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Our Heroes
- a tribute to the children who have bravely battled cancer or who are currently fighting. We love you all!
 Hannah
Hannah's AFP increased steadily, but not dramatically, between June '02 - December '02. During this period Hannah had CT scans, ultra sounds, MRI's and an ultrasound guided liver biopsy with all tests being inconclusive. Twelve months earlier, Hannah's AFP was 55,000, when a liver biopsy revealed haemangioendothelioma. Due to her erratic history of AFP there was no real cause for alarm at this stage. In December her surgeon decided to take a liver biopsy which resulted in the left lobe of Hannah's liver being resected and the confirmation of hepatoblastoma. Hannah's treatment was a little different in that surgery was performed prior to diagnosis or chemotherapy. Hannah had 4 courses of chemotherapy (cisplatin) between January and March '03. She coped with both the surgery and treatment remarkably well, with vomiting being a minor issue during the last treatment. A year on and Hannah's AFP has stabilized at 9 after fluctuating for some time. She now has routine precautionary AFP tests and scans every 6 weeks.
-March 26, 2004 |
 Lucas In October 2003, three large tumors were discovered on Lucas’ kidneys after a routine ultrasound (done because of his still so large belly at 3,5 years). After 2 MRIs, 3 additional smaller tumors were seen making 6 tumors spread all over both kidneys. Diagnosis: Nephroblastomatosis / Wilms Tumors. Because he had a mild so far unrecognized form of BWS, Lucas had never been screened. After 12 weeks of preoperative chemotherapy, Lucas had surgery on February 17th to remove all lesions. He had an acute renal failure as major complication and stayed 5 weeks in ICU and hospital, of which 2 weeks in artificial coma. With many prayers and great doctors he made it through this very difficult time. Postoperative chemotherapy is 28 more tough weeks until September 2004. -- August 4, 2004 another mass was found on Lucas' left kidney. Subsequent biopsy confirmed it was a tumor. Lucas had his left kidney removed on August 13th. He recovered very quickly and was able to go home the following Monday. -- POSTED FOR LUCAS' PARENTS: The results were looking good and Lucas started back at school at the beginning of September, with no plans for increasing his treatment. We were all so pleased! But now further tests have shown that the tumor is aggressive and has broken out of the kidney and into a vein. They have gone through a long and traumatic process deciding what to do, getting opinions from around the world. Lucas is now going to start 4 to 6 months of intensive chemo with new products, probably ending with high dose chemo and a stem cell transplant which means 3 – 4 weeks in hospital at that time. Although this intensive treatment carries risks of its own, they have had to choose either this or not undergoing the treatment, with the risk of a relapse with metastasis and then much reduced chances of treatment. The other really important thing for us as a group at the moment is to be supportive of the very hard decision they have made. Please keep Lucas and his family in your thoughts. -- He is a great fighter and we are looking forward to soon reaching the light at the end of the tunnel.
-September 11, 2004 |
 Logan (in Hospital October 03 - 6 mos)
A repeated ultrasound and a biopsy in July 02 confirmed suspicions of first stages of Wilms tumors (3 months old). A central line was inserted and chemotherapy commenced, alternating between Vincristine and Dactinomycin weekly, with Ondansetron for nausea. After a few months, treatments were discovered not to be working and Doxorubicin was introduced. (This drug is harsher, and can cause weakness of the heart muscle leading to abnormal heart function. This was a concern because Logan had two holes in his heart and high blood pressure) Being a trooper he did not have many side effects, thinning hair, admitted to the hospital only a couple of times, generally just very low blood counts and isolation. Jan 03 Logan lost his kidney and continued with chemo a little while longer. Currently all follow-ups to date have been clean. -April 5, 2004 |
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 Katie
Katie was born on May 10, 2000 and diagnosed with BWS at birth.
-April 5, 2004 |
 Christos
Christos was born with a tumor on his left adrenal gland which was removed 7 days later. Lab findings on the tumor were inconclusive. After two mth. at the hospital, we spent 3 great months at home, aside from blood tests, before he started having abnormal tests results. A CAT showed a tumor in the same area as the last. At 7 mths old he had another surgery to remove this tumor. The surgeon discovered the tumor to be in his pancreas and found more on his liver. Christos was diagnosed with phase 1 pancreatic blastoma, successfully removed, and phase 4 , inoperable, Adrenal Cortical Carcinoma (ACC), an extremely aggressive cancer.
