this time to help drain fluid that was accumulating due to the pressure from the tumor. She also had a central line placed for the administration of her medications. Our baby had stitches on her head and chest from these surgeries, was very listless, and was in pain.

We were taken to a little room outside of the pediatric intensive care unit and told that our baby would die in 6-12 months (with radiation), the tumor was inoperable, and that radiation therapy would give us a bit more time with her but that there was no cure for her tumor. We felt like the world was caving in on us and our dreams. I was 6 months pregnant and had a 1½ year old at home. We just closed on our first house, a 'fixer-upper' that we intended to pour our efforts into to make a wonderful home for our family.

Celeste was sent home in two days and I administered steroids to her through the IV three times a day to control swelling. She was only 3 at the time and had to have a central line because it was almost impossible to give her medicine and she had to be sedated every day (except for weekends) for her 6 weeks of radiation therapy.

She was unable to walk until about two weeks after radiation therapy had ended. During radiation, Celeste had body pains and severe constipation from the steroid. She vomited frequently and was very tired. It was hard to see her room stay clean. We spent a lot of time reading, listening to music, watching movies or taking short car rides when we weren't in the hospital for one thing or the other. It was bitter cold outside.

Celeste is getting around pretty well now. She occasionally loses her balance and this seems to be worsening. She tires easily and has gained a considerable amount of weight from the steroids. Remarkably, Celeste's spirit has remained strong. She's always telling jokes or laughing and doing arts and crafts. She is amazingly strong and doesn't give up when we know that it's so hard for her to do the simple things most people take for granted.

We were recently taken off a clinical trial and are currently looking for other treatment options, although we have been told that anything would be ineffective.

Abilities:

See: Yes.
Hear: Yes.
Talk: Yes, with some difficulty at times.
Walk: Yes but with increasing difficulty.
Read: Yes.
Use hands: Yes but left side is weak.

Siblings:
brother Grant, age 1½
sister Ella, 3 months old

Child's Interests:
Celeste loves flowers, cats, teddy bears and stars. She loves music and sings a lot. She is very fascinated with princesses, fairies, butterflies and especially angels. Her favorite colors are pink and purple. She likes Hello Kitty and Barbie. Celeste's favorite thing to play is dress-up. She also likes picnics, whether they are in the park or in our backyard. We also have them on our floor when the weather doesn't permit us to go outside. Celeste enjoys playing in the kitchen and helping mommy make desserts like chocolate chip cookies or cake. She is extremely artistic and absolutely loves any kid of craft activity. She is an avid sticker collector.

Sibling's Interests:
Grant loves cars, trucks and trains. He also loves animals very much.

Ella is an infant and is just beginning to smile. She loves her sister, especially when she sings to her.

bcjjhh

09-01-2003, 06:15 AM

Bryan D. - May/01 Kid

Bryan is doing well. He recently started 5th grade in yet ANOTHER
school. This is his 9th school! For some reason the school district
keeps moving the special ed students every year.

Anyway, he seems to be doing ok with the change.

Medically he is doing well. His last labs were good. Amazing since
it's been so hot this summer. Usually dehydration causes his labs to get
pretty bad, but so far so good.

Last night I took Bryan to an astronomy get-together. There were a lot
of people there and people talked about various constilations and had a
bunch of telescopes and we were able to see the moon (craters and
all!), various other galaxies and even mars! Bryan liked it, but you could
tell he was pretty tired. It wasn't dark enough to see much until
about 11pm.

Thanks so much for all the cards. Bryan loves to read them (he's
getting pretty good at it!).

Shelly (Bryan's mom)

bcjjhh

09-01-2003, 06:16 AM

September 1st, 2003
1:50am EST

Topic 1 - Inactive Kids
Topic 2 - Name change
Topic 3 - New Sponsors

------------------------------------------------------
Topic 1 - Inactive Kids

The kids below have been placed on Inactive Status.

Please make note:
Adam C. - January/02 Featured Kid
Cody James H. - February/03 Featured Kid
Karlee-Ann P. - October/01 Featured Kid

What is Inactive Status?
Please read more about it at
http://www.makeachildsmile.org/faqs.shtml#inactive

Below is a message from Adam's mom:

I'd like to start off by saying "thanks" to Alex and all the wonderful
people out there who have taken their time to send Adam hundreds of
cards. During the days he was unable to leave the house he loved seeing
his dad return from the post office with handfuls of cards to read. It
gave him something really good to look forward to on the days that life
seemed kind of dark, for that I will be forever thankful to you all.

Adam is doing really well now. He has 11 more treatments then we'll
hopefully be done with this Chemo thing forever.

That being said, I think it's time to move him to the "inactive" status
on MACS. It's been a wonderful experience for us all. Thanks so much.

Melanie (mom to Adam Jan/02 kid)

------------------------------------------------------
Topic 2 - Name change

I forgot to notify everyone last month that since we now have two
William S', they will be known on MACS as:

William Edward S. - August/03 Featured Kid
William James S. - July/02 Featured Kid

------------------------------------------------------
Topic 3 - New Sponsors

Please welcome our new MACS Sponsors:

Art Colleges
http://www.best-art-schools.com
Best-Art-Schools.com is a content-rich resource for aspiring artists
looking to make an informed educational choice to achieve their goals.

Area Rugs
http://www.only-area-rugs.com
Area rugs are the perfect way to finish off any room. With so many
choices available, you will enjoy shopping for the perfect rug for your
home. Shop for area rugs for your living room, dining room and also find
some fun designs for your child's room.

Cheap Holidays
http://www.holidays-over-the-net.co.uk
Cheap holidays, flights, hotels and car hire.

Long Distance Shop
http://long-distance-shop.com
The Discount Long Distance Shop offers calling plans from OPEX, Unitel,
TTI National, PowerNetGlobal, Capsule Communications, and other leading
discount companies, plus conference call services from Cognigen. We
provide SERIOUS discounts for both residential and business long distance
calls!

Rental Car Hire
http://www.carrentals.co.uk
Car hire from Car Rentals.co.uk, cheap rental car hire in UK, USA,
Spain, France, Italy and the rest of the world.

Tech Schools
http://www.best-technical-schools.com
Best-Technical-Schools.com has reviewed some of the top online and
campus schools to help get your career on the fast track to success.

College Finder
http://www.online-college-finder.com
Online College Finder helps students locate schools nearby in fields
such as Culinary, Medical, Designs and much more.

Shopping Cheap
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Directory of the top shopping deals on the Internet with direct links
to bargains from Home and Bath to Boating products.

Mortgage Quotes
http://www.imortgagecentral.com
iMortgage Central is an nationwide free mortgage quote service who
connects lenders and borrowers together. We provide you, the consumer a
connection with the mortgage lender.

Home Mortgages
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Providing a directory of offers for all types of mortgages and home
equity loans for the U.S. the U.K. and Canada. Compare interest rates and
terms by taking advantage of the many mortgage leads we offer.

Secured Loans UK
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UK personal loans site offering secured loans to the UK homeowner.

Buy to Let Mortgage
http://www.cheap-mortgage-tips.co.uk
Buy to Let mortgage specialist providing tips and links for obtaining
cheap mortgages.

Online Credit Cards
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Providing applications to the best credit card offers for all
individuals in the U.S. and U.K. Whether you are a student, businessperson,
traveller, or regular consumer, you will find a card that will cater to
your needs.

Debt Consolidation
http://www.debtconsolidationconnection.com
Credit counseling and debt consolidation can help lower monthly debt
payments and prevent bankruptcy.

Unsecured Loans UK
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Unsecured personal loans for UK homeowners and tenants.

Best Online Casinos
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Online Casino Review offers comprehensive information and comparisons
of a large number of online casinos and sportbooks. Also offers detailed
advice on gambling strategies for several casino games such as
blackjack, roulette baccarat and poker.

Disclaimer: We cannot warrant or sustain any information contained on
any website linked to or from MACS, including those of our Sponsors.

Alexandra Davila
Founder & President
Make A Child Smile Organization
http://www.makeachildsmile.org

bcjjhh

09-01-2003, 06:17 AM

**Reminders**

--September Birthdays--
01st (2000) Sophia D. - July/03 Featured Kid
04th (1991) Sarah B. - May/03 Featured Kid
04th (2000) Chloe A. - January/03 Featured Kid
06th (1997) Cameron S. - December/02 Featured Kid
15th (1998) Hannah P. - March/02 Featured Kid
17th (1998) Kristen M. - March/03 Featured Kid
21st (1995) Joshua C. - October/02 Featured Kid
22nd (1994) Brianna B. - April/01 Featured Kid

--September Angel Anniversaries--
07th Morgan L. - May/00 Featured Kid - 3rd Anniversary
15th Tyler J. - July/00 Featured Kid - 3rd Anniversary
21st Anthony Ruben H. - July/01 Featured Kid - 2nd Anniversary
28th Chase L. - September/98 Featured Kid - 5th Anniversary

Please visit our site and mail a card and/or gift to our featured
children today!

Please remember our Birthdays and Angel Anniversaries too!!

bcjjhh

09-01-2003, 06:17 AM

John C. - February/03 Kid

Hello everyone! John has been a very happy little boy this past week.
He started 3rd grade on Tue Aug 26th, and he came home singing. I have
my little boy back! On Friday he went for blood counts and he was put
back on 100% dose of his chemo. That is a big Blessing- as I worry when
he is on reduced chemo. On his next clinic visit- on sept 12th, John is
due for his quarterly spinal tap, so please keep him in your
prayers!Thank you to all the wonderful people who have sent him cards and to
those who sent a personal gift- and very special gifts- one is a painting
and another a CD! take care and God Bless you all !

Lorraine (John's mom)

bcjjhh

09-05-2003, 04:39 AM

Chad C. - June/03 Kid

Thank you to all that have acknowledged Chad with cards. He is doing
well these days, and today is his first day in Middle School! He was so
happy this a.m. to go, we pray this continues throughout the year.

Jeannie (Chad's mom)

bcjjhh

09-05-2003, 04:40 AM

Sarah B. - May/03 Kid

Sarah had an exceptional summer and continues to do well across the
board. She will celebrate her twelth birthday and begin her fifth grade
school year on September 4th.

Debra (Sarah's mom)

bcjjhh

09-05-2003, 04:42 AM

Katia S. - March/03 Kid

Katia relapsed on August 26th and was admitted back into the hospital
to have her broviac put back in and started treatment August 27th. She
is having a hard time with the chemo causing her to throw up and not
want to eat. She will need a transplant and up till now, does not have a
match.

Katia still loves to get mail and now that we are back in the hospital
needs smiles. Thank you for all of you that have kept up with her even
when she was home and doing well for the summer. She needs a lot of
prayers now as the leukemia came back very quickly and aggresively.

Love,

Tracy (Katia's mom)

bcjjhh

09-05-2003, 04:43 AM

Christina G. - September/03 Kid

Hello,

I just wanted to update on Christina featured this month Sept..

Christina is now in the Hospital getting ready to receive a bone marrow
transplant. She has had a pretty rough time with the total body
radiation and the chemo and the immune suppressant drugs, but she is a
fighter. She will be recieving the transplant (cord blood) on Sept 2nd. So
this will be a 2nd Birthday for her..

Thank You,

Sherry (Christina's mom)

bcjjhh

09-05-2003, 04:46 AM

Ronnie R. - February/02 Kid

We're done! Ronnie's oncologist called back 9/2 and I asked why the
paperwork at ambulatory last week showed he was done that day when we
still had 'til the end of Sept. and he said we're done.
He rechecked, and said even though treatment is 3 years 2 months, it
goes by the number of weeks, which he had completed as of last week.

His WBC was low and liver functions were abnormally high - but both
should slowly resolve over time.

No more chemo, I think I'm still in shock

I feel bad because with Dad scheduled to work in NJ as of Sept 20th we
really don't have time to even have a party for him because Dad isn't
off weekends and right now its bad timing to try to take off work.

I really think I am still in shock to be done. He still sees the
oncologist every 4-6 weeks to check bloodwork. He still takes Septra for
another 4-6 months, which is an anitbiotic to prevent pneumonia,
and he still has the port for another year unless it clogs & has to
come
out sooner. So on one hand to HIM its not really like he IS done since
so much stays the same, but part of me is relieved to finally have this
over with and the other part of me is terrified to finally have this
over with!

Christine (Ronnie's mom)

bcjjhh

09-05-2003, 04:48 AM

Kimberley G. - October/00 Kid

Hi all,

Well I guess I am really behind on this update. It seems as if time has
just flown by.
Kimmie has been having seizures again. She will go a day and not have
any than have 6 the next day. We are not really sure what is up with
her. She goes in for her routine check-up with Dr. Sandoval on Tuesday. I
guess we will see than what she wants to do. Kimmie is now out of
pampers and into the Attends youth diapers. : ( They cost so much for a box
of them. The insurance company does not think that incontinence is not
a health issue. She has been full of her self the last few weeks. She
has been in great moods most of the time. I had to baby-sit our
Godchildren the other day and the girls went along with me. They have a dog and
Kimmie has never liked dogs in the past. Well she freaked out over this
dog. She would laugh her little head off over this dog. She would laugh
so hard she would fall over laughing. She even let the dog give her
kisses. She would try and chase the dog around the room to pull on her. At
least now people donâ€™t have to pin their dog up anymore when Kimmie
comes over.
We had a family cook- out over the weekend. One of Tonyâ€™s brothers
and his wife came home for a visit. It was great to see them again. We
got to see the pictures from their wedding last year (Christmas time).
Claudia made such a pretty bride. Tony and Madison went down to the
wedding, Kimmie and I stayed at home. It would have been a long and hard
trip with her. The company that Tony and one of his brotherâ€™s works for
have a moon bounce that the employees can use. They brought it over for
the kids to use. They had such a great time in it. Uncle Pat even had
to take a turn in it. It kind of pulled at my heart to not have Kimmie
be able to get in and play with all her cousins. Sometimes itâ€™s so
hard to see the young niece and nephews do all the things that Kimmie
should be doing. Donâ€™t get me wrong I love the kids to death, but I just
wish Kimmie were able to play and walk and talk. I know it may be a sin
to feel that way but I canâ€™t help but wish my little girl could be
like the rest of the kids in the family.
It has been 9 years since all of Kimmie medical stuff has started. Nine
years ago this past week Kimmie had her first heart surgery. Tony and I
didnâ€™t seem to be to upset with the first heart surgery. I think it
was just a shock to hear that she needed heart surgery. We had gone to
in for tests to see why she wasnâ€™t gowning. We than found out she had
a heart problem and if it was not fixed right than she would not have
lived to be a year old. She was 8 months old at the time. Her heart was
3 times the size it should have been and was the size of an adult
heart. Itâ€™s hard to believe that she has had so many surgeries since than.
She did well with that surgery. Her life was changed forever by the one
5 months later. Some days I just want to pull my hair out thinking
about what that dr. did to her and never even said he was sorry. I will
never hear my girls say, â€œshe did itâ€ or mom she took my toy or
clothes.
Madison is doing well. She had to get a check-up for young marines. She
has put on a little more weight; she is up to 67 pounds. She does have
more blood in her urine again. I will have to call the urologist up and
see what he thinks. She passed her Corporal test. She will go up in
rank on Wed. evening. I am very proud of her. This is the hardest test to
pass in the Young Marines. She is also ready to go back to school. She
wonâ€™t know until the first day of school who she has as teachers. It
so hard to believe that she will be in 7th grade. It seems like she was
just born.
I have been getting things ready for my surgery. I had to buy a few
loose clothes to wear afterwards. Tonyâ€™s mom made me two small pillows
to use when I ride in the car. They are to go between my stomach and the
seatbelt. She did a great job on them. I have a few pre-op appt. the
week the kids start back to school. Itâ€™s nice to know that soon I will
be pain free. Yet it makes me sad to know that I will never be able to
have any more kids. We were not planning on having any more, but itâ€™s
the thought of knowing that I canâ€™t that get me down.
Tony is doing well. He had the guys over to draft their football teams.
I hope his team does well. The guys really seem to enjoy doing this
every year.
Well thatâ€™s about it for now. Sorry so long between updates.

Love to all,
Mary (Kimberley's mom)

bcjjhh

09-05-2003, 04:52 AM

Joshua P. - September/02 Kid

Hi to all,

Just a quick note to say that Josh is doing very well. He is eight
months out of treatment and remains in remission. He is enjoying first
grade and is playing soccer this Fall. He still gets tired fairly
easily, but is enjoying life.

Thanks so much for your words of encouragement, cards and letters. God
bless you all.

Beverly (Joshua's mom)

bcjjhh

09-09-2003, 03:51 AM

April W. - December/01 Kid

On Friday, Sept. 5, April had to undergo surgery to have her port-a-
cath replaced,..she went thru the surgery just fine, but is still in very
much pain. She has been taking Morphine and Tylenol 3 w/codeine for the
pain. She has been in the hospital for a little over a
week, and had her surgery, and her "tune-up" and hopefully will be
feeling better in a few days. Her old port had been in for going on 8
years, but I was informed that that was 4 years too long, and it should
have been removed long before now.

She has been going to school on a regular basis, and has found a new
"thing" that she likes to do in school,....she is a member
of the JROTC, and she has signed up for the Drill team. She tries so
very hard, to do the things all the others at school do,..and she loves
the challenge!!! She has been making good grades at school, but will
probably have to go back on homebound for a bit until she has recovered
completely from her surgery. The doctor also thinks that she may have
cracked a rib from the violent coughing spells that she has at times.

She is feeling ok, but your kind words and encouragement may be what
she really needs right now to help her on the road to a very swift
recovery!!

We thank all of you who have sent her cards and letters and gifts, and
we love you all!!!! Thanks again!!!!!

