‘Some Kids Do Die’

Do you know that september is childhood cancer awareness month?
Will there be any mention of that in the next few weeks?
My 4 year old baby boy was killed by a brain tumor in january 08.
The kids seem to be forgotten in the cancer world

Dr. Grier is sadly correct in his statement - it is an obvious truth that is often eschewed. The darker truth is that no one can know with absolute certainty who will be the unfortunate ones.

In the early 80's, at the age of 11, I became a pediatric oncology patient at Dana-Farber. I was diagnosed with stage-3 alveolar rhabdomyosarcoma with a large primary tumor in my head that was inoperable. That diagnosis was revised months later to stage-4 when a tiny, undiscovered lung metastasis grew large enough to be found on a CT scan.

Since I had already received 6000rads of radiation concurrently with several cycles of the most effective chemotherapy known for my cancer type, this lung discovery was a very dire sign. It led Dr. Grier and the other doctors to conclude that the fight was lost. Dana-Farber would not provide further treatment. My final months were better spent free of the pains of treatment as death was inevitable and nothing new, medically, would be learned.

My family, especially my mother, would not accept this, and we sought treatment elsewhere.

I survived.

I cannot blame their experienced judgement. I know I was a rare case, and many families who want to fight on will not win. Kids do die, treatment can be futile, but doctors can be wrong. This uncertainty is the ultimate evil of cancer. My sympathies go to both the doctors and the families that continue to face this horrific struggle.

Dr. Grier sounds like one of the good guys. My problem with this and, for that matter, most articles with regard to pediatric cancer is how everybody seems to throw that word "rare" in with their commentary. A "rare" occurence is something that doesn't happen often. In this country a child dies every 4 hours from cancer. Does that sound rare to you? It soesn't sound too rare to me. Another misnomer is how people sound off about survival rates. The reality is that 1 in 5 die. The other 4 almost always suffer from long term health issues as a result of their outdated protocols. My son also had Wilms' Tumor, supposedly one of the more treatable cancers. He died from it just over 30 months ago at the ripe old age of 4 yrs 8 months. So much for survival rates. I too am an advocate for CureSearch and I will be heading to DC come this Saturday for the "Conquer Childhood Cancer-Reach The Day" event, my 2nd tour of duty. People need to get up and do something. Don't wait until a child you love is struck down. The incidence of pediatric cancer is on the rise not the other way around. Do something. Do it now. They are children and they need you.

My child is a Wilms Tumor survivor! At 6 yrs old the only battle he is still fighting is one of muscle issues that are directly linked to his chemo. regimin. I have started advocating with CureSearch and will be in DC in a few days to encourage our lawmakers to vote for the Conquer Childhood Cancer Act.

I lost a 6 year old to a brain tumor in 2001. We miss him every day. Like AJ, my son was bright, active, and seemingly healthy until just before diagnosis. The title 'Some Kids Do Die' makes it sound like few do. My personal experience has been that many still die, particularly those with brain tumors, neuroblastoma and relapses of leukemia. Attend a Relay for Life event this summer. Check out Caringbridge web sites. There are far too many young victims of cancer. For brain tumors, the treatment plan is the same as it was in 2001. Nearly every family is affected by cancer and it its particularly heartbreaking when it is a child. Please sign the petition in the post by AJs Dad.

I also thank you for writing, even the little article you did. Awareness and funding is unbelievably short for childhood cancer research. My 14 yr old son AJ left us in Jan 2008, a victim of childhood cancer. He had always been healthy, athletic, happy. Now, I am dedicated to do something. Please view and sign the petition to raise awareness and funding at:

http://www.thepetitionsite.com/1/CureChildhoodCancer

AJs Dad

Thank you for writing this article. More awareness needs to be brought to this horrible disease. My son did 3 1/2 years of chemo everyday. He has been off chemo 4 years but still suffers everyday with all the nasty side effets from the chemo. Our children are our future. If we don't find a cure soon that doesn't have all the side effects we will have no future.

Staci
http://www.beadsofhope.com