Tears

Wow... I just found myself with tears streaming down down my cheeks while looking at photos of Max at his kindergarten end-of-year carnival. Here are all the kids running around having a great time - Max included - eating popcorn, doing a cake walk, mining for gold, fishing... and Max is wearing a surgical mask because his counts we're low that day. I dunno. It just struck me as so sad.

Childhood Cancer Act 2007 - HELP

Just posted on ACOR by another parent. You can help; pass it on...

http://www.curesearch.org/support_curesearch/raise_awareness/ See this page for information regarding ways to help raise awareness about childhood cancer and direct links to contact your congressman and senator.

I just called all the Representatives from our neighbor state of SC. I was distressed that most offices, even their healthcare aides, acted like they had never heard of the Conquer Childhood Cancer Act. We need to change that.

It is so easy. Go to www.house.gov to get a list of your representatives by your zipcode (top left of page). It allows you to click on each member to get their webpage which will contain their contact information.

Call their Washington office. Ask if the Congressman plans to co-sponsor the Conquer Childhood Cancer Act of 2007. I told them in a few sentences why it is important, e.g.

"It is vital that Congressman X support the Act because cancer is the number 1 disease killer of children. Current budget cuts have resulted in clinical trials being closed for our children. As the parent of a 4 year-old with stage IV cancer, I strongly urge Congressman X to co-sponsor the Act."

I wrote the following to my rep:

Dear Mr. Bilbray,
I am interested in knowing if you plan to co-sponsor the Conquer Childhood Cancer Act of 2007.
I am a parent of a child with a stage IV recurred cancer that currently has no cure. We believe there is a cure out there - it simply hasn't been tried. Current budget cuts have resulted in clinical trials being closed to our children. We need your help.
As a cancer parent, I strongly urge you to co-sponsor this Act. Thank you.

Survival Rates...?!?!

Augh! Could we please stop talking about survival rates?

Recently there was a parent NB Conference in Chicago. A lot of the parents who post to ACOR attended and were dazzled by different doctors and their respective trials, treatments and ideas. The doctors are continuously bringing up "survival rates" in relation to their studies and the parents just glom onto this crap like its the word of God himself.

Please stop being bamboozled by these doctors! How long do we have to be in this fight against neuroblastoma before we all realize that some kids just luck out become NED? Somehow they were able to defeat the cancer on whatever treatment they were on - just by luck. No ONE treatment works on all the patients. This cancer is elusive and all the doctors have to attest to that. This crap about MSK having a 60% survival rate with one of their studies is just that: crap.

And while I'm going off I may as well mention that I'm sick of hearing about the "Big-4" doctors bad mouthing Dr. Sholler and her studies. It's hard to believe that in the fight to save childrens' lives there are politics, but there are, and these Uber-Docs are threatened by her, her studies, her findings, her commitment to saving lives without ruining quality of life in the process. (They're worried about losing out on more study patients and money.) Did you know that a certain doc applied for a grant through Alex's Lemonade Stand but was denied? Hmmm... who are the doctors doling out the money from that fund? Look it up.

I know there's a cure for NB - it just hasn't been tried yet. The big treatments only work for a few - and there's no rhyme or reason for it.

I have no graceful way to end this rant. But I feel better...