Love,

Jane (April's mom)

bcjjhh

09-09-2003, 03:54 AM

April W. - December/01 Kid

Well, good news!!! April had the xrays done and they show she does NOT
have a cracked rib! I talked with the doctor this morning, and she said
that the severe coughing didnt start until after the surgery, and that
is when April started complaining about hurting so badly. ( Poor little
sweetie was still sore from surgery also, so that didnt help matters
much!) The doctor also told me that April may come home as early as
tomorrow if her PFT's are good, and that is a nice thing to hear!! She has
been "sating" at 93% and above on room air so we are glad for that too!
The doctor said that it is to be expected that her sats were kind of
low, with her being post-op, and also on pain medication, but she IS
doing well, and is in VERY Good spirits, and anxious to come home!!!! Just
wanted to let everyone know what was going on and how she was doing!!!
Thanks again for everything!!!!!!
Love,

Jane (April's mom)

bcjjhh

09-09-2003, 03:56 AM

bcjjhh

09-09-2003, 03:58 AM

Jody G. - April/00 Kid

Hi everyone,

Time for a Jody update and he's doing quite well. He had a terrific
and fun-filled summer and is now enjoying his 3rd grade school year
immensely!

His school system decided to make some major changes to their Special
Education department. There were only 3 special needs children at
Jody's school, which is only 2 miles from us, sooooo they wanted to be
centralize and be able to offer better services to the children so they
decided to transfer all 3 kids up to their main campus 15 miles away. At
first we were very apprehensive about the move as he's been at his
school since 1999. But he 'fit right in' and has made new friends and is
really having a good year so far. He LOVES riding that school bus...he
thinks it's 'cool.' He is the first child picked up in the morning and
the last child dropped off in the afternoon since we live the farthest
south.

It seems we also have him paired with a terrific teacher and an aide
that are both working hard to make it a positive and learning school
year. His IEP is coming up...and I'm getting myself prepared to battle for
his goals for this school year. It's terrible to have to fight for
your special needs child's education.

Jody has finally begun to gain a little bit of weight...he's been way
under average percentile since his bone marrow transplant. He's stayed
between 43 and 47 pounds for the last year. But within the summer
months he's 'chunked' up to 56 pounds. It's not like he sat and ate all
summer either. He was very involved in a summer program at his school
and has gone swimming every day. He's also shot up to 4 foot 2 1/2
inches tall.

Again, we would like to thank everyone who still continues to remember
Jody with cards and gifts. An extra special thank you goes out to
Grandmom Gannon...Jody says to tell you he's decided to adopt you as his
grandmom for real :-)

Vicky (Jody's mom)

bcjjhh

09-09-2003, 04:01 AM

Katelynn M. - October/02 Kid

Well Howdy to all. We are now in another school year. Katie is now 2
weeks into her 3rd year in school. She started off thinking she was
not gonna like her teacher, but just loves her. Not all of her friends
are in her class, but she is making new ones.

Katie's health is doing really well. She has had no real problems to
speak of. Her counts keep coming back a little on the low side, but I
can deal with that as long as we don't have to change her meds, because
then we have to go back every week. It makes it hard for Kevin to get
caught up on vacation at work when we have to miss so much. We didn't
get to take a vacation this summer because of when Katie got sick early
in the year. So we are trying to catch up so we can go to Texas next
summer for 2 weeks. That's where the girls and I are from.

Well have a great week everyone and thanks for the contuined love,
support, prayers, and cards to Katie.

Love ya,
Donna (Katelynn's mom)

bcjjhh

09-09-2003, 04:02 AM

Zachary P. - April/00 Kid

I'm sorry if I haven't given an update recently. My computer has died
and I am using the public library's computer until I can get a new one.

Zachary is doing pretty well; however, his last MRI (a few weeks ago)
showed one small spot of tumor that had grown, so we are looking into a
change in treatment. He started school today (a middle school program)
and he loves school. We went to Canada (Niagara Falls) last month to
meet up with other families who have been affected with a brain tumor.
It was a lot of fun--met some new friends and shared a lot of memories.

Thank you to everyone who still sends Zachary a card and who prays for
him.

Robin (Zachary's mom)

bcjjhh

09-09-2003, 04:05 AM

Brianna B. - April/01 Kid

Hello,

It has been a busy summer but now that school is back in session.
Started yesterday. Things I am certain will get back on track around here.

Brianna just got back from a dental apt. He cleaned her teeth and
informed us that what ever I am doing keep it up for she still is cavity
free. I am so grateful for that news. It concerns me with her never
chewing anything at all. Her MRI showed everything to be like the last one a
year ago. Still no changes which is also good news. We are getting
ready for her Birthday party we are having it on Sunday the 21st. Her
Birthday is actually monday. I found the cutest care bear invitations to
send out. I just cant believe she is going to be 9 years old already.

Thank you to all who keep Brianna in your prayers for I know they have
helped in keeping her healthy and hospital free for well over a year
now.

Sincerly,

Yulinda (Brianna's mom)

bcjjhh

09-10-2003, 04:03 AM

Abby O. - January/01 Kid

Dear Friends and Family:

September 2nd was Abigail's first day of school! Other than being
homebound or hospital bound, Abigail hasn't been in a regular classroom
since Kindergarten (and that was only for 3 mos.). This was her first time
eating lunch in the cafeteria and many, many more firsts. I am so proud
of her because she was a real trooper and tried her hardest to meet
each challenge. And God bless her best friend Madison for being her moral
support and guide throughout the day.

The weekend before school started, I did all of my crying so by the day
school started, I was all â€œcried out.â€ I feel very lucky that I
have had so much time with my Abigail. It has been an honor to have her by
my side for so long. I can honestly say, I will miss having her nearby.
And now that she is stronger, it is time for her to go to school and
learn to be all that she can be. She is such a blessing to have around!

Please pray that Abigail's engraftment remain 100 per cent for both
cell lines and that she grows stronger and healthier. Her stamina is still
low but bless her heart, she struggles to keep up.

Love,

Suzanne (Abby's mom)

bcjjhh

09-10-2003, 04:04 AM

Tyler B. - June/00 Kid

Hi everyone,
School has started for all three of my boys. Tyler is in his
last year of the middle school, sixth grade. He doesn't like the homework,
typical boy. Joshua just started in the middle school, fourth grade and
Trace started pre school three days a week.
Tyler had a follow up appointment two weeks ago and he is doing so
good. Ijust wish that he would gain some weight.
Thank you all for continuing to send cards to the boys. They love to
get mail!

Heather (Tyler's mom)

bcjjhh

09-10-2003, 04:08 AM

Chase C. - April/02 Kid

Chase is doing well overall. He continues to go half a day at school
which is working out pretty good.
I have some unfortunate news. My husband and Ciera, my stepdaughter,
will no longer be with me and Chase. I do deeply appreciate all of your
kindness. Please keep us in your prayers. This is a difficult time. I
don't see how he could have done this especially now.

Thanks again,
DeAnna (Chase's mom)

bcjjhh

09-10-2003, 04:10 AM

Austin W. - September/02 Kid

Hi all.
Austin is doing well right now. He is going to school and is staying
on top of everything. We found out yesterday that we will be taking
him to Houston to be evaluated for a liver transplant on Tuesday, Sept.
16th. Please keep us in your prayers as we have never been to Houston
and have no idea where we are going there. Thanks for the happy mail,
he really enjoys receiving it.

Becky (Austin's mom)

bcjjhh

09-10-2003, 04:13 AM

Mace' T. - June/02 Kid

Hello all.
Mace' has been in school for a month now and she is enjoying it. Her
last CT scan was very uneasy. The results I mean. The xray tech found
a new spot on her lungs. The oncologist said not to worry because he
thinks it is just an infection from her being a little sick lately. I
am worried because that same spot has been on her last 2 CT scans and
the one that was there already... is still there. The doctor told us the
results with her in the room and she has been a little worried around
me, but she keeps asking me questions about the scan results and what
they mean. We are going to continue to pray and pray that the next scans
will be better. Mace' is also on her last schedule of treatment. She
will be finished on next Tuesday, Sept. 16th but I am uneasy about
this. The doctor said that they will watch her, but her treatment is over.
If there is anyone out there who has gone through a child with
Neuroblastoma, could you please email me and let me know your experience with
treatment and what happens after treatment. The doctors are making me
wonder alot of premature things and I don't know what to do or say to my
daughter. Please pray for my daughter and our family through this
ordeal. Thanks.

Tasha (Mace's mom)

bcjjhh

09-10-2003, 04:16 AM

Jimmy C. - July/03 Kid

Despite seizure activity over the summer, Jimmy is doing great. The
doctor prescribed an additional medication and the seizures have been
under control. He is in his second week of school and comes home
exhausted. He has an after school nurse that meets his bus. When Jimmy sees
the school bus, sees his after school nurse, and/or sees me bringing in
the mail, he has the same squeal of delight!

I am thanking everyone at MACS individually and still have a few thank
you cards to get in the mail. For those I have not gotten to, (and
those I have) thank you so much for your genorosity to my family. My
daughter has her cards on a bulletin board and keeps asking me to tell her
about "Miss Louis". I keep telling her, "It's Miss LOUISE!" :)

Cherri (Jimmy's mom)

bcjjhh

09-10-2003, 04:20 AM

Joshua M. - July/03 Kid

Josh was in the hospital a few days he had some very bad siezures,he is
ok now the doctor made his meds stronger,and told us to watch him
careful with his breathing and siezures!

God Bless,we love you all

Janet (Joshua's mom)

Gia

09-12-2003, 07:16 AM

Just bumping back up~
Thank you {{{{{bcjjhh}}}}} for always keeping us informed~:)

bcjjhh

09-16-2003, 03:49 AM

Joshua A. - June/03 Kid

Joshua continues to do well with his chemo. His next lp (Spinal Tap)
is October 13th. Please keep him in your prayers. Thank you to all who
have sent cards, Josh loves getting mail. God Bless you all

Karen (Joshua's mom)

bcjjhh

09-16-2003, 03:55 AM

Katia S. - March/03 Kid

September 13, 2003 10:25 AM

The night went well with no fevers:) Basically she has lost all her
hair now except for some stubble. She has been very loving this morning to
me which just warms my heart. We are still waiting for some more tests
to come back for the cord blood. They are worried there may not be
enough cells to use for Katia. The adult donor they have let that one go
because some of the numbers that came back show too much chance of
rejection.

There are preliminary numbers that come in first and then they do
further tests and further tests as the numbers come in. Of course they would
love to find a perfect match for Katia so they still continue to look.
The idea of having enough cells in the cord blood is that they would be
able to give her the transplant and hold onto a few extra bits in case
Katia doesn't seem to be grafting after 14 days to 30 days so they
could give her an added boost of cells again. I am confident that God will
provide the right match for Katia so in the meanwhile we just have to
prepare her for transplant and make sure we are getting rid of all the
leukemia cells in her marrow, blood, spinal fluid, brain and eyes.

I start each morning testing her vision and she always passes the tests
with flying colors:) She is in a very good mood right now. I look at
her and it just seems like yesterday her hair was all gone. It is amazing
how quick her hair grew long again. Hopefully that will be the same
thing again:) I know this update seems a little choppy but Katia is
talking to me so I keep stopping and chatting with her. She LOVES to talk:) I
LOVE to hear her talk:) Thank you for checking on Katia and keeping up
with her progress. Thank you for praying for me to have the strength to
deal with this. I can tell you those prayers are being answered:) I am
trying to keep the room completely sterile. I spend a lot of time
spraying lysol, wiping things down, and keeping hair cleaned up from her bed
and her clothes.

I have become very attached to my lint roller (perfect for picking up
hair) and I go through a lot of Lysol wipes and Clorox wipes. She is so
pretty:) I keep looking at her:) Well, I will go now so I can play with
her. I enjoy her good moods and laughing.Remember we are trying to get
postcards from all of the places you live and visit to decorate some
posters in the room. I know there are quite a few already on the way so
help us give Katia the WORLD:) If you have family or friends that live
abroad or in other states, let them know what we are trying to do. I
just think that would be a very beautiful project to work on.

Also, if anybody would like to send Katia a "Letter from Mickey Mouse"
or other Disney characters, please do. I think that would be cool and
she is young enough to really pull it off and make her think they are
right from Disney:)

September 13, 2003 9:05 PM

I have wanted to update so bad today but we have just been having so
much fun and I didn't want to stop! First, Jalen's Grammie (Terry) and
her friend Mary came to visit us and I was so happy to finally meet them
in person. I have quite a bond with them because we contacted eachother
while Jalen was in the hospital. They gave Katia Christmas in
September!!!! I mean, Katia was just so tickled and she really enjoyed their
visit. We all had fun:)

Then, soon after they left (thank you so much Terry and Mary for your
visit) Myron, Sharayah and Tatiana showed up! Myron and Katia got to
show eachother their collected hair in their ziplock bags (I will post
pictures soon after this update). Yes, Myron did most of his hair and will
continue to do it more and more. Katia was very tickled to see Daddy's
little bag. She lost quite a bit of what was left of her hair today so
now it is about 95one.

THEN, we had balloons delivered from someone that is an AML survivor
and that was just a great pick-me-up for all of us!(Thank you so much
Linda for sharing your story with our family). Katia had balloons
delivered yesterday from our dear friend Holley (thank you) and Myron has
brought her some. Needless to say, if we wanted to escape, we could fly
away. Okay, it just gets better. The kids were blowing bubbles with Katia
and she was just belly laughing and laughing and they were all singing
songs together and laughing. I was just in awe at watching the three of
them just be their normal happy selves all together:) That lit my
little heart up. I really needed that. That is better than any medicine!

Katia was feeling so great! Okay, do you think it could get better?
YES! They came in an unplugged Katia totally from her IV pole so she was
free for 3 hours! She said, "I am better now so we can go home." Okay
that really broke my heart to hear. We let her walk around in the room
and play with us and blow bubbles and go through her toys and just be
herself. At first she was shaky and unstable but then for about 45
minutes, she played! After a while she got shaky again and I picked her up and
just held her close with no IV lines to watch out for or a pole to drag
around. I just so much enjoyed today.

I took a bunch of pictures and Jalen's grandmother took a bunch when
she was here. We videotaped this evening of the kids playing and singing
and laughing and I think we all know what a treasure that video will be
to us over these next few weeks. Today was just a super high day!!!!
Thankyou so much for today Lord:)

I want to thank everyone for all your prayers and support because that
is what makes this type of happiness in this time so possible. Thank
you so much for just coming by and checking on us. Thank you so much for
doing what you can to cheer Katia and our family up. Thank you so much
for trying to help find a cure for cancer. THANK YOU!

Love, Tracy

Tracy (Katia's mom)

bcjjhh

09-16-2003, 03:56 AM

Sophia D. - July/03 Kid

I would like to take this opportunity the thank all of you fr your
kindness. The cards and stickers and packages were so greatly appreciated,
Sophia and her sister, Olivia, enjoyed every one. The MACS site has
inspired members of my family to do the same for other
featured children.

Sophia is doing very well. We have travelled back and forth from NYC
for Antibody treatment most of the summer. We are on a short break as
she has developed an immunity to the Antibody. We will know more in the
next few weeks when we will go back. She had scans in June and they
showed no evidence of disease and she is scheduled for her next set of
scans the end of September, pray there is no change.

Sophia celebrated her third birthday with many family and friends on
September first. She had the best day; Clowns, Elmo, food, a beautiful
cake and the best puppetier. She was Queen for the day.

We are making the arrangments for Sophia's "Make a Wish" trip to Disney
FL. I am hoping we can go over Halloween, I have heard it is great fun
for the kids. I am more than sure both Sophia and Olivia will enjoy
the trip.

Again thank you all for your kindness and I will update as soon as I
have the results of her next scans. God bless.

Diane (Sophia's mom)

bcjjhh

09-16-2003, 03:57 AM

Katia S. - March/03 Kid

September 11, 2003 4:45 PM

Katia is in a completely depressed mode today. Her hair is just falling
out all around her, even if she just sneezes or touches her hair. I had
to cut it shorter to her head because it was just dropping off into her
eyes and nose and mouth and causing her to scream and try to pull it
off. We also found out that we can't go on a "Dream Fund" trip to Give
the Kids the World at Disney because she won't have any breaks before
transplant. They have chemo, eye radiation, brain radiation, chemo and
then full body radiation scheduled all in next two weeks if all goes well
(whatever well means).

I am upset about not being able to take a break but I do understand. I
just worry what will happen after transplant? How sick will she be? How
much damage will all this radiation cause? I have to worry about her
survival and I just really wanted to see her totally happy and Disney is
just her favorite thing. She loves to meet the characters. At the Give
the Kids the World park, the characters come to you. You can eat
breakfast with Mickey or lunch with Pooh, whatever.

You can visit the park if you want and you go straight to the head of
the lines. The Give the Kids the World area has apartment type living,
your own little mailbox:), icecream parlors (free), food places (free),
arcades, all sorts of stuff and they just treat you like an absolute
queen. If the child is too weak to go to the park, they practically bring
the park to you. BUT, we will have to plan for after transplant. I am
getting quite nervous now and will probably faint when they finally set
a date. It is just alot of stress emotionally and mentally to think
about all that is ahead for Katia's little body in the next few weeks.
Please pray for ME for peace of mind, comfort in the fact that God is in
control, and courage to go through all of this with a positive attitude
that Katia really needs to see in me.

September 11, 2003 8:40 PM

Okay, one more update today to share some information about the
radiation treatments for Katia. From what the doctor is saying and planning,
Katia will get her chemo next week and when it ends, about a 2 to 3 day
break if she is doing well, then 2 weeks of brain and eye radiation
once each day (yes this has me very nervous) and then she will probably go
back on chemo to make sure she doesn't relapse before transplant and
then right before transplant (we still don't have a date or anything
concrete on that) she will get 3 days of full-body radiation two times a
day.

The main concern to them is for her site because the eye radiation can
cause cataracts and that would mean a lense transplant of the eye. My
main concern is all of this is going to just weaken her down to almost
nothing and then she will have to face transplant. I am very nervous
about all of this and the fact she will be having her regular problems
following the chemo and then have to face all of this radiation. We are
also told there are high possibilities of brain damage with the direct
radiation to the brain but they can't wait any longer to do it.

The good thing about radiation to her eyes is hopefully it will reduce
some swelling in her eye sockets which are causing pain and pressure. I
just look at her right now asleep and I am just so sad to know
everything she will be expected to endure. Please pray for her to have all the
strength she will need and then some more to face all of this.

