Caroline Pryce Walker Conquer Childhood Cancer Act of 2008

May 7, 2008

I needed some good news today. Apparently, I violated Scott Finestone's strict instructions (see the Saturday, February 10, 2007 entry on Zach's caringbridge page) for avoiding bad luck and tempting fate because I forgot to say "Kaynahorah" and spit three times (ptuii, ptuii, ptuii) last week when I got off the phone with Dr. Russell. She had phoned to talk about Erin's blood labs and to let me know she had been working on a new road map for Erin that extended her current treatment plan out another three years. Given that optimistic outlook from her doc and the fact that I was feeling confident about Erin's health save for her back (which we were handling through standard channels), I failed to ward off the evil eye (literally and figuratively).

You already know about the eye infection. Well, the virus she has in her eye, or perhaps an independent contractor virus, has set up shop in the rest of her body, giving her an achy back, a stiff neck, a headache, and swollen lymph nodes in her right groin area. For those of you in the know, I'm sure what you have just read is sending up all kinds of red flags. I'm holding tight to the virus theory, but am glad I don't have to wait longer than next Tuesday to take a closer look inside to see if something more nefarious than a kid virus is causing Erin's woes.

On top of Erin feeling punk with the kind of symptoms I don't like to see, we learned this morning that our friend the amazing Hans (shown stage left) has something ugly on the bone scan of his arm that might be relapsed NB. I just get so angry that families all over the country and all over the world have to live with this burden. Tell your son his cancer "booboo" has come back. Tell your daughter the back pain sidelining her from her favorite activity may just be a side effect from cancer treatment, not her cancer grown back, although you can't be certain either way.



The google alert that came in a few minutes ago to my email account brightened my un-cheery disposition. Today, the Conquer Childhood Cancer Act passed successfully through its House Committee with few amendments, the most noticeable one was that it now has a new title: The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. Congresswoman Deborah Pryce is the leading co-sponsor for the bill and the mother of a neuroblastoma angel, Caroline, who died as a nine year old. The bill now has to move to the floor of both the House and the Senate (where it has bi-partisan support and a majority in each chamber already signed on as co-sponsors). If it passes in different versions it would have to be reconciled in conference committee before being sent to President Bush for a signature. I continue to have high hopes.

If the bill becomes law, our next battle would begin: fighting for appropriations to fund the the legislationl. That will be a monumental fight, but for now, let's take the bit of good news. What we are working for has taken another step forward. Knowing that has lightened my load a little today.