WOW – I can’t believe I haven’t had to update this page since Christmas. Incredible feat for our family and I couldn’t be happier. This update has nothing to do with any check ups or scans or anything else that makes us have long days at Duke. Get this. Zach. Is. Turning. 4. (April 11th to be exact!). This is HUGE! For Zach, for me, hell…for the whole family! Our whole family was part of Zach’s treatment and without them; we would have come out of this looking a lot rougher than we did.
I’m in awe of how fast time has flown and the satisfying fact that we are celebrating his 4th birthday is not lost on me. I go through this each year since his 1st birthday was ruined (in my eyes) by cancer and chemo. I would love to have a huge tail party with a pig and the whole nine yards, but I just started work again and can’t swing that just yet. Maybe later. This Saturday there will be a T-rex cake, ice cream and hot dogs…and Zach will be happy. And that is all I can ask for.
A couple of weeks ago Zach, Mama and I went to DC to bring awareness to childhood cancer and speak to Congressional members from our state about maintain funding for fiscal year 2011 and increase it for 2012, co-sponsoring both the Creating Hope and Survivorship Acts, and joining the Congressional Pediatric Cancer Caucus. We made an impact. At this point in time, I’ve gotten written confirmation that Congressman G.K. Butterfield has signed on to maintain funding for this year and give 32 billion to the National Institute of Health (NIH). He has also joined the Survivorship Act, which will conduct research on survivors and all the nasty side effects that come later in life from our kids being treated with adult cancer drugs.
Let me break this down for you, because until I was in DC receiving my training, I didn’t know this stuff. The NIH will spread that money out to different groups such as the National Cancer Institute (NCI). The NCI then doles out different amounts of money to different cancer types. For next year we are hoping for more than the 4% we have currently. This money is spent doing research and other stuff “they” deem necessary. Still not sure who “they” actually are.
I am thrilled that we were able to go and advocate on behalf of our kids. And people with cancer in general – kids and adults. Cancer is spreading like the wildfires that have started this Spring and it shows no signs of slowing down. The best way to slow the fire down, or completely stop it, is to do research. We need research. Simple concept. Let’s get it through our Senators and Congressmen’s heads that cancer research is not as they called it, discretionary spending.
You can help spread this message right now, from the comfort of your desk chair. Look up your Senator and Congressional members for your state/district and email them. Tell them your personal story of how cancer has affected you and your life and then tell them to do the following:
Hope this didn’t sound too preachy, but I want everyone to know exactly what they can do to make a difference. So now you know.
- Maintain funding for fiscal year 2011 and increase it for 2012
- Co-sponsor both the Creating Hope and Survivorship Acts
- Join the Congressional Pediatric Cancer Caucus (if they are not Senators! Senators are not allowed to join caucuses).
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