September 13, 2003

Well I thought first as to whether I should start with the negative or
the positive but I believe in ending on a positive note. The only
negatives today is that Katia's hair is now so thin, you can see her scalp
BUT it is a pretty little scalp. I was reading in the guestbook and to
Sherry C., I will have to say that Katia has an "onion head" (that was
funny). I also am not being able to get Katia to eat anything but a bite
of marshmellows here and there but Daddy will be on his way this
afternoon.

He drives 45 minutes both ways each day, sometimes twice. He really
loves his little baby and he knows she waits all day to see him. Myron is
the light of Katia's eyes and he is the light of hers! Katia has been
the center of our little family since each of us first saw her. It is
amazing how loved she is!!! She is never one to upset anybody or be a
burden. She is always a delight and very playful and huggable and just so
kissable!!! (The doctors and nurses may not always agree)

Okay the positives. We had a good night sleep, although Katia spiked a
fever but she was very cooperative to take the tylenol from the nurse
so that was great. She is back on her antibiotics now and I pray this
doesn't postpone chemo, I don't think so.

KATIA ALSO HAD A POOPIE LAST NIGHT!!!! It had been a week and a day
since the last one so we are always happy to see that. This morning when
it was time to take the tylenol I asked for chewables and she LOVED
them. That makes it easier! I am now very confident with the decision to do
all the radiation before. I prayed and prayed last night and I woke up
this morning with an overwhelming amount of assurance in that decision.
Another positive thing is the guestbook!!! I am so touched by ALL the
messages and wish I could really take the time to respond to each and
every one of them. I want you to know I am so appreciative of those.

Katia had some balloons delivered today (thanks Holley) and she just
got all happy with those. She got her mail, which we haven't opened (she
is waiting for daddy) and she had 2 soldiers visit her today. They are
running for her in the Team In Training Marathon to raise money for the
Leukemia and Lymphoma Society. This morning has been a very good
morning and I pray the day is very good! I think it will be even with the
fever. Katia is smiling more.

I know we should really relish these times since she is about to go
through so much but I just feel that with all the support we are getting
from all of you (which keeps me and her feeling very positive) and with
Katia's strength (some people call it temper) that we are going to do
very well throughout everything. We are planning to shock everyone and
just do great!! Katia has so much love backing her up and I have all of
you to thank for that. Your love and support are a huge part of my
attitude and strength. THANK YOU!!!

Thank you so very much for visiting the site, signing the guestbook,
sending Katia little Love Packages, notes and letters to me, and just all
of your prayers. Thank you for passing Katia's name and site on to
those you know and thank you for your love, care and support. God bless
each of you abundantly:) Love,

Tracy (Katia's mom)

bcjjhh

09-16-2003, 03:59 AM

Aschdon B. - June/03 Kid

Aschdon leg surgery went well. He got a more major surgery than
expected as they cut an inch out of inch upper leg bone. This one procedure
fixed a few problems that we were not even aware of. His hips where
making his legs side swoop to the right, it was able to place his hips back
in the socket for a tighter fit (they were not out but one was partly)
and it also relaxed the contractures in his knees and hips.

It has been three weeks and he has been healing really well. Aschdon
now has a cold though and is very stuffy with stuff in lungs once in
awhile that we have to help him cough out. Hopefully he will fight it with
no major problems.

Hugs

Kenya (Aschdon's mom)

bcjjhh

09-16-2003, 04:01 AM

Annette C. - May/00 Kid

Hi everyone!
I am so sorry for the delay in the updates. Nettie is doing great. We
are still actively searching for a medication to help with her severe
case of lipodystrophy. Lipodystrophy is a syndrome that results from
the HIV medications that she HAS to take. It has caused her to gain a
huge amount of weight, the problem with that is that it is ALL in her
belly and back. She has lost all fat on her legs. In addition, she has
begun to demonstrate some lab issues as well. Her cholesteral is
shooting way up and her triglycerides are now about 300. She has been much
higher in the past, but we don't want her way up in the 700's again.
This puts her at great risk of heart disease, strokes, etc.
School is going very well and she is enjoying 6th grade. We will be
getting her a tutor so she can work on improving her reading level and
her math level.
Well, that's it for now!
Thank you so much for your prayers and wonderful mail. It is STILL HER
FAVORITE TIME OF THE WEEK (opening her mail)!!!
Take care and God Bless,

Renee (Annette's mom

bcjjhh

09-16-2003, 04:03 AM

Christina M. - October/02 Kid

Well, here we go again. Christina was admitted into the hospital here
at Children's last night. She had been here last week for some
scheduled appointments and we were scheduled to go home on Friday.
However she spiked a temp of 101.2 and we were told to stay in the St.
Louis area until at least Monday.

Yesterday while we were at the Mall, she started complaining of chest
pain and I gave her some Morphine and it had not helped with the pain
even after 30 minutes. I called the Pulmonologist Fellow on call and
he
told me to bring her in.

She was a direct admit to the floor. She has some major fluid over
load
and was started on 40 mgs of Lasix IV every 6 hours in hopes that it
would help. She was also placed on a By-Pap machine to help in her
breathing. Her CO2 level was in the 60s the normal in the 40s or
something. They have also started her on blood products, her
hemoglobin
was very low.

Christina seems to be tolerating the By Pap machine ok, although last
night I was not sure if it was going to go on or not. She was very
upset and was crying that none of this was fair. I wanted to cry with
her. But she settled down and did fine through the night. I think this
was the first night that she actually slept through without coughing.
Of course I did not sleep through, the nurses and respritory people
were
in the room almost every 30 minutes or so.

I will try to keep you all posted on what is going on.

Keep the prayers coming

Lori (Christina's mom)

bcjjhh

09-16-2003, 04:05 AM

Elizabeth W. - September/99 Kid

Not much going one here with Elizabeth. She is in the 4th grade this
year. She is doing pretty good. We went to the SEMO District Fair last
night where she got to see monkey's, pet a baby alligator, seen a baby
bear, a porcipine(sp?), parrot, and went to the petting zoo there.
Along with myself and my dad, Elizabeth got to take pictures with a baby
Bangle Tiger Cub.

We had a lot of fun! Oh, she did get her hair cut..pretty short
too...she had it down past her shoulders a little now it's not even long
enough to have a small ponytail. She just had school pics done so once we
get them back I will send a picture of it. Everyone take care!

Rebecca (Elizabeth's mom)

bcjjhh

09-16-2003, 04:07 AM

Zachary T. - January/01 Kid

Well here it is another month gone by. It is hard to believe that
Zachary will be celebrating his 6th birthday next month. Some of you may
remember that two years ago at this time we were almost close to losing
him for the fifth time, my how time changes things.

Zachary is just loving being in kinderarten even though he is in a
class for speech impaired children k through 5th and he is the only
kindergartner in there at this time. His speech is coming along but still
severely delayed. He is acually able to draw stick figures now. Also
they told me last week at UCP (United Cerberal Palsy) that he was able to
peddle a small bike with training wheels for a small distance, I was so
happy, he is going to show all of the doctors that they don't know
squat.

As far as his oldest brother Vicktor (12) we are getting more and more
concerned. We are trying to get him into All Childrens in Tampa
Florida to finally get an "official" diagnoises of Autism. He is still only
functioning on about a first or second grade level. He broke my heart
the other day when he asked me if he was ever going to make it into
college, what can you tell a child like this ?

Well, I guess that is enough for now, I will write in later another
update.

Deborah (Zachary's mom)

bcjjhh

09-16-2003, 04:09 AM

Ricky W. - November/00 Kid

Hi all!

Just wanted to pop in and mention that Ricky is doing really well in
school. He's really liking it. It's the same school he was at the end
of last school year and for summer school, but he seems to have started
back refreshed, which is really nice. He did have some behavioral
problems there in the summer but luckily this school has permission (from
me) to restrain him gently and put him in a quiet room til he calms
down.

Anyway, he's so excited about it that he's been doing his homework at
day care rather than waiting til he gets home, which saves us an
incredible amount of time (the time spent doing the homework plus the time we
usually battle over doing the homework), meaning the boys actually get
to bed on time!

When it comes to the cystic fibrosis, Ricky has also been battling a
fungus in his lungs (an effect of him being on antibiotics so much) but
after a few rounds of prednisone and anti-fungal medication, he is
doing pretty well with that.

Andy started kindergarten this year and he's doing great after a little
adjustment period. This kid is doing advanced (for his age) math, I'm
talking 3-digit subtraction and multiplication and division etc., and
reading books, so he's a little bored in there, but I think he's enjoying
it. I had a SST meeting with his teacher and the day care lady the
first week of school to let them know about his perfectionism tendencies
and some other things. That was a good thing.

In news about me, I met a guy on the internet (before you all roll your
eyes and groan, read on). He lives in Portland, OR. We've met in
person a few times and he's wonderful. He's a pediatric nurse at the
children's hospital up there, and loves my kids (quirks and all) and treats
them well. And he loves me. ;) He's looking for a job down here (RNs
are always in demand) and plans on moving here in January. We would
get married at some point after that. It's all very exciting. :)

I spent the night in the hospital Friday with some sort of mysterious
intestinal ailment. This seems to happen every few months. Today I am
finally seeing a gastroenterologist so we can try to get to the bottom
of it.

Guess that's it for now... I wanted to thank you all for your
generosity
in sending cards and gifts. The boys love to visit their PO box and
see what's inside!

Rebekah (Ricky's mom)

bcjjhh

09-16-2003, 04:11 AM

Hi Stitchers, I wanted to let you all know I opened another child's quilt today. Katia relapsed at the end of August and is in need of a bone marrow transplant (they have no match as of yet). Her quilt is an emergency quilt and it has a due date of October 20, 2003. This due date is firm as we want to get her the quilt as soon as we can. Please visit Katia at the follow page...
http://lovequilts2004children.homestead.com/Katias.html

I am also a bit behind with my emails (sign ups). Please be patient, I am working my way through them. I still have 74 to go. I am working on sign ups that were submitted on September 3 and after.

Thanks all! Cathy - lovequilts.org

bcjjhh

09-18-2003, 03:43 AM

April W. - December/01 Kid

April is home from the hospital!!!! YAY!!! She came home yesterday,
and with the doctor's blessings, went back to school today! She was
really excited to be going back! She kept up with most of her school work
while at the hospital, so she shouldn't have to make up to much now
that she is back. Amy and Emma and J.P. were very glad to see her home!!
They were very excited! Lots of hugging and cuddling went on around
here! I was very very happy to have her home again too, as was Johnny!

She is doing very well, and her weight is slowly climbing back up
there! She weighed 101 when she came home yesterday. Down a bit from where
she was, but the Dr. seems to think that she will gain it back soon!
She is eating more now, so that is good! She is still a bit tender from
her port-a-cath surgery, but she is doing GREAT! Just wanted to let
everyone know, and to again, say Thanks for the cards and letters and all
of the prayers!! Lots of love from April and myself!

Jane (April's mom)

bcjjhh

09-18-2003, 03:49 AM

Ashley J. - July/01 Kid

Ashley's officially a kindergartener and she is doing very
well in school. She was sick about a week and hated to miss a day of
school. She fought me every morning when I told her she had to stay
home
today. Let's hope she continues to have that eagerness for school as
she gets older. We received progress reports from school yesterday,
Ashley's doing well and is listed in the top 5 in her class. Her brother
is an A student so thankfully I have two kids who love school and love
to learn!

Ashley's liver disease continues to be stable. She goes back in to the
hospital for more testing at the end of October. We are trying to wean
her from one of her medications. However, we are starting to see some
increase in two of her liver enzymes so I am not sure we will take her
off this medication completely. She has been doing so well for so
long, why try to fix something that isn't broken. I will not risk her life
for the comfort of medication free!

We have a new addition to the family. Skylar is 3 months old and is
very energetic and happy. Skylar is a Raggamuffin kitten. Ashley is
so excited and just adores her new little kitty. He has brought lots of
smiles and laughter to our family.

I want to thank all of you who continue to send Ashley cards and gifts.
She appreciates them and is constantly asking who they are from. She
doesn't understand that these cards are from strangers, people who care
about her.
She thinks they are all mommy's and daddy's friends. And all of you
are
my friends! Thank you!

Laurie (Ashley's mom)

bcjjhh

09-18-2003, 03:51 AM

Lauren L. - July/01 Kid

HI,

Lauren is doing great. She started Kindergarten September 8th. She
loves it once she's there. But she gives me a tough time waking up in the
morning! She also doesn't like the homework. She gets it every day! But
who likes homework?

She also started her Dancing school lessons in Ballet & Tap. She loves
it so much. She's already talking about the recital in June!

As far as her health. She's doing great. She will have a MRI sometime
Oct/Nov.

Little Kayla is getting bigger by the day. She can't get enough of her
BIg Sisters Lauren & Alex. They're constantly giving her hugs & kisses!

Sandra (Lauren's mom)

bcjjhh

09-18-2003, 03:54 AM

Nicholas D. - August/01 Kid

Nicholas is doing very well. His last scans were again clear, so he is
still in remission. He has been discharged from outpatient physical
therapy. He has finally mastered his bike again and is now working on
his rollerblades! So his balance is almost all there again! He started
on Zoloft 3 weeks ago and we have seen a dramatic change in his
behavior. He is no longer so withdrawn and timid - he is particapating at
school, volunteering to go in front of the class (last school year this
would have sent him into tears just thinking about it) and doing very,
very well socializing in general. It's really wonderful!
He still requires a full time para pro at school and extra time for his
work, as his thought processing skills are damaged from all the chemo,
radiation, and brain tumor - but - everything is alot easier for him
now that he has the Zoloft!!!

Thank you all so much for your support - Nick sends you all his love
and big hugs

God Bless

Pam (Nicholas' mom)

bcjjhh

09-18-2003, 03:57 AM

Originally posted by bcjjhh
Nicholas D. - August/01 Kid

Nicholas is doing very well. His last scans were again clear, so he is
still in remission. He has been discharged from outpatient physical
therapy. He has finally mastered his bike again and is now working on
his rollerblades! So his balance is almost all there again! He started
on Zoloft 3 weeks ago and we have seen a dramatic change in his
behavior. He is no longer so withdrawn and timid - he is particapating at
school, volunteering to go in front of the class (last school year this
would have sent him into tears just thinking about it) and doing very,
very well socializing in general. It's really wonderful!
He still requires a full time para pro at school and extra time for his
work, as his thought processing skills are damaged from all the chemo,
radiation, and brain tumor - but - everything is alot easier for him
now that he has the Zoloft!!!

Thank you all so much for your support - Nick sends you all his love
and big hugs

God Bless

Pam (Nicholas' mom)

bcjjhh

09-18-2003, 03:58 AM

Kendra M. - May/00 Kid

Hi Everyone,
Kendra has been having seizures just about everyday for the past
month. Her doctor increased her seizure meds to help control them. We
are hoping that will help. Kendra enjoyed her summer somewhat, she
couldn't go outside to much because of the heat, she can't breath well when
it's very hot, even with her oxygen on. We are going to take her to the
zoo because it isn't so hot now, she loves animals. We know she will
really enjoy it, because she loves watching funniest animal videos on
television, but she is still into Barney videos everyday.

Kendra is still walking pretty well, maybe a little slower, and she
seems to get tired very easy. She has gained a little more weight, she
is up to 67 lbs. now, and getting taller. She will be 9 yrs. old next
month (Oct 24). She started her home schooling last week, she sure did
miss Mrs. K (her teacher). She was so excited when she walked in the
door. They had a good time on the first day of school, but before Mrs. K
left for the day Kendra had a seizure.

She is still enjoying all the cards, letters and gifts from everyone,
she loves looking at the cards.
We would like to thank Louise B. for all the cute cards she sends to
her.

Thanks, to all the wonderful people for all the cards, letters & gifts
sent to Kendra. Thank You for Caring so much!

Melva (Kendra's mom)

bcjjhh

09-18-2003, 04:00 AM

Katelyn Rose H. - February/99 Kid

What happened to summer? It seemed to just vanish in the blink of an
eye. Too bad, because this summer was truly one of the best on record
for the family. With me not working (I need a job now though!), I was
able to spend lots of time with all three children. We had a great
Disney Cruise vacation and did quite a bit of volunteer work for our local
school Athletic Booster Club, which made Sarah my cheerleader and Seth
my long-distance track guy happy. Katy....well...Katy has yet to bring
to the forefront any of her athletic talents other than marathon
talking!

Katy started 4th grade this fall, and the change in her since starting
the HgH injections is nothing less than miraculous. She only goes to
resource for occasional "catching up", but is staying on task MUCH
better and completing classroom work without constant redirection. She is
doing grade level work, (above in reading) and believe it or not, has
received A's on both of her spelling tests so far...which signals
significant improvement in her short term memory. If this growth hormone
weren't so expensive, I'd sure like to try it.

Katy's cataracts are ripening, and she'll see the eye doc next month to
determine when we need to plan her surgery. She doesn't seem worried
about it at all. She continues monthly therapeutic phlebotomies, which
we hope to be able to discontinue by spring or early summer. Her
nightly injections are SO simple and she is such a trouper...giving them to
herself without even an ounce of drama or fanfare.

To close out our great summer, our entire family participated in our
local "Light the Night" walk which benefits the Leukemia and Lymphoma
Society. Some of you may remember that Katy developed a rare lymphoma
prior to her transplant, and that is when we became involved with the
LLS. We set a fundraising goal of $300, but soon after got some bad news.
One of Katy's really good buddies at the Houston Ronald McDonald House
had relapsed after enjoy 4 years of remission. Katy was devastated and
angry. So, she decided to raise her goal to "infinity" (her term) and
went out seeking all of the donations she could get. She sent out
e-mails (with mom's help) and wrote a letter published in our local paper
pleading for donations to help support her walk in honor of her friend
Caroline. Overall, Katy raised almost $1600.00, and boy was she proud
of herself. And boy, were WE proud of her. She continues to be our
constant source of pride, joy, sometimes aggravation, but mostly laughter
and happiness.

Thank you all for continuing to keep our precious ray of sunshine in
your thoughts, hearts and prayers!

Mary (Katelyn's mom)

bcjjhh

09-18-2003, 04:03 AM

Brandon M. - April/99 Kid

Hello Everybody

Brandon is doing great in the 5th grade - but yesterday he had to have
a new port-a-cap but into his chest because his old one quit working on
Thursday. But he is a real trooper - he came thur it with flying
colors.

