Monday, April 28, 2008

Conquer Childhood Cancer Act

Tyler was back getting his blood work this morning. The numbers are not good, so he is now on the way to Children's for more transfusions. He is actually in a lot of pain right now. Cancer does not die easy. But Tyler does not quit easy. It has been a 6 1/2 month battle. Tyler is now starting to have some good days...the entire day. And the best news: he had made it through round 6 without one night in the hospital! Score card: Tyler 6, Cancer-0. As soon as Tyler's counts return, round 7 will begin. Our trips to Boston and MD Anderson were hard on Tyler, but necessary and very helpful. We now have a real game plan to kill this cancer, and make sure it stays dead.

I have posted a few times about the Conquer Childhood Cancer Act. There is a cure for cancer, but it will require a lot more focus on research (in other words, money). The fact is that the kids are largely ignored in the battle against cancer. Even most of the large non-profit organizations focus little attention on childhood cancers. One of the biggest reasons is cost. Although a lot of young people have cancer (30,000-40,000 in the U.S.), there are many different childhood cancers. Not one of them are common. Even ALL, the most "common" of childhood cancers, only has 800 new cases per year. Since each cancer type has fewer cases, fewer kids will benefit from each dollar spent on research (when compared to common adult cancers). But it would seem to me that this fact should demand more money, not less, to go toward childhood cancer research. The Conquer Childhood Cancer Act budgets $30 million in research to save these kids.

Here is an update on the bill from AJ's dad from AJ's Space.

Progress on the Conquer Childhood Cancer Act…

three more Senators signed onto the bill late last week bringing the total co-sponsors to 60. The reason why? The efforts of thousands of childhood cancer advocates across the country who have called, written, emailed, sent letters to the editor, and visited with Senators have made a difference. It's thanks to you! This significant milestone is one more step in the ongoing, uphill climb to get the bill passed, signed into law and funded. All of this talk about forward progress on the Hill in regards to the Conquer Childhood Cancer Act makes me think more about our Reach the Day event June 22-24. Are you signed up to join us? Your voice in Washington, DC, does make a difference!

Here's a link to register/get more information about the event on the CureSearch website:
http://www.curesearch.org/support_curesearch/raise_awareness/index.aspx?id=4450.

Two other things - if you want to see where your representatives stand on the issue:
http://capwiz.com/curesearch/issues/bills

#2 - if you are going to send flowers for Mothers Day - support CureSearch and use this link:
https://giftshop.curesearch.org/

click on the Giftback.com link and 10% of any purchase will go to CureSearch. The giftshop link also has other great gift ideas, all in support of CureSearch.

last one I promise: #3 - I have found another organization. This organization uses a simple concept: instead of parents buying the soccer/softball/whatever sport coach a gift at the end of the year, they donate the money to Curing Kids' Cancer, which is the name of the organization. The money goes to childhood cancer research and in return, the coach or teacher receives an original gift, a certificate and the great feeling of helping kids kick cancer. More information can be found at
http://www.curingkidscancer.org./
You know your kids coach doesn't really need that Chilli's Gift Certificate!

We need all this because its still there. These kids are there every day fighting fear, pain, anger, and the unknown. Thousands of them, each special. I read a report this week in a Med Journal that has now proven what we all know, that these kids deal with cancer better than any adult does. That kids somehow develop internal mechanisms that allow them to be able to maintain at levels we could only dream about when faced with a similar obstacle. Just hope it didn't take more than a day or two on a pediatric cancer floor for the authors to finalize the assessment. Cuz its so d*mn obvious.

5 comments:

Kylee said...

Tyler-

Hey buddy! Your last post reminded me so much of myself and being excited about finally feeling better. I have learned the hard way though that those days don't last forever and there will still be some bumps in the road ahead, (one example for me was my hospital stay this weekend a month after my last chemo). Hang in there! It will all work out :)

Kylee

Anonymous said...

It seems like breast cancer is the cander that gets all the money and attention. Lung cancer is the number one cancer killer but it does not recieve as much funding.
Maybe some Hollywood child star needs to get cancer to put a face with the desease. That sounds horrible, doesnt it?
Thanks for the great ideas to financially motivate us!

Anonymous said...

Kyle - you might be interested in this. It's an idea you've talked about.

Xbox 360 Kiosks Bring Games and Entertainment to Children’s Hospitals

http://tinyurl.com/6ga8w8

deyerles said...

Praying for you guys.

Hugs,
Debbie

Mom said...

Kyle,

We can each do more. That is what Tyler has taught us all. Thank you for your research and making so many so aware.

Conquer Childhood Cancer Act - what a great stride forward.