Christos got a Hickman line in his chest and in March 2002 started Chemotherapy. The routine became 5 days in hospital for chemo. & 4 weeks home for recovery. During the 10 mths. of chemo. he lost his hair twice & got two blood infections, blew 2 hickman lines & had it replaced with a port-a-cath & has had 3 different oncologists.
The nurses & doctors said he was the healthiest, happiest baby they'd ever seen going through chemo. He'd go down the halls of the chemo word in a walker faster than most kids ran. His oncologist said that he was responding to the therapy similar to the adults who have survived ACC, because until this point, no child diagnosed with ACC has survived. Christos is now 1 year cancer free. His blood is taken every 6 weeks & he gets CAT scans every 3 months and lesions on his kidneys are monitored. Christos is an amazing child and continues to bring sunshine to our lives.
-April 7, 2004 |
 Jessica
Jessica
was 10 months old when she was diagnosed with hepatoblastoma
in June 2001. She went through 6 cycles of chemo
(doxorubicin and cisplatin), over 5 months. After the first
4 cycles, which helped reduce the size of the tumour she had
the left lobe of her liver removed. She then had 2 cycles
of chemo after surgery. The cisplatin caused a mild high
frequency hearing loss, so Jessica now wears a hearing aid
in her left ear.
Jessica finished treatment 2 years and 5 months ago and all
is good. Her AFP is consistently under 3. She is a normal
happy 3 1/2 year old, who loves going to Kindy and playing
with all her friends.
-April 10, 2004 |
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At his birth (30th,April, 1995) Alexis had only right hemi (arm, leg, thigh, not on his face), fatter and longer. He had a screening protocol with U/S (not AFP, because, in France, BWS isn't common and not very known ..)
For his first birthday, U/S showed a mass on his right kidney. The CT scan showed a Wilm's tumor...
Genetic testing, made only a this time, diagnosed him with BWS .
He had surgery on May, 14th, 1996. They were able to keep his kidney ! From June 1996 through October 1996 : chemo with Oncovin and Actinomycine. He tolerated chemo with Zophren IV. He lost his hair then, but now his hair is curly!
He's in remission since ... He's safe !!!
He's a very happy boy who likes life (dance, theatre, singing and judo ...) , perhaps more than the others ! And us too! -May 10, 2004 |
Deztin
Deztin had
surgery on Friday June 4th. Fortunately his kidney was spared
and didn't need to be removed. Subsequent tests did confirm
Wilm's tumor though.
Deztin just started Chemo Friday. He did pretty good I think with his first time. He gets 2 chemo drugs Vincristine and Actinomycine <sp>. We're just hoping and wishing he does ok. We're getting him a wheel chair beginning of the week and starting to try and find him some hats. Taking him Monday to shave his head so he can just get used to the no hair issue, but like my mom an everyone says I love bald headed men anyway soo lol. Dez had his second chemo Tuesday. Still doing great - only thing he has gotten from it so far is a rash and diarrhea. - June 17, 2004 |
Lena - currently battling neuroblastoma -July 17, 2004 |
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Xavier - currently
battling hepatoblastoma -July 17, 2004 |
Wyatt - finished with chemo!!! for Wilm's Tumor - Hooray! -July 17, 2004 |
Owen - in remission
from Wilm's Tumor -July 17, 2004 |
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Joseph -
currently receiving chemo for neurogenic rests and a questionable
area on both kidneys; probable Wilm's -July 28, 2004 |
If you would like your child added to the BWS Cancer Tribute page, please send Julie a short description of your child's battle with cancer and a photo that you feel best exemplifies his/her fight.
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Disclaimer: All information on this site, except for that from the doctors and researchers, is given by volunteers and parents. The information given is non-professional advice only and is not meant to replace the medical expertise of your doctor. The creators of this web site do not censor or edit tips submitted and are not responsible for any errors or misinformation. Please consult your physician for more information on how best to treat your child.
this page last modified: 27/03/2007