He is home today with grandma and grandpa getting spoil very rotten but
that what grandparents are for.

Also, I was reading Elizabeth information and we went to the SEMO
district fair, too. Brandon got to see all the anmimals, too. But it
will not take any pictures with them.

Also, we put items in the fair like sunflowers that we grew, peppers
and
other produce. Plus this year Brandon put a clay lizard that he made
during the school year last year and he got a 1st place ribbon. He was
so happy for his ribbon and he also got first place on his sunflower
too.

Just wanted to let everybody know that he is going very well consider
the operation that he had yesterday - and a BIG thanks of all the
cards, letters and gifts that he received everyday.

Thanks again.

Lisa (Brandon's mom)

bcjjhh

09-19-2003, 03:49 AM

Chase C. - April/02 Kid

Hi Everyone,
It was two years ago that Chase was diagnosed with a malignant brain
tumor and tomorrow he will have his port removed. What a milestone!! The
support you have shown has helped us in so many ways. Please keep him
in your prayers.

God bless,
DeAnna (Chase's mom

Chase C. - April/02 Kid

Chase had his port removed today. The surgery went well and was over in
about 30 minutes. He was hurting right after he woke up but he's
feeling good right now. So far, the pain med is working well and his
appetite is good. He's had chicken and ribs already.
Thank you for the continued prayers.

DeAnna (Chase's mom)

bcjjhh

09-19-2003, 03:52 AM

Christina M. - October/02 Kid

Good evening,

Well things are looking better. Christina had a good day today. She
is
doing so much better than she was a few days ago.

The plan is for her to get discharged tomorrow and then home on
Thursday. :-) She will be going home with the Bi PAP machine and on iron in
her TPN and on Epogin IV (this will be once weekly) and then also with
the Lasix, though that will be monitored according to labs and such.
Also the calories in the TPN have been lowered. Hopefully with these
changes we will see some of the extra weight come off, and the extra
fluids come off too. She is doing well with the Bi PAP machine, I don't
know if I would be able to have something strapped to my face and blowing
air at me. But, she will tell you that it helps her and for that I am
thankful.

Christina is still complaining of chest pains from time to time, but I
guess nothing showed up on the echo or the ekg.

I talked with Dr. DelaMorena about her prognoises for Christina, and
she
told me that she is pleasantly surprised as to how well she is doing,
since the BIPAP, she feels that she will hit a plato and will do good
for quite a while. She says that she would not expect anything accute
to happen. It was so good to see her smile like she was when we were
talking. A lot of different things can change things quickly, but if
she keeps doing like she is, thing should be okay for a while, I pray
a
long while. And she wants us to come back in a month.

I was breathing a little bit easier after talking with her. We will
still take it day by day and watch things closely and be grateful for
each minute we have. But for now, I have my little girl back, she is
talking, agruing, and giving us all a 'pre-teen' attituded, even though
she is only 10. While 10 & 1/2 as she corrected me today.

I want to thank everyone for praying and ask that you don't stop. She
is such a fighter and I don't think she will give up. I am happy to
know that she is at peace what ever may come, but she is not going to
leave without a good fight. God is moving!!!!!!!!!!!!!!!!!!!!

Lets just pray that she stays infectious free, and she can get stronger
each day. I am going to make her start walking some, (she does not
know
this yet). We had a bet this evening about a show and I told her if I
won she had to walk the hall way up and down one time, if she won she
did not have too. But I think when we get home I will have her walking
at least 10 minutes for a couple days a week and see how she does and
then maybe get her walking a few more days a week. I will just watch
and
see how she does and take it from there. She needs to be conditioned,
and the stronger she is the better she will do.

Once again keep PRAYING,
Love,

Lori (Christina's mom)

bcjjhh

09-19-2003, 03:54 AM

Christina M. - October/02 Kid

Good afternoon

Well, like always something happens. We are not getting out of the
hospital today. In fact Christina is still sleeping even as I type
this
and it is about 3 in the afternoon. We hope that she is just wore out.
She did not have a good night.

I will let you all know if and when we do get to leave. This just
really bummed me out today. But, I am glad she is somewhere where she
is being taken care of.

Oh the Kidney doctor came by this morning and started Christina on IV
vit D. Also wants to keep the lasix going. She says she expects her
numbers to climb, because she thinks the labs right now are deluted
from
all of the fluid she has on board still. She was a little concerned
that even with the lasix and what Christina is putting out she is not
losing wt. She is still real puffy in the face and upper chest area.

Well that is about all for now. Until later I guess

Keep praying don't ever stop

Lori (Christina's mom)

bcjjhh

09-19-2003, 03:56 AM

Caleb L. - August/02 Kid

Caleb's legs showed some improvement by skipping last month's
vincristine. He resumed his Vincristine today at a lower dosage. We must find a
safe, theraputic dosage to fight the leukemia without further damage to
his legs. His ANC is higher than desired, so he has had his oral chemo
increased as well. He is now seeing a counselor to help deal with his
anger over having leukemia. He is also grieving over the unexpected loss
of our beloved family pet, Sugar Bear. His Daddy has not been able to
find a permanent job. Life has been constant turmoil for Caleb lately.

Debbie (Caleb's mom)

bcjjhh

09-22-2003, 04:36 AM

John M. - June/98 Kid

Hi all:)
Things are plodding along here:) Dh is heading to Poland this week for
two weeks. John's school is going well and Tommy's doing great!!
John gets mail occasionally and loves it:)

Julie (John's mom)

bcjjhh

09-22-2003, 04:37 AM

Annie L. - May/01 Kid

HELLO..
ANNIE IS HANGING IN THERE. SHE JUST HAD A TIME WITH A TOUCH OF
PNEMONIA.
SHE IS ON THE ROAD TO RECOVERY. SHE IS ON BREATHING TREATMENTS AND
ANTIBIOTICS. BECAUSE OF THIS SHE HAD TO POSTPONE THE 3 MONTH CHECK UP
TO NEXT THURSDAY. I WILL LET EVERYONE KNOW HOW THAT GOES.

KEEP PRAYING FOR US AND GOD BLESS YOU ALL.

Julie (Annie's mom)

bcjjhh

09-22-2003, 04:38 AM

Brianna B. - April/01 Kid

Hello, School has started back up and the teacher and therapist are
coming back out again. I am so excited for we should be getting a new
indoor swing for Brianna some day this week yet.

Brianna woke up Monday with a fever and sounding congested, so I took
her to the doctor and she has a left ear infection, throat infection in
which we are still awaiting a throat culture on, and upper congestion.
Her fever has broken and her congestion sounds a bit worse. I will keep
you posted on her recovery from this. Hopefully she is feeling better
before her Birthday party on Sunday.

Thank you to all who have sent birthday greeting to Brianna, I have
been saving all the cards to read to her at her party and on her Birthday
the next day.

Yulinda (Brianna's mom)

bcjjhh

09-22-2003, 04:41 AM

Jennifer M. - November/98 Kid

Hi Everybody

Jenn is doing ok ! She is off the steroids which she hated cause it may
her gain weight. She gained nine pds in 3 weeks. I never seen her eat
like that !! Course she is still very beautiful to me but you know how
teenagers are LOL !!

Her MRI is Oct 7th and that one will really tell us if this is tumor
growth or swelling. I am a wreck cause she been having problems with neck
and back pain. And her eye sight is still not 100% and she is getting
tapping and weird spells again. But she has a great attitude and is
handling things well. (Better than her old Mom) LOL !!

Sam is back at school and is doing ok. She had some bad mornings but
all and all is ok. It is a new school and not in the best neighborhood
but she seems to like the school. She is on Strattera which seems to be
helping some. So I guess we see how it goes (Last year I had to have be
tutor the last three months from the fits she was having in the
morning) But she is trying and I am proud of her !!

Christina is back in college. She really loves it she is in the Student
Government and making new friends. I am so proud of her I could bust
LOL !!

I am doing ok. Been really busy doing some extra cleaning. School stuff
is killing me this year !! So I feel like I am either cleaning or
sleeping LOL ! But the extra money helps !!

Ok gonna run !! Please stay safe !!

Love & Hugs

Reni (Jennifer's mom)

bcjjhh

09-22-2003, 04:44 AM

Jimmy K. - October/98 Kid

Hello everyone.

Im so glad we did the Disney trip when we did because we have some new
developements with Jimmy. When he wakes up in the mornings he is unable
to bear weight on his legs properly. We think it has to do with the 2
large screws he has in his right sacral joint. As the day progresses he
seems to do better, but the last few mornings he's developed a definate
limp. The tumors that were removed a couple of years ago were
classified benign because of their size. They removed them, no chemo and they
just "rebuilt" the whole joint with artificial bone and his own bone, and
of course the 2 huge screws. He's had several regular x-rays over the
years to make sure the screws are still in there solid. Everything has
looked fine, but plain x-rays do not detect what MRI's or Cat scans can.
So, I have put a call into his Orthopedic Dr. because the neurologist
cant take on this problem. Please pray that its just stiffness in the
sacral joint and not anything else. Thank you everyone for all your
prayers in the past. Remember Jimmy-Joe in your prayers again. I believe in
the power of prayer and I know there are a LOT of strong prayers out
there!!:0) Much love to all.

Lin (Jimmy's mom)

bcjjhh

09-22-2003, 04:45 AM

Ricky K. - June/00 Kid

Hi everyone
Ricky is doing well he started third grade and had a great first week
and a half but then got sick and missed almost 2 weeks after that he
just started back Mon and everything seems to be good so far. He has his
first science test tomorrow I can't believe how big he is getting! He
had a healthy summer but fall has started and so have the bouts of
illness he gets down when he has to be sick for so long but he gets through
it bounces back and doesn't mention it much this time he did ask me why
do i always have to be sick he was crying i think he was just tired
from not feeling well and not leaving the house in over a week cause once
we talked about it and he got the frustration out he was fine! Thank
you for remembering him in your prayers and well wishes God bless you
all

Heather (Ricky's mom)

bcjjhh

09-22-2003, 04:46 AM

Hannah F. - February/03 Kid

Hey guys! Whew! Well, we are off to a running start and it is great to
be busy, but boy, oh, boy is it tiring! Hannah has started preschool,
gymnastics, ballet/tap, and music starts next week. She loves it all and
you all should have seen the smile on her face when I picked her up
from her first day at preschool on Wednesday. She was just pure light!

Hannah had chemo this past Tuesday and everything is looking good. She
did a great job being brave with her needle in her port (in her chest),
but we had an accident as she got up from the floor where she was
playing and stepped on her tubing and pulled the needle halfway out of her
chest. The screaming was intense and I am sure the pain was the same.
Nurse Eddie came to the rescue quickly and had to push the needle back
into the port and then flush the line with saline to make sure it was
still working and it was so we continued with the chemo and got out of
there!

Hannah is getting excited about Halloween already and says she wants to
be a doggie, hummm, imagine that! If any of you know where to get a
cute little dog costume, please let me know.

Hannah is up for her next chemo towards the end of this month and this
will include a spinal tap, so pray that this goes well. As usual, I am
scared of the spinal because she always has such a hard time. Another
prayer request, if you don't mind, is that Hannah is able to stay well
as she eases back into the mainstream of life as a little
irl/preschooler. I have sent letters home with our phone number to all the parents of
children she comes in contact with in hopes of finding out if Hannah is
exposed to anything.

I pray, and hope that you will too, that these parents will help us out
in this situation. I must say that I have already gotten several phone
calls from parents concerned in one way or another. They have all been
very nice and understanding and I am feeling reassured that way. I just
hope that she can get through the winter season without coming down
with anything major that would hospitalize her or anything like that. I am
holding a double edged sword because I want Hannah to take part in kid
stuff, but that includes being exposed to all of the normal kid
sickness. I just think she deserves to be a kid.

Traci (Hannah's mom)

bcjjhh

09-22-2003, 04:48 AM

William Edward S. - August/03 Kid

On August 1st, William finished his chemotherapy after being on it for
3 years and 2 months. We were at the beach with friends and it was not
a big deal. We are very excited, but a little anxious too. He does
continue to take an antibiotic each day for 2 more months. The following
week, William went for a follow-up visit and his blood counts were
perfect. Again, one month later in September he went to the clinic and his
counts continue to be good.

We thank God so for this. William has begun Middle School and loves it.
He is not missing school like he has for the past 3 years and he seems
to be flourishing. He has loved going to his PO Box each day and comes
out every time with the biggest smile on his face. He can hardly wait
to tear into his mail and see where it is coming from. I, of course,
read each and every letter and am moved to tears at how kind so many
people are. I have been humbled by this experience. I tried at first to
answer each piece of mail that had an address, but I have fallen miserably
behind.

I thank each one of you and am still trying to continue the thank-yous.
It has meant so much to William and was a great diversion as he was
adjusting to a life without chemo. It has also meant the world to me to
know that so many of you have added William to your prayers. May the Lord
bless each of you. Thank you so much,

Beth (William's mom)

bcjjhh

09-24-2003, 04:29 AM

Katia S. - March/03 Kid

Help Katia collect postcards
We are trying to show her the world :)

September 21, 2003 7:55 am
Â
Katia has had a horrible night, really. She can't stay away from the
fevers. This morning she is at 103.2 and that makes her shaky and
miserable. She has had so many runny diapers in the night also and she hates
the discomfort of being cleaned up. Please pray for her comfort. That is
so important to me. She is on 3 antibiotics and we are not sure why she
can't shake these fevers. She did finish her chemo late last night so
hopefully she will recover her counts some and that will help her thumb
to heal and her bottom to heal some. She just stares at me when she
fills up a diaper like she knows it has to be cleaned but she hates all
the fuss over it. Poor baby. We now have to wait for her counts to rise
some so she can again be knocked down with the radiation. I am looking
at the radiation as the only way to rid her eyes and brain of her cancer
and prepare for the transplant. I just pray she can handle all of these
treatments. Thank you so much for checking on us. I am sorry this can't
be more positive but we are both completely exhausted right now and
know we are just headed for more and more. I do pray she will heal enough
and keep the fevers away enough to go to Ronald McDonald house for a
few days but right now i don't see them releasing her.

5:30 PM
Well today is not getting any better, YET:) We are trying to keep
positive and lighthearted. Katia and I are listening to Raffi (ALL DAY!).
She hasn't eaten for days and didn't even drink anything yesterday but
today they want to do a CT SCAN of her belly since she can't stop pooping
and the fevers are still going on. Well they have her drinking 10
ounces of the contrast juice which I am having to bribe her, force her and
plead with her to drink. We do have 3 hours to get it done but it isn't
as easy as I thought it would be cause her throat is sore and she keeps
gagging. The fevers are maintaining around 103. She started another
antibiotic and also a medicine to fight fungal infections cause they think
her thumb may have fungus and her hands are all peeling pretty bad
(just the finger tips) but it seems like layers are dropping. This never
happened before. A lot of things are going on that we didn't expect. BUT
the chemo is stronger this time. She got the rash all over her head and
upper body again but they are trying to stay ahead of the itching and
they are doing a good job at that. Let's see, what else. Her left eye is
almost completely swollen shut? We don't know why. There are no answers
for that yet. She did get swabbed to send off some samples of her nose,
rectum, and mouth. She didn't like that at all! Other news? YES!
Postcards! 56 so far:) She really loves all the pictures. We are getting some
fantastic traveling in:) Right now, that is our link to the outside
world. I have some from North Carolina and I told her, "That is where all
the rain is coming down." She is able to link things together using the
postcards and the news:) She has been telling me all day that she loves
me which just warms my heart especially since I am the one that has to
pester her so much. She looks like she is just worn down and miserable
but I get smiles out of her and she was even singing with the Raffi
video which just shocked me to hear. She is such a precious little DOLL!
Thank you for checking up on his. I have to cut this short cause she is
digging at her eyes and face.

8:30 PM
Okay we went and had the CT Scan, took 2 tries, the first time she just
screamed so we had to come back upstairs and give her some "dopey
juice" and we went back down and that worked. Then I heard them saying she
needed a chest x-ray also (which hadn't been run past me yet) so I asked
and they said the CT Scan is showing "something" in her lung and they
are trying to order it right away for tonight? Now we are in the room,
Katia is asleep, waiting to find out what is going on. I have no idea
but I just have this nervous feeling going on inside my chest. Please
pray that it isn't anything serious.

September 22, 2003 7:25 AM
Nothing happened last night. We waited until about midnight but
radiology never called for her so I guess it will be done this morning. We are
up bright and early (about 5:30 AM) due to a lot of commotion on the
floor. It is sad but there are about 5 babies up here right now and of
course babies wake up hungry and they make sure to announce that. It
breaks my heart that they are here though. I will update as soon as I know
anything. I rather x-rays be done during the day so her regular doctors
can look at them and give me answers. I am not sure exactly even WHY
they are running the test but I know the nurses can hear a problem when
they listen to her but it can be a number of things some I would worry
about and others would just mean more medicines. I am exhausted right
now so I can't think to type so I will update when I know anything.

10:00 AM
Chest x-ray done (no results yet). Infectious Disease came by and
looked at her rash and her THUMB (they took a sample from the thumb to test)
and they are ordering more stool samples since she is on 4 antibiotics
by IV and one by mouth and STILL has a number of runny diapers. Katia's
left eye is more swollen right now. I am not trying to sound completely
negative. She will still smile and watch her little movies. The picture
at the top is a smile to say hello to all of you:)

1:15 PM
Okay, some results are in and the prayers do help! The chest x-ray
"looks" clear but since the CT Scan showed something, the will repeat the
x-ray tonight or in the morning. All the other tests (labs) are still
pending. There are so many things pending I can't hardly keep up with
them. Her thumb hopefully will start healing with all of the antibiotics
and fungal medicines. Her White Blood Cells are totally wiped out. I
think this is the lowest they ever went. They have never just been gone
but now they are at 0.01. So hopefully when the counts start coming back,
things can begin to heal. Katia is puffy all over since the only
nutrition she is getting is through fluids so they are going to give her
something to drain some of that water and see if the swelling will go down
on her left eye but they want to do an MRI again of her eyes to see
what is going on anyway. That is a concern to them because it doesn't make
a whole lot of sense what is going on there. Aside from that, we did
have fun with mail. Katia has had 8 runny diapers since 7 AM so she is
wiped out but when the mail lady knocked on her door, Katia sat up and
said, "Come in, come in! My mail!" That always makes the people
delivering the mail, and me, very happy to see her perk up. THANK YOU SO
MUCH!!!!

