My name is Patty and our son Taylor was diagnosed with his brain tumor June 13, 2007 2 months before he turned 15. His will be 16 next month (August 26 ) and he was active in soccer, rode dirt bikes and loved to work on cars. Loves people and anyone who meets him leaves with a wonderful impression of him.
He had a partial resection and 2 weeks later they placed a bi-lateral shunt in to drain the fluid. Initial treatment was 42 days of Temdor and 6 weeks radiation. Our oncologist at All Children's Hospital in St Petersburg, Florida is working closely with Duke University.
He also was placed on Temdor 5 days on 23 days off. We started this in September 2007 and were on this treatment until February 2008. We showed growth so we stopped.
Since the tumors are created with 2 components the cyst began to grow. We had surgery Feb 13, 2008 where the doctors placed an Ommaya Resevouir to drain the fluid. Removing the cyst is not an option; it WILL grow back.
In March 2008 our doctors started my son on a new cocktail since the tumor grew 2cm. We are now on Avastin and Irinotecan which is administered via IV every 2 weeks. We are on this protocal until March 2009.
For the most part my son has tolerated the drugs, he is tired alot, not as social as I knew him before. Mostly due to the fact he was diagnosed between 8th grade (middle school) and 9th grade (high school).
Today (July 13 - ??) we are in the hospital with a serious infections called Serratia which developed around the Ommaya in his left side. They also removed his shunts since it also developed an infection. The doctors are hoping they do not have to put the shunts in and if so only one of them.
I know most of you are adults either husbands or wives; this type of tumor is rare in children. I am interested to know if anyone who is under the age of 20 who has been diagnosised with this type of tumor and if so how they are doing.
All I can personally say to everyone is keep the faith. Live your life. We allow our son to live as normal a life as possible. He went dirt bike riding last month and he felt and acted like a normal kid for a week. My family and friends are our rocks!!! Reley on them!!!!
Keep the faith,
Patty, Rob, Taylor and Montana