10:15 PM
The runny stools have stopped:) Her fevers are gone:) She is very puffy
from a lot of fluid retention since she isn't eating and getting all
her nutrition via IV fluids. So she has gained about 6 - 8 pounds of
fluid which we are trying to drain with Lasix tonight. Boy, is she peeing!
She needs to get some scans of her eyes but her face is too puffy right
now. They want to repeat the chest x-rays probably tomorrow and we are
waiting to find out what is going on with her thumb. It is purple
(about 90f it) and hard with a blister on it. It is very painful to her
right now so she is very protective of it. I want to thank everyone sending
Katia the sweetest little care packages! You make her day and for
everyone praying, I guarantee you are making a difference. That was proven
with these chest x-rays. First of all when I updated and asked for
prayers last night, my heart was pounding and I was so nervous but I felt
calm after a while just knowing the prayers were going out from all of
you. The postcards are amazing. There are many beautiful ones, funny ones
and some that are so interesting showing me things I never knew. I feel
like we are on a trip. Katia loves all of the pictures. She loves the
bridges and buildings and flowers and animals and of course the Mickey
and Minnie ones. She has gotten a letter from "Minnie Mouse" and "Baby
Mickey". She loved those!!! She still is all big on going to Disney and
this is keeping her positive about the whole thing. Thank you for
hearing what I say and responding to it. We are mailing out about 15 of
"Katia's originals" to some of you that have mailed the self addressed
stamped envelopes. It is turning out to be a fun project that Katia and I
enjoy working on. She doesn't feel to great to sit up for long but we do
a little here and a little there and it is nice. Last night we were up
changing a lot of dirty diapers and waiting for x-rays (that didn't
happen till morning) and tonight will be changing a LOT of wet diapers.
She is soaking one about every 20 - 30 minutes so hopefully she isn't as
puffy tomorrow. Thank you so much for ALL of your prayers. Thank you so
much for your "Love Packages" and "Smile Packages". Thank you for
participating with the postcards and always the cards!

continued

bcjjhh

09-24-2003, 04:30 AM

September 23, 2003 8:40 AM
We just returned from a chest x-ray which they had wanted to repeat.
Please pray it is clear. I have a good feeling it is. I can't really put
my mind to update on Katia right now. I am just going to have to take
some breathing time and get my wits back together. I can say this. I
know there are a lot of new angels in heaven that we have come to know and
I am sure there are mountains being moved by them to pray for Katia.
How do I know that? Well, over the last year, it seems that so many
beautiful, kind hearted children have passed away and earned their angel
wings to Heaven. They were some of the best children, most loving and
angelic children here on earth. I cannot imagine what glory they will bring
to Heaven. The choir must be magnificent in Heaven. Playtime must be
filled with joyful laughter and running and flying and just pure
excitement! I try to imagine how happy these children must be but I always get
such a feeling how missed they are right here on earth with their
precious families that stood by them and fought the fight with them. The
parents and families that cried when these children hurt, laughed and
smiled when tests came back positive, had broken hearts when labs came back
with the wrong numbers and then had to find a way to graciously let
their child pass from earth to Heaven. My heart goes out to these
families, literally I feel like pieces of my heart and spread throughout the US
and from side of the world to the other. Caringbridge has allowed us to
come together and share our stories with the world but at the same
time, share the heartaches that we all are facing at these times. Something
that has always been "Someone else's story on TV" has now become my
family's reality on a daily basis. Something we try to face with a
positive outlook, gracefulness, and just pray that God's grace gives us the
strength each day to get through just to face another day of the same
day. I pray our journey will end with a cure for Katia and all the
children, adults and families going through this day to day battle, minute by
minute roller coaster and a journey that no one should ever have to
live. God bless each of you. Hug your families, your children, your
spouse, everyone and just tell them each day how important they are and that
you love them. Do something spontaneous and sweet for them that lets
them know, "Hey I was thinking about you and I wanted to make you smile."
Get a cake and have the bakery write, "Today is a special day because
of you!" Send flowers or balloons to the one you love just to brighten
their day. Sit down and just color a picture, even if you are 70, you
are never too old to just color and smile for yourself.

Tracy (Katia's mom)

bcjjhh

09-24-2003, 04:30 AM

John C. - February/03 Kid

Hello everyone! John had his quarterly spinal tap on Sept 12, it was
all clear!!! the spinal itself went well, but he had a bad reaction to
the sedation and hallucinated for about 45 minutes. From now on he will
get his spinal in the hospital as a same day surgery. I never want him
to go thru that again. i am still having a hard time convincing him
that the monsters he saw were not real!!! Anyway he is thriving and happy
and doing well in 3rd grade. Our favorite parts of the year are coming
up- we decorate for Halloween (mostly pumkins and scarecrows- no gross
stuff) this saturday, on Nov 1st we decorate for Thanksgiving and the
day after Thanksgiving we decorate for Christmas! we have alot to be
Thankful for! God Bless you all- ! please send John a card for the
Holidays!

Lorraine (John's mom)

bcjjhh

09-24-2003, 04:31 AM

Chad C. - June/03 Kid

We still can't believe just how fast summer went by.
Chad is doing well and loving middle school so much, it's really good
to see him this way. he goes in on the 30th for treatment, and as of
last counts all was stable. Here's to a great school year for all!

Jeannie (Chad's mom)

bcjjhh

09-24-2003, 04:32 AM

Kristen M. - March/03 Kid

Hello again everyone! It's been a pretty busy summer with Kristen +
Kristopher esp. since its been so nice out lately. Kristen took on a new
attitude lately learning some things from kids on the block,some of it
bad, some ok. The bad is that she sneaks outside when shes not supposed
to, or even when i'm not looking! That does not go well with Kristopher
because he wants to copy everything shes doing, and nothing but a
screaming game starts! So ,i'm at my wits end trying to get her to listen
and understand,and juggle mister terrible 2's Kristopher.

Besides that Kristen had to see a specialist Aug. 5th for her diarrhea.
So far all those test results came back negative, BUT we had to
schedule a biopsy on Sept.10th for her,with a Dr. Burman.,who will have to
take a piece of her lower intestine to find out whats what. She has
constant diarreah,and every other day she takes a half of an imodian tablet.
And tomorrow she starts her new pediatrician at Kristophers doctor,and
we have to see if all her shots are up to date,because she starts
PRE-KINDERGARTEN Wed.!!!! YEAAAA, i'm so excited about that, (me more than
Kristen), its 5 days a week, only 2+1/2 hours long, but its a start!!

I will try to update everyone on her surgery,as soon as it happens and
we get results, and Sept. 17th was Kristen's 5th and Kristophers 2nd
Birthdaysss!!

Thanks for all of you who send such special cards .. I never realized
how many caring people there are out there!!! Many Thanks!!!!

Silvia (Kristen's mom)

bcjjhh

09-24-2003, 04:33 AM

Jimmy K. - October/98 Kid

Hi!!

The Orthopedic Dr. from Miami finally called back. He wants to wait 2
weeks to see if Jimmy's limping gets better. If he gets worse we are to
call the Dr. a.s.a.p. and he'll get him in! I guess the Dr wants to
wait, because normally they give "limping-with-no-pain" a little more
time. I felt better that he made this assumption AFTER reading the x-rays,
which he said looked fine. The screws are intact and things still look
solid in there. So, we are on "Limp watch" and Im saying the Novena's
that it doesnt get worse!!!! There's still the question of weather or
not he has scoliosis in the area of the lumbar??The regular x-ray showed
something in reference to that. The plan is if he is still limping
around in 2 weeks, we'll go to the Hosp. in Miami and have other scans
done to determine whats up. The other thing it may be is muscle strain
from the Dystonic spasming. But I noticed the limping is after he is
asleep all night. It takes him about 3 hrs. before he can walk again without
any trouble. Well, all we can do is wait & see. Thank you to everyone
for their prayers. They sure make a difference when your facing these
situations and its nice to know people out there care. Hugs from little
Jim.
Lin (Jimmy's mom)

bcjjhh

09-27-2003, 03:28 AM

Austin P. - September/01 Kid

Austin began school! That is our most exciting news. One day he
couldn't be around more than 5 people at a time and the next we were
surrounded by hundreds of kids and parents on the first day of school. He's
had a few unexplained fevers since then and 1 ear infection. He still
has a fungus on his scalp that is making his hair fall out and they are
checking on the cataracts on his eyes. We go to Duke next week for our
every three months checkup. Thank you so much for your many prayers!

Bobbi Jean (Austin's mom)

bcjjhh

09-27-2003, 03:30 AM

Aschdon B. - June/03 Kid

Hi all, I am writing in request for prayers for Aschdon. He is still
doing ok but it looks like his allergy cold has turned into a cold and is
moving into his lungs. I have been up with him all night. It doesnâ€™t
help everyone else in the family as a cold as well. Aschdon is on
antibiotics already so there really isnâ€™t much else we can do for him
besides pray that he gets better.

On the good note, his surgeon called yesterday and said he thinks
Aschdon has healed nicely from the leg surgery and we can start physical
therapy again. Yeah!! Until last night we were planning on him going back
to school next week but now I am not sure if that is going to happen.

Also Sahala was taking the dog for a walk yesterday when a cat crossed
their path. Well my little dachshund does not like cats so she tried to
take off. Sahala held tight but in the process Mandie had wrapped the
leash around her legs and then tried to run again. Any how Sahala took a
bad fall. Her nose from the tip to in between her eyes are scrapped up,
her forehead has pebble imprints, her front teeth hurt, she scrapped
about two inches of skin off of her left wrist (I am really glad she is
not left handed), on her left elbow she has a patch of skin missing (oh
and when I say scrapped it is more like peeled off) on her left she on
skin missing on her wrist and about an inch on her elbow, and she had a
bloody nose as well. Please pray that she will heal well and that the
kids at school with not be cruel by making fun of her.

Kenya (Aschdon's mom)

bcjjhh

09-27-2003, 03:31 AM

Chad C. - June/03 Kid

Chad is home bound until at least the 30th now. His counts have bottom
out and he has a viral infection in his mouth, pretty painful for him.
Will update again as needed.

Jeannie (Chad's mom)

bcjjhh

09-27-2003, 03:32 AM

Katia S. - March/03 Kid

September 24, 2003 9:00 AM

Good morning:) The night went reasonably well. Katia had a few episodes
of runny diapers that woke her up but then she went right back to
sleep. Her oxygen levels are staying above 95 and this morning they are
staying right at 99o that is good. She is due to have a CT scan today
sometime. The biopsy on her thumb will take about 24 to 48 hours. She is
still C-Difficile positive so no leaving the room but she doesn't have the
energy to walk anyway. She is keeping a good attitude though
throughout. She only cries when she hurts and we are working on being nicer to
her doctor. Katia tries. I was thinking last night about the fact
sometimes Katia's page is so positive and other times I feel like I only
update with problems but then I feel the page is always positive because it
is filled with a positive attitude about how prayer really is working
for Katia and how her story has reached so many people and touched so
many lives. Right now, Katia is watching My Little Pony and carrying on a
typical "Katia morning conversation" with me. She is so sweet and I am
so lucky to have her in my life:)

7:38 PM
Katia has had a reasonably good day. She is having good oxygen levels,
the CT scan showed a little bit of (I forget the word) in her lungs but
not pneumonia. It is mainly, they think, due to the fact her activity
level is so low so her lungs aren't working as hard as they should. She
of course still isn't eating, however, she does ask for food.
We had a meeting today to discuss how the transplant search is going
and what the plans are due to the fact time is passing us right now.
There is a cord blood that may be a good try but then nothing else which
means no backup plan if the cord doesn't graft so it may be that we will
end up having to go to St. Jude in Tennessee for a new type of
transplant they are studying. Even though Myron and I are not a match, there is
a way they are using what we would have and do a different type of
procedure to then do the transplant. This is a very new procedure, very
new. I think the procedure sounds promising but the time it takes to graft
would be much longer and we would be looking at being in St. Jude for
months and then around Tennessee even longer. The problem with that is
what we would do with our life here? Our house, our kids, etc. It just
leaves a lot for us to figure out. Of course Myron and I would plan to
make the trip and be with Katia throughout but just so many other things
come up. I know we would make it work if it comes down to that because
whatever we would have to do for Katia is what we would do. We would
just be having to support and run two households. I don't know. I know so
many of you are concerned and are asking about what we are finding out
so I wanted to share this information with you as we have just been
given this information. All Children's is going to call around and find
out if they do the cord transplant here and it doesn't graft (since it
isn't a perfect match) than who would be willing (there is only 2
hospitals to chose from) to do this new procedure as a backup. Usually they
don't want to be involved as a second solution, they want to take the
case on immediately which would mean we would go there for the brain and
eye radiation, full body radiation and then transplant. That would be
right around the corner. The doctors here are still searching the
registry each day for a better match and let's just pray they find something
and we can stay here and have everything done here. That is best case
scenario BUT Katia is worth everything so we will do whatever we need to
do. Well, I am pretty stressed right now so I am going to try to get a
shower and wind down. Our minds are pretty well swimming more than they
were. Throughout all of this we face new dilemas everyday and we have
to figure out ways to work around and make things work. Now THIS is just
another HUGE decision to make. Please pray for us.

Tracy (Katia's mom)

spongebob

09-27-2003, 08:33 AM

giving it a bump

tigerskiss1963

09-27-2003, 12:17 PM

i have been to this site many times
i love reading about the children and how they are doing if they need any thing.
i know Austin and his mom Becky from another site they are all nice ladys and kids

Gia

10-02-2003, 09:39 AM

Bumping :p
{{{{bcjjhh}}}}

bcjjhh

10-07-2003, 01:28 PM

Chase C. - April/02 Kid

Chase is recovering well from his port-removal surgery. He's going to
school half a day and for the most part enjoying it. Thank you for
keeping us in your prayers.
God bless,

DeAnna (Chase's mom)

bcjjhh

10-07-2003, 01:29 PM

Davin R. - March/03 Kid

Greetings to our MACS friends!!

Just a little update on Davin...Davin had his three month MRI and it
showed no recurrent tumor growth...We were so relieved!! His next MRI
will be in November. He will remain on his daily chemo regimen for the
time being. Please continue to keep Davin in your thoughts and
prayers,
as this daily chemo tends to take a toll on him. But, we have to
fight
this beast with all of our might...Davin is a true warrior...always a
smile on his face. He is definitely our hero!!

Thank you so much for all of the cards, gifts, and words of
encouragement that we receive from all of our MACS family!! It helps
us
get through each and every day. Also, thank you so much for the
Disney
Gift Card that Davin received...He can't wait to go shopping!! I
think
the new "Finding Nemo" DVD that will be released next month is at the
top of his wish list :) .

And for an update on Davin's Map that we have hanging up...we put a
sticker on every city that mail comes from so we can show Davin how
much
he is loved and how many people are pulling for him in this fight...We
want him to know that he has so many people helping him to win this
battle and that he is not alone...We only lack FIVE more states to have
every state in the USA!! They are Mississippi, Hawaii, Wyoming, Idaho,
and South Dakota...WOW!!

Once again, THANK YOU SO MUCH for everything!! You all are truly
amazing!!

God Bless!!

Shauna (Davin's mom)

bcjjhh

10-07-2003, 01:35 PM

Katia S. - March/03 Kid

September 25, 2003 9:00 AM
We had an uneventful night which is GREAT! The runny diapers seem to be
slowing down. Katia is still pretty puffy. Her thumb? Well she seems to
have everyone confused. We are still waiting for results from the
biopsy on that. Katia sounds congested when she cries but since she shows no
pneumonia we are thinking that is because of inactivity. She does get
up and play on her bed some. I make her stand up and walk around on the
bed as much as she can to keep her leg muscles from getting weak. There
are still drives going on for Katia to find a marrow match and the
hospital is still searching in the registry so we will see if something is
found. A few people have told me that cord blood transplants are good
and I definitely agree with that. It isn't that we aren't comfortable
with the cord but there is not a backup plan here in case that doesn't
take and the hospital doesn't want to do anything to hurt Katia's chances
of having a plan B so that is why they are checking with these other
hospitals first. It may be that the other hospitals would want to be the
original transplant team so they can completely oversee her instead of
just getting her if the transplant fails. I am extremely pleased with
All Children's Hospital, their staff, their abilities and their sincere
love for Katia. This has become like home to us and at the same time we
are close to our home and our other 2 children. I know that Sharayah
and Tatiana would do whatever is needed for Katia. They are just
wonderful like that and love Katia and put her life ahead of their wants. It
would just be very hard for Myron and I to go with Katia and run our
lives here too. I know we could get someone ( a grandparent) to stay with
our kids and take care of our house but since Myron would be temperarily
out of work, that would be the problem - keeping up with our financial
obligations. We are praying that things will work out that we can stay
here in this hospital and close to our house. We pray that a perfect
match for Katia walks through the doors to a donor center and signs up
for the registry. Remember, even if it doesn't help Katia, it is helping
Someone in her same predicament. If it comes down to us having to go to
another hospital, then we would have to face that and figure things
out. I know God will put the right things in place for His plan. Tonya,
thank you for telling me to take things one day at a time. I am such a
planner and yes, it is true that with AML you can't plan anything, not
even your afternoon. I am just nervous that we will all the sudden be set
up for transport and then I won't have my head on straight to make the
necessary plans. Katia is sitting here looking (staring) at the door
for the mail lady to show up. That is Katia's escape each day. I think it
is cute that she has found such solace in her mail:)

9:15 PM
Today has been good. Katia has been in a decent mood with everyone.
Well yesterday Katia was still on her "dopey juice" from the CT Scan so
she was laughing and smiling with the doctor and I just had to take
pictures. It was a wonderful experience for her not to be screaming. Today
she has been more talkative with her doctors and nurses which is more
like the way she used to always be in here. Katia normally has a very
pleasant and outgoing little baby and we like to see that cause it means
she feels better. Her counts are still zero so hopefully they start
coming back up. I am praying a lot right now that everything will fall into
place. This has already been very hard on our family emotionally,
physically, financially and just in every way. I am so glad I have my little
family though cause we are all very supportive of eachother and that is
so important to me. Katia feels a lot of love from her family and I
think that really physically and emotionally helps her. Katia has learned
to pray when she feels bad or when I tell her someone else is feeling
sick. She even prays daddy is okay in his car when he leaves and she
hears me tell him to drive safely. She is just too sweet for words! I know
God has big plans for Katia in this life. She just has this look on her
face sometimes like she knows something I don't know. I love my little
baby so much and I could just kiss her and hug her all day, everyday!
Tatiana came home from school today sick with fevers. I am keeping her
home from school tomorrow and hopefully it is just that she is worn
down. That happens to her when she isn't getting enough sleep and she gets
the least little cold or something but she can't come visit right now
no matter what. I told Katia that daddy couldn't come tonight because
Tatiana was home sick and she prayed for Tati:)

Today is day #30 of being in the hospital. I don't feel out of place
here because we spent so much time here before but I am getting very
homesick, not for the house but for my home and our family eating dinner at
the table and just our routine. I miss Katia having the whole house to
roam through and I miss her following me around as I did housework or
hanging on my back when I checked Caringbridge sites. We did that
everyday, two or three times a day. I miss drinking coffee on the backporch
and looking for butterflies.

Okay enough self-pity! I know there are far worse situations than mine.
Myron is trying to work on his next CD project. We will again use it as
a way to gain awareness to the need for Marrow registration, blood
donation, and supporting these different organizations that research for
cures and better treatments. Myron feels so much better when he can be
doing something to help the situation. I know it is very draining on him
to keep on going day in and day out so this music helps him to
concentrate on something that he knows is so worthwhile. We were trying to find
a sponsor to help with the studio and production cost but now we feel
like we really need to push this along because time is just passing us
by and we feel very strongly about our involvement in this.
Of course, as soon as the CD is done, I will try to get the songs on
here. One is a type of thank you song to those people who help either by
being involved through research or treatment, financially or just
emotional encouragment. The other song is a lullaby to Katia:) She loves
both of these songs!!!

Well, I am not going to hold everyone up. I get very long winded. Oh,
yes. Someone sent Katia a pretty Lucite star with her name engraved in
it and a note that said, "You are a shining star." I did not find a name
but I want to say thankyou. That was so sweet.

To everyone who has sent cards, postcards, balloons, and packages,
thank you so much:) A line from Myron's song says, "Love comes back to
you... When you give it to someone else." That is so true and I just want
each of you that visit this site to know how very special you are to me
and my family. May God bless you abundantly.

September 26, 2003 11:50 AM

This morning has been a busy morning. Just a lot of small things going
on, nothing big but I find it hard sometimes to get on here and update.
Katia has a bad headache right now. She needs plateletes which she is
about to get. The night went very well. She slept throughout the night
and woke up around 5:30 this morning. Then we fell back asleep from
about 7:00 till 8:00 so that was a nice little nap. No fevers and no
itchies. Her right eye is causing her some pain but not enough to use
morphine. Her WBC is now up to 0.02 so we are headed up at least. Normal is
4.0-12.0

Tatiana doesn't have a fever today but she stayed home from school just
to be safe and take it easy today.

Myron is having to take some time off from work. His mind is just to
preoccupied an since he does airport security, his mind has to be fully
there. He is getting some lose ends tied up, trying to finish this CD
and continuing to push for the marrow drives and of course coming here to
see us each day. When he is here I want so bad to stay here and visit
but then I want to get out of this room too so I get torn in between. I
try to get out for just a little bit and go shower and get something to
eat but then I like to see him and Katia laughing and playing. That
always makes me happy. Myron has always been very loving and involved with
our kids and I am very lucky to have that and so are the kids. They are
all very close to daddy:) I will update later in the day when things
slow down.

3:30 PM
For those of you in the Tampa area, Katia's story will be on Fox 13 TV
.This is to raise awareness of the local drives going on in Tampa area
and to let people learn of Katia's story. FM 100.7 has been making
announcements today on her behalf also. I appreciate everyone's involvement
in this. "Love comes back when it's given to someone else."

As far as today has gone, we did get platelettes today so hopefully
that will ease headaches. She is still having a lot of runny diapers which
just really upset her BUT she is in a basically good mood. The effects
of her chemo (round one) are going away and soon (round two) effects
will start up. She should feel good for a few days though, I pray.

9:50 PM
Today has been pretty hectic but in a good way of course. I hope these
different news coverages will bring a lot of new registered donors:)
Katia requested that daddy bring her a little kitchen and she would eat
so...

continued

bcjjhh

10-07-2003, 01:36 PM

Of course, Myron brought this little talking kitchen today that is just
so cute!!! She cooked eggs, peas, and chicken. BUT the good news is we
did get her to drink some sips of chicken soup (real soup) and a few
bites of a dinner roll. HEY I guess I knew what she was talking about. I
am so happy she had those few bites and saw that it wouldn't make her
throw up. Katia has been FULL of smiles these last two days. She has
some bad moments when her eyes or head hurts and when she has runny
diapers but for the most part of her day she is happy right now! I am so
happy when she is happy. I have been able to sit and chat with her and she
is so smart about what she is going through. She really understands we
are pretty well stuck in the hospital until the leukemia goes away and
that the medicines that make her feel yucky are trying to make the
leukemia inside her mad so it will leave. She is a sweetheart!!! Her smile
just gives me a warm heart. Myron was playing "kitchen" with her and I
was able to go get something to eat. I have been trying to organize
things in case things get hectic when decisions are being made. Katia is
very happy (as happy as she can be) right here at All Childrens so I
pray things will work out that a perfect donor is found here and we can
procede with her brain and eye radiation and then transplant. That is my
hopes. God will work things out according to his plan. God bless each
of you that come by to visit Katia's site and pray for her. Thank you
with all of my heart. My family and I appreciate your concern more than
words can ever say. You are all invited to her graduation from
highschool someday!!!
September 27, 2003 10:20 AM

Well it is day #32 in the hospital. I feel pretty bad today and I am
not sure why. We had a decent night of sleep. Just regular things woke us
up. Katia's thumb is healing and she still isn't having anymore fevers.
That is just so great! I am praying her counts are coming up. There are
2 big marrow drives going on today and they were advertised on TV and
Radio yesterday for Katia so hopefully a lot of people turn out and I
pray there is a match found that will allow us to get the transplant
here:) Katia is in a good mood today. She has a headache but she is dealing
with it and not letting it really get her down. Every so often she will
just lay down and feel glummy. I can't type much right now. For some
reason this is blurry and it is bothering my head to be on here. I just
got a really upset stomach to start with and now my head hurts so I am
going to try to lay back and relax. I CAN'T get sick right now.

12:02 PM
I am feeling better. Katia let me take a little nap while she played
quietly with her kitchen. She is so sweet. She did keep asking me if I
was okay but her sweet voice never bothers me. I was just exausted I
assume.

9:56 PM
Well we had a very nice afternoon and evening. Katia has been in a very
good mood and full of energy. She is being sweet to everyone, coloring
pictures, eating a tiny bit (but that is better than nothing) and
playing with her kitchen set. Daddy and sisters spent the day at the Tampa
Convention Center for a Marrow Drive and quite a few people turned out
and registered. Myron made a shirt to wear by putting an iron-on picture
of Katia on one of his T-shirts. He is such a proud daddy! He did an
interview for a few of the news stations so they will be playing tonight
on some of the news. I teared up when I saw the first one just watching
people go be tested to see if they could help Katia. As I type this, it
just is coming on the news again:) God bless everyone involved and
participating!!!! God bless you!!! Katia is asleep right now and I just
want to watch the news and fall asleep with a smile on my face and a
prayer in my heart.

September 28, 2003 9:55 AM

Katia woke up this morning screaming about her eyes and the lights
again but she is doing better now. I always worry about that because we
really don't know how her eyes are being affected and she is too young to
really explain things to us. Other than that she had a good evening,
slept good and is doing okay right now. She has eaten a couple bites of
bread with butter and some small pieces of grapes:) That is good. I
really wish she would eat enough that she could be taken off the TPN AND
LIPIDS (those are nutrional supplements fed through her broviac).

Last night she ended up having her story on a few news channels. CBS
(Link to News Story video), ABC, FOX and Bay News 9 en espanol. This
morning she is in the St. Pete Times section 3B. It would be so great to
find a match through all of this or even to know someone finds a match
that is in a similiar situation. The people participating in becoming
donors now can join something called "KATIA'S LADYBUG GIFT OF LIFE DONOR
CLUB". There is a paper you fill out which is a way of sending Katia a
message. Yesterday it was really nice to read through the messages from
those donors that registered at the Tampa Convention Center. Our prayer
request right now is that the Transplant Coordinator will walk in our
room and say, "We found Katia a perfect match and everything is a go to
have her transplant right here." That is our wish. BUT our main goal is
to do whatever it takes to just give Katia another chance at life. If
we have to leave Florida than I am sure God will provide a way for
things to work out. God can and has worked many miracles and it is our
prayer that Katia will be an adult talking about the miracle of life she
received when she was 3 years old:)

Tracy (Katia's mom)

bcjjhh

10-07-2003, 01:37 PM

Maryanne D. - April/03 Kid

Maryanne will be going on her "Make A Wish" trip on October 11-14. She
wished for a trip to the Trapp Family Lodge in Stowe, Vermont. She
loves the movie "The Sound Of Music" and is really looking forward to
going. A local production company will be performing "The Sound Of Music"
and will be allowing Maryanne to the play and as far as we know, back
stage. Also, the great-grandchildren of the Baron and Maria VonTrapp will
be performing as well. They are planning on sending her to the Vermont
Teddy Bear Factory and Ben and Jerry's Ice-Cream.
Maryanne also attended the Broadway play of "The Sound Of Music" on
September 20 and she LOVED IT!!!!!!! It was just me, her, and her oldest
sister Stephanie, we went to lunch first and made a day of it. Of course
all the kids had to have a tee-shirt and at $15.00 a piece PLUS the
cost of the tickets, it wasn't a cheap day, but it was soooooo worth it!!!

We will update hopefully with a picture (or maybe a few :) after the
trip.

Maryanne continues to love the cards and gifts that still come, we
renewed the PO Box for a year, and I want to thank you all for remembering
Maryanne and her siblings and sending the prayers and well wishes.
She's doing well in her last year of treatment, about 10 months left of
chemo!!! YEAYYYYYYYYYY!!!!!

She had her spinal tap and chemo injected in the spinal fluid last
week, and no news is good news!! Again, thank you all and God bless. We
continue to pray for all the MACS kids, to their continued health and for
those not doing so well, we pray for their complete recovery and for
peace to the families.

Sheryl (Maryanne's mom)

bcjjhh

10-07-2003, 01:38 PM

Gregory G. - September/01 Kid

Gregory is doing fine and as scans are coming up we are a little
nervous
as usual, his CT scan is Tue. Sept. 30th and the MIBG scan starts Oct.
13 through the 15th.
Thats it for now, I'll update again once we get both of the scan
results.
Thanks,

Lorraine (Gregory's mom)

bcjjhh

10-07-2003, 01:41 PM

Joshua C. - October/02 Kid

Hi there,
Well, Joshua had a little excitement this week. He had been scheduled
2 weeks ago for a lot of blood work to be drawn so we can recheck his
immune system as well as take a look at his growth hormone level and
testosterone (to see if he is having premature puberty). When we went to
draw from his port 2 weeks ago, it wouldn't work and we had to stop
after the third try and wait to see if it would work another day. Well we
went on Thursday to see if it would work and it still wouldn't give up
ANY blood, in addition, everytime anything was injected through the
port, Joshua would scream in pain. So the nurse thought that maybe there
was a crack or kink in the catheter and he needed a special x-ray. Off
to interventional radiology we went where we quickly learned that the
catheter not only had broken away from the beginning of the port, but
the other end had moved far down into his heart. They admitted him right
away and put him on a monitor and strict bed rest until he could have
it removed surgically the next day. Thankfully, all went well, he had
no problems through the night and he was discharged the same day as his
surgery. They did get all of the bloodwork he needed while he was
asleep for his surgery and so we have to wait and see if his immune system
is better. If it isn't, then he'll have to have another port put in so
we can start the IVIG infusions again. I'll know the results on
October 3rd, so I'll write more then.
THANKS!!

Renee (Joshua's mom)

bcjjhh

10-07-2003, 01:42 PM

Chloe A. - January/03 Kid

Chloe is doing great. Her hair is coming back. It has now been four
months since her stem cell transplant, and she is feeling well. As the
sixth of seven children, she is having to adjust to being "one of the
kids", but she still gets a great deal of attention. It is truly a miracle
that she is still alive, and we are cherishing every day we have
together.

Trey (Chloe's dad)

bcjjhh

10-07-2003, 01:45 PM

Katia S. - March/03 Kid

September 28, 2003 10:45 PM

First I want to say thank you for everyone who is participating in
these drives. Many people are helping to organize the drives, volunteer at
the drives or signing up for the registry. It is just amazing to me and
I know someone's life is going to be saved, a lot of lives. As a cancer
mom, I of course want my baby cured. I also see many families going
through fighting cancer and needing matches. Please always pass the word
on to your friends and families. I know plenty of highschool kids have
been interested but are not yet old enough. If you are 15 now, you will
be old enough in a couple years and I pray then, you will go register.
I never ever thought I would have a child facing this disease but I do.

I know it is a shame but I know that each day more children are
diagnosed and their lives and the lives of their families are sent into
turmoil. This effects every aspect of our lives. Nothing is the same or will
ever be the same again. Even during the months that Katia was in
remission and we were enjoying seeing her running around and playing, it was
always in the back of our mind, the "R" word, relapse. Plus during that
time many of our friends relapsed or passed away. Our whole lives are
centered around cancer, saving our daughter and helping to find a cure
to help all who have to face this battle. I am a very strong person but
I am a very compassionate person. This fight has definitely changed my
life. I look at other people's children even in a whole new way. I just
pray for their health.

I don't know them but I pray they stay healthy and have a great fun
life. I pray the worse thing they have to face is their childhood
immunizations. Please continue to keep our family in your prayers but then say
a prayer for everyone in the world. So many different people have
cancer but they are all someone's spouse, son, daughter, aunt, uncle, mom,
dad, cousin, friend, etc. Nobody should have to face this ever in their
lives. Nobody should ever have to watch a family member go through
this. I thank God every night and throughout my day for His grace, my
family and friends and for each and every one of you who have become a part
of my life through this page. God bless you for caring enough just to
say you care:) God bless you.

Thank you so much for the cards and gifts you are sending. Thank you so
much for the postcards. Thank you so much for the balloons. Thank you
so much for letting me know you are praying. Thank you so much for
letting me know you check a few times each day. Thank you so much for
passing Katia's name, website and mailing address along to your friends and
family. Katia loves the cards and gifts and balloons and postcards and
they make her happy, very happy! I like to see her be the 3 year old she
is opening packages and cards. When she gets a letter, she tells me to
read it to her. She really has a great heart!! Katia is going to change
the way cancer is looked at somehow. I know she has a huge
responsibility in this life. God has given her a divine plan. She has wisdom in her
eyes and compassion in her heart but yet she is THREE years old and her
smile could set off fireworks!!! God bless each of you.
September 29, 2003 1:11 PM

Sorry to be updating so late. Busy busy morning but for the good. Katia
is feeling quite well and we are getting a lot of feedback from some of
the news coverage. Some results are coming back for some lab tests! Her
thumb looks great. It was a big scab and now the scab came off to a
"beautiful new thumb" as she calls it and she promises that she won't suck
her thumb ever again! I hope not because that was very bad. Also the
stool samples came back negative but they need 3 negatives to release her
from her room so we are waiting for some poopies!!! Come on poopies!!
Let's see what else, a lot of people are showing up to the marrow drives
and we are so very thankful for that.

There is another big drive tomorrow at University of South Florida in
the Phyllis Marshal building from 11AM-4PM. If you need more info, call
Florida Blood Services at 1-800-68-BLOOD. Blood type doesn't matter for
those of you who are asking. You do need to show up with a form of
identification and let them know you are there for Katia. There is a
special paper to fill out. We are praying so hard something is found so we
can stay here. Please continue your prayers. We do believe prayers is
what has gotten us this far with Katia and I KNOW for a fact prayers is
what gives me the strength to get through each day and our family the
strength to go through these struggles and still find smiles and laughter
each day.

God has blessed us with so many people praying and showing Katia such
an outpouring of love with cards and gifts and the postcards:) Today was
a great mail day. I think mainly because they didn't deliver her mail
on Saturday so it was two days worth:) She had fun though. She is wiped
out right now from so much fun. Her counts were going up but today they
dropped back down again so hopefully she stays away from getting sick
again. Her eyes still bother but only on and off during the day and when
they hurt sometimes wearing her sunglasses is enough but other times
she goes into hiding under her blanket or puts her hand to cover her
eyes.

I was watching her sleep last night and she was smiling on and off.
Thank you God for giving her sweet dreams last night! Oh, she also ate a
whole piece of bread yesterday and a few gummy bears!! Awesome job! This
morning she had half a piece of bread with some butter. AND she is off
of the medicine she takes by mouth 4 times a day. She hates that
medicine but I always tell her it is to help her butt to get better and since
her butt bothers her so much, she takes the medicine! But she is off of
it for now. *****! I feel so bad having to give it to her. She cries
but she does take it. I think that is all for now. Today she hasn't been
too happy with the flash and since we can't have the lights on in the
room (bothers her eyes) I can't really take pictures. But hopefully that
will improve and not worsen. We are still waiting to do the MRI of her
eyes to see what is going on and also her brain to see what the lesion
is doing.

7:30 PM
This picture is Katia and I in our "Yellow Belle (from Beauty and the
Beast) Gowns". This is what the nurses and doctors have to keep putting
on when they come in so we decided to all dress up and take pictures.
Katia calls them "The yellow people" when they come in the room!
Today has been good. She was unhooked from the IV pole for about 3
hours so that was nice. She likes to walk around the room. Her uncle is
here visiting from Honduras right now so he came and spent a couple of
hours with daddy:) They played around and mommy got to go eat dinner
(yummmmmm). Katia's thumb is looking so much better.

Post card count (drum roles) 186!!!!! Can you believe it!!!!! Katia
loves going through them all. We are waiting to put them on posters until
we find out if we are staying at the hospital or not. WE REALLY WANT TO
STAY HERE! but, if not than we will decorate wherever we go. There is
another big drive for Katia tomorrow so I am praying something turns up.
I know they have some results from the search they did Friday but I
haven't heard yet. Let's see what else. The TV crew from Univision is
coming to the hospital tomorrow to film her some in her room. Myron will be
at a Marrow Drive so they will go interview him there (the channel is a
spanish channel) and then they will come get the footage here to edit
in.

I think it should come on the evening news. They are still urging
people via radio to go to these drives and from what I understand a lot of
people are stepping in to help promote these drives. All I can say is
THANK YOU! THANK YOU SO MUCH!!! Well, Myron just left here and Katia is
now asleep so I am going to try to sneak out to get a shower and try to
go to sleep earlier tonight than last night! I am so tired and I keep
getting headaches. I need to get some serious shuteye:) I require beauty
sleep.

Katia is always adorable!!! I have to go kiss her, she is smiling on
and off as I type like she knows what I am typing. She had a good mail
day and I thank each of you for that. I am not getting to all the
postcard email addresses but please know we are getting them and we appreciate
them so much. I try to let people know when their packages arrive. I
know I would worry not to know if something was received.

Love,

Tracy (Katia's mom)

bcjjhh

10-07-2003, 01:46 PM

Kady L. - December/02 Kid

Hello: Kady twisted her ankle at school a couple of weeks ago and was
having trouble getting over the pain due to her muscle weakness. I was
called to school last Monday because she had her first major low;
however, I gave her Coca-Cola and she seemed to be fine. This is her first
low without hospitalization, so I'm hoping that her body is coping
better when she has a low. She is doing good at knowing the symptoms. She
is having a terrible time adjusting to not being like everyone else in
her class. I don't see how kids can make fun of others for being
"slow". Kady is SO sweet and just takes it. Then... she comes home and
cries. Kids can be so mean, yet I don't think they realize how much it
hurts her feelings. She looks forward to the encouraging mail that she
gets from all of you!

Kristi (Kady's mom)

bcjjhh

10-07-2003, 01:47 PM

PeeDee G. - May/02 Kid

Peedee has been off of treatment for almost 7 months now and we savor
everyday. His continued remission is not a given but we are oh so
grateful for the simple but full days that we have experienced since he came
off of active treatment. My two sisters brother mother and stepfather
chose to value their own comforts before the concern of my son and
subsequently we no longer talk any more at all, but if that is the highest
price we have to pay it is a bargain. I held my son as e walked outside
this evening and you could feel the change of the season as there was a
chill to the air and I mused inwardly at the blessing it was to have
him for yet another time of year. I held him tightly and thanked God for
allowing my son to make it this far. Will this be a new reality? It
sure is a blessed experience. Warm thought s and appreciation go out to
all those that supported us thru the tough times and I hope to reply to
all the mail shortly-I delegated it to the wifey but the huge pile of
mail remains untouched. Thanks to all.

Pat (PeeDee's dad)

bcjjhh

10-07-2003, 01:50 PM

Bailey J. - December/01 Kid

Bailey started preschool a month ago and is having the time of his
life! He loves it! I was class mom today and I think I had more fun than
he did! Just seeing him interacting with other kids was so neat!

We are headed next week to Disneyland! We are looking forward to a
great time!

Thanks for the continued support!

Kelly (Bailey's mom)

bcjjhh

10-07-2003, 01:51 PM

October 1st, 2003
12:57am EST

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
MAKE A CHILD SMILE
http://www.makeachildsmile.org
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Hello to all,

The Featured Kids of the Month page for October is already up!!!

Meet Jackson, Cierra and Selena!!

--Jackson, 10 years old has an Undiagnosed Neuro-Muscular Disease

--Cierra, 5 years old has Cystic Fibrosis

--Selena, almost 3 years old has Neurofibromatosis

**Reminders**

--October Birthdays--
02nd (1990) Lindsay S. - October/01 Featured Kid
08th (2001) Selena M. - October/03 Featured Kid
09th (1987) Kristina H. - December/98 Featured Kid
16th (1996) Caleb L. - August/02 Featured Kid
17th (1998) Jacob P. - September/02 Featured Kid
21st (1997) Zachary T. - January/01 Featured Kid
24th (1994) Kendra M. - May/00 Featured Kid
31st (1994) Connor H. - March/02 Featured Kid

--October Angel Anniversaries--
19th Takota M. - May/99 Featured Kid - 3rd Anniversary
21st Jonathan C. - August/01 Featured Kid - 2nd Anniversary

Please visit our site and mail a card and/or gift to our featured
children today!

Please remember our Birthdays and Angel Anniversaries too!!

Thank you,

Alexandra Davila
Founder & President
Make A Child Smile Organization
http://www.makeachildsmile.org

bcjjhh

10-07-2003, 01:51 PM

October 1st, 2003
1:03am EST

Topic 1 - Inactive Kids
Topic 2 - New Baby!
Topic 3 - Disney GiftCards
Topic 4 - New Sponsors

-----------------------------------------------------
Topic 1 - Inactive Kids

The kids below have been placed on Inactive Status.

Please make note:
Cole F. - June/00 Featured Kid
Anthony G. - April/03 Featured Kid

Read below a message from both kid's moms.

What is Inactive Status?
Please read more about it at
http://www.makeachildsmile.org/faqs.shtml#inactive

============================================

We will be placing Anthony on the inactive list. He is doing great!
His last scan was clear. In October, he will be 6 months in remission.
He loves going to school and playing with his cousins. We definitely
love having our normal life back. I want to thank everyone who sent
him
cards and gifts. It really meant a lot to us and gave Anthony
something to look forward to. We truly appreciate everything.

Attached is a picture of Anthony in May. (now he has a full head of
hair)
We did the Relay for Life and raised $2,800 towards cancer research.
My husband and I went on stage and announced that Anthony was a
survivor
of cancer. It definitely was a very emotional night for us. We truly
enjoyed doing this event and will raise money each year for cancer
research.

Thank you,
Marlene (Anthony's mom)

============================================

At this time, I have decided to go on the inactive list for Cole. I
wish to thank you all for all your kindness, thoughts, prayers and
cards
that Cole has received over the past few years. It has always brought
joy to Cole and to the rest of our family. Cole has been doing well
and
has just begun Kindergarten. He is a very strong boy and will
continue
to "fight" and make us all proud of him. Again, thanks to all of you
for everything - we will never forget all the kindness you have all
delivered.

Dori (Cole's mom)

-----------------------------------------------------
Topic 2 - New Baby!

Congratulations to mom Christi, dad Chad and little brother Jacob for
the birth of their new bundle of joy, Jackson, on August 28, 2003.

Christi and Chad are also the proud parents of our lovely "Angel"
Jordyn
F. (March/00 Kid). Jordyn now watches over mommy, daddy, Jacob and
Jackson.

You can see a picture of Jackson here:

http://www.newbabynews.net/hospitals/storm26/public/storm26birthannouncement.pl?babyID=h26-3157

-----------------------------------------------------
Topic 3 - Disney Giftcards

If you're subscribed to our Kid's Updates Mailing Lists, you've
probably
read several moms saying "thank you for the Disney card"

Just wanted to let everyone know that just recently, thanks to all our
new Sponsors and individuals who donate to MACS, we began mailing
Disney
Gift Certificates to our Featured Children!

The girl's cards have Cinderella on the front and the boy's Mickey
Mouse
(of course!). The card says that it's "with love, from all supporters
of MACS", that's why recently you're seeing some parents thank everyone
of you on their updates.

For now, we just finished sending gift cards all the way back to
January
03 kids and will continue to send to each future featured kid.

In the past, we were not able to mail gift cards to all children all
the
time, only occasionally (used to be KB-Toys cards) because donations
were not steady. Some months very little, some months none at all.

Now with the continued support of our Sponsors and loyal individuals
such as Robert Flynn Jr. and Barbara Ford, we will hopefully go all the
way back to 98 kids.

Thank you all!

-----------------------------------------------------
Topic 4 - New Sponsors

Please welcome our new MACS Sponsors:

Six Sigma
http://www.6sigma.us
SixSigma.us provides Six Sigma Certification Training and Consulting.
We
provide nonprofit discounts and college credit is available.

Fashion Schools
http://www.fashion-school-finder.com
Fashion School Finder is your resource for finding fashion design
programs across the US.

Christian Singles
http://www.christian-singles-4u.com
Christian singles chat, matchmaking and totally free personals.

Holiday Rentals
http://www.findholidayrentals.com
Find the Holiday Rental you need with our unique directory of global
vacation rentals. From Florida to Florence, Spain to the vineyards of
France, quality villas, condos and homes available to rent directly
from
the owner.

Online Coupons
http://www.rather-be-shopping.com
Never pay full price online again when you use our collection of online
coupons and bargain hunting information. Great site to save a few bucks
around the holidays and birthdays!

Ringtones
http://www.compare-ringtones-uk.co.uk
Offers ringtones, java games, wallpapers backgrounds and more mobile
fun
worldwide.

Shoes
http://www.rebates4shoes.com
Comparison shop for shoes and earn a cash back rebate when shopping for
shoes. Great selections

Perfume
http://www.rebates4perfume.com
Earn a cash back rebate on perfume while you comparison shop at over
200
of the world's finest brand of perfume and cologne.

Cookware
http://www.rebates4cookware.com
Fill your kitchen with all of the kitchen tools, appliance, bakeware
and
cookware to make all of your meals special ones. Comparison shop and
earn cash back rebates!

Soul Food Recipes
http://www.bestsoulcooking.com
Sells a soul food cookbook that contains over 240 pages of recipes.

Automobile recalls
http://www.recalldata.org
Automobile recall information.

Car Insurance
http://www.cheap-auto-car-insurance-quotes.com
Paying too much for car insurance? Fill out one form and get online
quotes from multiple insurers in about 5 minutes. Also check out the
many types of discounts available to you, our extensive automotive tips
section, and resource guides for all 50 states.

Term Life Insurance
http://www.wholesaleinsurance.net
Compare Term life Insurance rates from over 100 companies in just
seconds. Save time, save money and protect your family.

Internet Monitoring
http://www.howtospy.com
Internet monitoring software allows you, as a parent, to track any
computer usage done by your child. Whether you simply want to make sure
your child remains safe online or need to make sure your child isn't
getting into trouble, you will know, instantly and secretly, if
anything
is wrong. Feel safe with your child in a chat room knowing that
everything typed and seen on the computer monitor is logged for your
later viewing. Everyone knows it is impossible to be with your children
every moment they are online, now, you won't have to worry when you do
have to leave to do house chores!

Disclaimer: We cannot warrant or sustain any information contained on
any website linked to or from MACS, including those of our Sponsors.

Alexandra Davila
Founder & President
Make A Child Smile Organization
http://www.makeachildsmile.org

bcjjhh

10-07-2003, 01:54 PM

Austin W. - September/02 Kid

Sorry it has taken a while to let you know how things went in Houston
but I just found out for sure results this morning. They have accepted
him to be listed for a transplant. He will not actually be on the list
for a few more weeks due to they have to get approval from the
insurance to list him. They are also wanting a HIDA scan to see what these
cysts are doing if anything and hopefully learn more about them. They act
as thought they have never seen these in a BA kid before, but if so,
very rarely. He also has cirrohsis. They thought they were going to
have to do a biopsy to find this out but the ultrasound showed he does
have it. They are also going to take him off of Augmentin and put him on
Bactrim. He is not immune to Hep A or B so we will have to get those
immunizations again. They want him to have a flu and pneumonia shot
when they become available.

We are so happy that we have taken this step in our journey with
Austin. Now, if he does get sicker, we do not have to worry about going
through all of this process. Please continue to pray for us, that God's
hand will guide and direct all the people involved in our lives now.
Austin is dealing with all of this really well, not that I ever thought he
wouldn't, and is feeling pretty good at this time. Some friends and
family are giving us a benefit on October 25th. This will help when he
does have to get his transplant. Alot of buisnesses and people have
made donations for an auction they are having. I am so thankful to
everyone who is helping on this. It is sure a blessing from God cause we
could not do this without help.

Becky (Austin's mom)

bcjjhh

10-07-2003, 01:54 PM

Shelby D. - March/02 Kid

Shelby is still doing well. She is in third grade and loves school.
We had a great time on our cruise vacation. She really enjoyed it. We
just adopted a dog from the Humane Society, a German Shepherd puppy.
She was really wanting a puppy.

I am planning on sending her new school pictue when it comes in so you
can update her photo.

Once again, thanks to all of you who are still sending her letters,
kids love to get mail.

Thanks again,
Debbie (Shelby's mom)

bcjjhh

10-07-2003, 01:55 PM

Ashley C. - November/02 Kid

Hello everyone... Ashley is HOME!!!!!! She is doing very well. She had
another MRI on Friday and it show no changes from the one from the week
before. She slept with Mommy and Daddy last night and it felt good
having her next to us without any tubes connected. She did not come home on
antibiotics like we thought she would. I will write more later when she
is napping(I can only hope she will).

One More thing, we had an MRI done last week Thursday and it showed the
tumor is smaller from even after the surgery. It was compared to the
MRI the day after surgery. It does show that the Ventricles are slightly
dilated which suggests slight hydrocephalous but there is no need to
worry at this time. She will have another MRI before she goes home to
check the status.

Norine (Ashley's mom)

bcjjhh

10-07-2003, 01:56 PM

Abby O. - January/01 Kid

Greetings:

We survived Hurricane Isabel! We have been without phone service on and
off. I have had a terrible time getting on the Internet.

Abigail's Dad, who is in the Navy, had to sail out to sea during the
hurricane so it was just Abigail, the pets, GOD and me.
The night before the hurricane Abigail wanted to make a cross and nail
it out in front so God would put a barrier of protection around our
house. There really are two crosses one tethered onto the other.

We had a place to go under the stairs just in case. We lost power the
first morning at 8 AM. It was quite a storm. We heard trees crash down,
sounds of metal groaning, noisy gusts of wind and sirens going off. We
listened to the radio every hour but didn't get much information other
than local damage reports. Every two hours we had cell phone contact
with my parents in CT and they watched the news and told us what part of
the hurricane was around us.

The dogs had to go to the bathroom so I put on a poncho and took them
out on the deck. I was literally being pushed around by the gusts of
wind. The dogs ran under the deck and then I couldn't get them out until I
coaxed them with treats! Yikes!

God protected us. One tree out in front of the house broke into thirds
with one-third going into the road and another third going into our
neighbors yard. Both parts far away from our house and our neighbor's
house. Another tree fell but is leaning up against our deck. It is our bird
feeder tree and it remains leaning on our deck with yet a better view
of our bird and squirrel friends!

There was early dismissal of school the day before the hurricane on
9/17, school was closed on the 18th, 19th, 22nd, 23rd, and late opening on
the 24th.

When Daddy Bert came home on Saturday 9/27, he had his work cut out for
him. Even Abigail was out there dragging branches to the curbside!

We prayed that all of our friends near and far would be protected.
Bless you all. That's it for now.

Love,

Suzanne (Abby's mom)

bcjjhh

10-07-2003, 02:02 PM

Katia S. - March/03 Kid

September 30, 2003 9:54 AM

I can't believe it is already the end of September! We have now been in
here 35 days and for 30 of them, we have been on isolation. It has gone
much smoother than I thought it would and I have to definitely thank
"Mail Time" for that. I would have figured Katia would have been climbing
the walls by now wanting out of here but she is staying occupied. My
story to her as to why she can't go out is that the halls are really
dirty and they have to clean them. I can't believe that has worked this
long! (The halls aren't dirty, they are quite clean!)
Well last night was a long night,long long night! Neither of us got
much rest. Katia was very restless and kept waking up and calling me for
all types of different reasons.

I just kept looking at the clock and realizing only 30 minutes or so
had passed since the last time we were up. I think she was basically
awake from about 11PM - 4AM and I would just doze on and off. She is not in
the greatest of moods today (I know why) and I am having to rely on
coffee right now to keep me going. She is going to be on the news tonight
and they are supposed to come film her here this afternoon. I am
praying she will be in a good mood (hopefully she will take a catnap this
morning some) and the filming will go smoothly. She doesn't really like
the lights they set up to film so I am trying to ease her into it today
by keeping more lights on in the room. I am trying to set up the room to
make it more cheerful looking.

I am glad we have been hanging up the cards and pictures around the
room. I think hospitals for kids should be decorated in cartoon characters
and cheerful paint on the walls. Katia does light up the room quite a
bit herself!!! I love it when she laughs. She has this belly laugh that
is just so cute! Well, Katia wants me to play with her and her dolls. I
have a hard time remembering their names (dolls should have name tags)
so she finds it funny to correct me when I call them the wrong name.
There is another drive going on for Katia today so pray that perfect
match walks through the doors.

UPDATE ABOUT MARROW DRIVES...
1:50 PM

I just found out there is going to be a mention of Katia's search for a
marrow donor and a lot of big posters and get well wishes to Katia on
Monday nights game Bucs vs Colts. Myron will be there in one of the
booths to be interviewed!! Katia's birthday this year in January was on
Superbowl Sunday when the Bucs won the superbowl so she thinks they are
HER team. I guess now that is more true than ever. If you get a chance to
watch the game, look for the mentions. They will be preparing Tampa for
the event asking people to make large signs for Katia. I guess they are
going to be doing that on the news stories these coming days. Myron
says quite a few people are turning out at today's drive at USF. The
building is kind of hard to locate on campus so hopefully those going will
be able to find the building and register. God bless Tampa Bay.

PS For those of you not in the Tampa Bay area, I think the game should
be played everywhere so keep an eye out and I hope you can see the
coverage. I am so excited about this!!!!

PSS By the way, I forgot to add earlier in the morning update... Katia
had her blessed thumb in her mouth. I about fell over. I can't believe
she would put that back in her mouth. Anyway, if it is a problem, then
we will have to wrap it up again. We cannot let that happen again to
her thumb! Also, she is starting to eat some bread and butter. She eats
about 1/2 the piece of bread two times a day right now but we are headed
in the right direction. She will be getting another bone marrow
aspiration done to check if her marrow is in remission probably mid next week
as soon as her counts rise enough. Still no word on anything else. AND
the thumb biopsy showed nothing to be concerned about, it was just
infected. I think that is all I know right now.

continued

bcjjhh

10-07-2003, 02:03 PM

October 1, 2003 8:40 AM

Good morning!! Yes, good morning!! I actually slept through the whole
night from like Midnight-8AM. That was just awesome!! Katia is still
alseep so I thought I would update here real quick and since I am just
getting up and I updated right before I fell asleep, the only thing I have
to update is the fact I slept! But I know that is an answer to a lot of
your prayers:) I did just check the guestbook and Katia will be so
excited to see that Mickey and friends said hello to her:) WOW!!! That is
unbelievable and she will just be all smiles (I try to read those in the
Disney Voices!) She has gotten a few letters from some of the
characters and she really gets a kick out of those! I have figured I will
decorate with the postcards during transplant and someone else emailed me the
idea of putting a lot in photo albums! That is a great idea, it will be
like a big vacation book (or a few vacation books) and they can be
sterile so she can hold the book in her bed!! Awesome idea! We are having
fun right now with coloring and making pictures for the "Katia
originals" and also for the doctors and nurses. I love to see Katia color and
explain to me what she is coloring. That seems so "typical 3 year old!"

Myron brought me the video of the newscast they taped here at the
hospital and Katia looked adorable and happy. I am sure people will respond
to that newscast! I am going to update pics this morning too so keep an
eye out for the new ones. I was going to do it last night but I
couldn't concentrate since I was so worn down. Thank you so much for checking
in on us and thank you so much for spreading the news about Katia to
your friends and families all over the world. There have been a few
people to actually make prayer cards and leaflets and pass them out to
others leading people to the website, asking people for prayers and making
others aware of these childhood diseases. God bless you.

Please remember we are not alone in this hospital and there are
hospitals of this sort all over the world and the sad news is we run short of
beds a lot. I wish there were no more newly diagnosed patients and
there were a cure to send us and everyone else home!! When you watch the
telethons, they are so real. Now they have just become way too real. God,
please allow someone to discover a cure but for now please find little
Katia her match.

5:10 PM

I am trying to stay very positive here:) It is hard though. We are on
day #36 in the hospital and day #31 in isolation. Katia is doing better
than me at not leaving the room. I do get out to go get my coffee and
run down to the cafeteria. I have gone home twice for a few hours. It
just breaks my heart that I can't get HER out of the room. We are waiting
for poopies to send off for more testing to see if she is still
positive and contagious. I certainly don't want to put harm in the way of any
other patients. Still no match has been found and everyday that goes by
just is harder to handle. I know the doctors are just kind of standing
by to see what happens with these drives before they make a decision.
Some people think we just don't want to go to St. Jude. Of course I do
want to stay close to home for the sake of our family.

We would be looking at being gone (and Myron out of work) for about 6
months. That is a long time and a lot for us to financially figure out.
That would be like pulling a rabbit from a hat. BUT aside from all of
that. The most important thing is that the procedure there would be a
lot more risky than the type of transplant we would hope for here. It
would take a lot longer to engraft which means a lot longer with no counts
and the worry of major organ damage. It would be months of isolation
and just a lot of the unknowns because the procedure is so new. It would
be hard for us to be able to talk to others that have gone through
this. I have kept up with quite a few people that have had more common
types of bone marrow transplants and they are scary enough! There are a few
patients here with their bone marrow transplants just behind them and I
watch all the things they face each day and it is just so scary.

I wish somehow there was just a way to know who would match Katia out
there and just go up and ask them, "Can we get you to do a Marrow
donation for our baby?" I am getting to the point I ask everyone I run into
if they are on the registry. We want to make T-shirts with Katia on them
with some type of a message to get people to ask us about her story. It
is horrible when as a parent, we feel like our hands are almost tied on
this. That is why I come here to Caringbridge. I know that a lot of
people come by here, read her story, pray for her and pass her story on. I
know that so many people have reached out and sent Katia a box of
goodies, balloons, cards, postcards, and etc. It is just amazing to me the
amount of love coming to Katia. God bless each of you, tremendously:)

8:45 PM

Okay, I didn't want to update too much earlier today because a lot was
going on with the drives for Katia and it looked like we were going to
have to back off on the number of people BUT... Myron had a meeting
today with Florida Blood Services and between them, our dear friend Tony,
and Myron they got a lot of great things worked out so here is the
schedule of events. Tomorrow, Thursday there was a drive for her at
Williams Middle School and some media focus on the kids there making cards for
Katia.

Tomorrow sometime they will be having the Bucs Team coming on saying
they were promoting Katia drives also. They were asking people to make
banners to bring to the game as Get Well messages and Well Wishes for
Katia. I will get into more about the game later. Also, there will be an
open call for people wanting to donate marrow at the Florida Blood
Services Building on Kennedy Blvd. They would appreciate you calling ahead
to 1-800-68-BLOOD.

The address is
4041 West Kennedy Blvd.
Tampa, Florida 33609
(Between Lois Ave & S. Dale Mabry)
This location will be taking people for the meanwhile and there will be
no charge for anyone wanting to sign up for the marrow registry. Just
let them know you are there for Katia. They should have some pink paper
for you to fill out for "Katia's Gift of Life Donor Club". They would
like you to call in advance but you can also just drop by there.

On Friday Outback Steak House in Brandenton and Sarasota are holding
drives. Thank you Outback Steakhouse!

On Sunday, there are plans for the Band "Democracy" to put on a
performance and hold a Bone Marrow Drive at the Tara Roti Shop on Bush
Boulevard and Nebraska. Thank you to all of those involved in putting this
together. There will be refreshments there. That is definitely open to
walk-ins and they will be having signs and people walking on the street
with signs to advertise and get people to come sign up for the registry.
This will be going on from 3PM - 6 PM.

On Monday will be the Bucs vs Colts game at Tampa Stadium. There will
be Florida Blood Services Blood Mobiles out there for Blood and Marrow
drives from before the game till after the game. They are planning to
get out there when during the Tailgating parties. Thank you Florida Blood
Services for putting this together:)

Then there will be a mention during the game for those who want to
donate and sign up for the registry after the game.
That will be a busy busy day and I am sure many people will register
that day!! Myron will probably be interviewed up in one of the booths
(that is still in the planning stage).

Okay, there is more!! The Florida Blood Services Kennedy location will
be open during all of these days for people to come to and sign up for
the registry. THEN on Wednesday there will be a BIG KATIA DRIVE DAY at
the Kennedy location for Florida Blood Services from 9:00 AM - 8:00 PM.
There will be food and drinks out there and maybe a band but there will
definitely be media coverage of this and I am so thankful they are
dedicated this day and facility trying to find Katia a match. No matter
what happens with all of this (I pray Katia finds a match) but someone
will definitely find a match out of all of this, maybe a few people.
Wouldn't that be GREAT!!! There are many people out there in need of matches
and we have really been trying to draw attention to that all this time
Katia was in remission. I am sad that it has come down to Katia needing
a match but I am praying this will help the registry.

Okay, Katia is unhooked from her IV pole right now and we want to play
and enjoy this good mood and all the hopes we are feeling right now.
To our Bone Marrow Match Person: Please be at one of these drives and
save Little Ms. Katia's life! We love you!

PS Thank you Tony for all you are doing to help push these drives
along. Thank you Florida Blood Services for putting all of your combined
efforts into this. Thank you Tampa Bay for participating. Thank you Tampa
Bay Buccaneers (the Superbowl the Bucs won last year was on Katia's 3rd
Birthday!) and Thank you to everyone who reads this message just for
coming by:)

Tracy (Katia's mom)

bcjjhh

10-07-2003, 02:04 PM

October 4th, 2003
12:03pm EST

Little mistake on MACS (hey, I'm human!!).

Selena (this's months child) is almost 2 years old, not 3 as I had
posted on the site. That's why we picked October to feature her since our
minimum age requirement is 2. I must have been brain dead when editing
the site for October.

She'll turn 2 on October 8th.

Thanks!

Alexandra Davila
Founder & President
Make A Child Smile Organization
http://www.makeachildsmile.org

bcjjhh

10-07-2003, 02:05 PM

Brianna B. - April/01 Kid

Hello, I just wanted to drop a line and say thank you for all your
prayers when Brianna came down with her cold. She is back to her regular
self again. Doing just wonderful. Yesterday we made some keepsake plaster
hand prints and footprints. They are so neat to have. She is getting
so big. With the ever so wonderful cold weather we are now getting she
will be kept indoors a lot more often now. But we dont mind. Brianna
received her indoor swing this past week and it is so nice to have.

Brianna's sister Donika is doing super. We got her mid semester report
and all A's with only 1B. I was so proud of her. Cross Country season
is over now also. Her team won 1st place in SLL championship. And last
night (friday) we spent the night out in the freeezing cold and rain to
watch the football game cause Donika (the middle school band) got to
play during half time. It is so wonderful to see how all these kids are
all growing up.

My exchange student Iris made home coming attendant for the 10th grade.
Not bad after only being in school and meeting all these new people for
3 weeks. I was very proud of her also.

Well Brianna is calling for me I need to go.

Thank you all for your continued support and prayers for Brianna. And A
HUGE THANK YOU to all the birthday wishes she received. IT is so neat
to see the girls spend the time reading them to Brianna and the smiles
they bring out.

Yulinda (Brianna's mom)

bcjjhh

10-07-2003, 02:06 PM

Zakki S. - November/02 Kid

Zakki visited Dr. Donner, his cardiologist, today after having an echo
last week. Although Dr. Ewing, who read the echo, wasn't too impressed
with what he saw; which included a right pulmonary artery that has
diminished in size greatly and left ventricle hypertrophy among other
things, Dr. Donner wasn't too impressed with the echo results at all. He
said after he looked at it himself, he decided the right pulmonary artery
is widely patent and not 6.5 mm [at least at the bifurcation.] Dr.
Rome did mention last March, when we looked at Zakki's last cath with him
in his office on his computer, that he thought that perhaps the RPA was
stenosed at one point and would perhaps benefit from a stent.
So now i'm confused. I strongly feel that it needs to be proven the
RPA
is ok. In Dr. Donner's words "he would be dead if it was only 6.5 mm"
[b/c the left pulmonary artery and lung are so small] But then Zakki
has world fame status for compensating in many ways!! So Dr. Donner said
he will look, think, ponder about a ct scan or mri although he isn't
thrilled with either idea b/c of artifact from the coils and stent. On
top of already confusing machine generated data Zakki's EKG showed
bundle branch block and left ventricular hypertrophy and ST segment issues,
so that didn't make me feel any better. But Dr.
Donner and his wonderful optimism thought the bundle branch block has
been there before also. Hmmmm.
Zakki did have a great summer except for the nasty coxsackie that hung
out forever so I can't believe that he is having things that would
normally show some big time symptoms. . .wouldn't they??
He is being tossed back into the arms of our favorite pulmonary
experts.
...we've done this before. . .no good reason for his heart to be having
any problems. . .it must be pulmonary in nature. . .lol. . .!! Dr.
Donner didn't really suggest doing anything different with his meds he
just said "Dr. Panitch will figure it out". He knows we are damned if we
do and damned if we don't. . .if i reduce the lasix he needs more
albuterol (which seems more heart related), if I reduce the prednisone he
needs more albuterol. . .and then this other little problem of it "being
fall" and October generally being one of his worst
breathing months. I've spent a lot of time talking to a lot of people
in a lot of places around the world about what else I can do from a
homeopathic or naturopathic standpoint to get him somehow off the
prednisone. This is what we are going to try - don't laugh - aloe vera juice.
And if that works i'll add some other "benign things" to both modulate
his immune system and bring back his adrenal function while "trying" to
reduce the prednisone. I'm talking to his endocrine doctor about
thymic immune protein which i wish we would have known about a long time ago
- particularly when it was found he didn't have a
thymus or what thymus he had was shrunken to smithereens and the
"piece"
that was sent to pathology wasn't thymus (this was during his first
heart surgery).

Zakki is playing fall baseball and enjoying the added activity. He
wants to pitch and is quite good but the mound is awfully close to
chest height line drives!! Hanz is still suffering from post traumatic
stress disorder and he still won't talk about his near death experience
(waterfall accident over the 4th of July). The fact that the CEO of
CHOP's son died in a very similar manner just weeks later didn't help
Hanz's psychological recovery. His leg gives him "trouble" but he doesn't
say much about it b/c one of the choices the military rescue team gave
him was losing the leg. This back to back with the whole
"mess" that was created around my own experience with disease mongering
(yes there are journal articles about doctors who tell healthy people
they are sick and/or going to die) and my own post traumatic stress and
psychological and emotional unraveling that created unbelievable stress
on top of already out of control stress. That would be stress that has
added up over the last 10 years or probably even longer! On a good
note i'm no longer eating 5 huge candy bars a day and instead taking tons
of vitamins and supplements - out of disabling fear - in hopes that
both will redeem many years for me. Drew is playing golf
nearly every day during the 10 days of repentence. He says he feels
closest to god on a golf course. His heart is ticking perfectly but we
are still working on the mental rehab of good habits. We are still
living in the Parkway House but we are going forward with mold testing and
we have our trial in November regarding the fire (the building fire
that happened 3 days after Drew's quad bypass). My parents leave this
month for Florida. They ARE our social life so it is always hard to say
goodbye for 6 months. We remind ourselves daily how lucky we are to
have Zakki's hero team of doctors and their confidence, calm, assurance,
hopefulness, laughter, and unwavering faith. Without
them we couldn't have gotten this far, unfortunately, not everybody
with MD after their name is like them! We hope to begin this next year
with less corticol savaging our veins, less fight or flight for all of
us, and a sense of inner peace. We certainly used up a lot of prayers and
miracles this last year!!

Stephanie (Zakki's mom)

bcjjhh

10-07-2003, 02:07 PM

Jacob P. - September/02 Kid

Hi everyone,
Sorry I haven't updated in a long time. I lost all my computer
information to a hard drive malfunction and have been busy getting
everything loadedback in .
Just last week, Jake celebrated 3 yrs.post Bone Marrow transplant #
2 !! Which means, he has been in remission for 3 yrs. now !!! Wow ,
does that feel good to write. Jake had an extremely poor prognosis . We
were told his chances of 5 yr. survival were VERY low.
He has recently lost several online friends to the same disease that
he was diagnosed with almost 5 yrs. ago. A fact that is so very hard to
face. We are very grateful for Jake's health ,in that perspective . He
continues to use a wide variety of medications . He goes to the
various clinics an average of 2-3 times per month. Though ,this may seem
like a lot to many, he continues to make baby steps by tolerating the
decreases in the dosages of medication. He has also needed only a minimal
number of doctor's visits, mostly to evaluate and monitor the Graft
vs. Host disease that has been so unpredictable for him .
In fact,we did all the clinic stuff yesterday. Endocrine was first,
Jake was a little toot thanks to the long wait . He was way boring when
the camera crew wanted to do some videoing of him for a TV documentary
? about human growth hormone ... He just sat and drew on some paper and
kinda ignored them mostly. The doctor was excited though...lol. She
examined him and relayed some info about some prior blood tests .
Essentially , Jake is short because he has been on steroids for so long. It
may possibly be somewhat due to the radiation too, but mostly the
doctor thinks that his height will begin to improve more towards normal
after the prednisone has ceased to be a part of his life. We are now going
to be followed every 6 months or so by the Endocrinology Dept. I will
add that to the list...lol His bone age was almost the same as his
chronological age so that's a very
good sign, as well. The hormone functions were all within normal range,
so we now have much hope that he will grow more normally when the
steroids are no longer needed.
Speaking of, our next stop was the Bone marrow Clinic where Cheryl (
his PNP)was happy about his progress ( skin, mouth and eye ( all GVHD
issues look really stable ) so, we can go down again on the prednisone
to 5 mgs /per day !!!! We will start with 6 mgs. ( from 7.5 mgs )for the
first 10 days or so then move to the recommended 5mgs until our next
evaluation visit in 1 month !! Jake usually has a hard time moving down
the standard 2.5 mg decline, so I decided to take one step in between
instead because that usually works for him. I want him to be off the
steroids ASAP but I am not anxious enough to risk another set back. We
will go the slow ,steady route this time. His blood work was great !! He
got 2 pokes this time and fought really hard not to get the second one.
He usually does really well but he was a real toot all day. We had
missed his prednisone and penicillin both Thursday and Friday morning He
takes them twice a day and sometimes 1 dose is all it takes to set him in
a crappy mood. Thursday, the meds. got spilled in the car
on the way to school.( I had it prepared, mixed in a med.cup to give it
to him as soon as he woke up enough ). This time, he was such a little
toot I just plain forgot to give them ,until we were half way to
Houston.

Here's the counts , WBC is a bit high ( 15.11 ) probably because he has
a little cough and congestion going on for the last several days ( as
do the rest of us !!) ANC steady at 6500. Diff. is segs 43% , lymphs 51%
, Monos 6% ...no unusual cells this time ( Thank God ). Hemoglobin was
14.5 , which explains all the energy ...lol platelets 338,000 all the
chemical panel etc. is about the same as last time or better. His BUN
has been a little high the last several trips and this time took a nice
drop to 12 , which I think is normal.
Our last visit yesterday was to Cardiology for EKG and that went well
but I won't know anything about those results for a week or so. I doubt
there would be any concerns from that. We are very pleased about all
of it !!! I keep saying to myself Goodness, a whole month without a
doctor's visit...It's like Christmas (only comes every once in a long,long
while !Hopefully this will become our new normal,but if not we'll take
it while it lasts..
I will close for now. A sincere Thank you to all who remember us
with
cards, thoughts and prayers. We are grateful for your efforts in
brightening our days.
WISHING EVERYONE BLESSINGS & LOVE,

Danette (Jacob's mom)