Holly Takes on Washington

Holly Schwab is mom to Zach, neuroblastoma survivor. She runs Zach's Toy Chest, which provides new toys to kids in the hospital. This year, Holly and Zach stormed Washington. You can follow her family at Holly's World.

So I decided to take Zach to Washington DC for our first Childhood Cancer Awareness and Advocacy Day last week. Boy did I underestimate what I was in for. First off I was completely caught off guard with my emotions when I arrived at the information session on Wednesday. For some reason I thought the group of parents participating would have their kids with them - I was wrong.

Our family seemed to be in the minority because Zach had survived his battle with cancer. Good thing I had packed my tissues, because after listening to several speakers talk about their kids who had passed and why they were doing what they do now, it was tough to hear. Then I thought about what a wuss I was sitting there crying when I still had my kid 3 doors down playing with the 1 or 2 other small survivors that had come to DC. It was time for me to suck it up and pay attention to the detailed statistics the speakers were telling us.

Stats such as pediatric cancer research being considered a "discretionary program". Say what? Since when did finding a cure for cancer become optional? Maybe if their kids had cancer they would see it differently - but that isn't something I'd wish on my worst enemy(if I had one).

We reviewed 4 main reasons as to why we were in Washington:

1. To ask our Senators and Congressional members to maintain funding or fiscal year 2011 and to increase funding in 2012. We asked this because each year 13,500 kids are told they have cancer and more than 40,000 kids undergo treatment for cancer each year. There are more scary facts that we laid out to our representatives too. The impact of not maintaining for 2011 and increasing for 2012 is that kids with cancer will not have the best treatment options and will suffer from the lack of research.

2. For our Congress members to join the Congressional Pediatric Cancer Caucus and be a Congressional champion for legislation benefiting children with cancer. All Congressional members need to be part of this caucus since it is bipartisan, creates awareness and educates our members. If we as parents to a child with cancer didn't know this information, how do we expect Congress to - unless we tell them?

3. We need Congress to cosponsor the Creating Hope Act to encourage drug development for pediatric cancers and other rare pediatric diseases. This legislation has bipartisan support and does not require an appropriation. This Act was introduced the morning we hit Capital Hill and there was no better timing. This Act doesn't require any money from taxpayers - at all! What it does do is generate market incentive for drug development through a "golden ticket" - a priority review voucher for pediatric rare diseases. Under this program, a company that develops a drug for pediatric cancer and receives FDA approval for that drug also receives a voucher. That voucher comes with rights to a faster FDA approval for any other drug (like another heartburn or allergy medication), which results in the drug getting to market 4 months earlier. These vouchers are worth hundreds of millions of dollars...I think that may be the incentive these drug companies need to help our kids. Whatever works people! I happen to think this is an ingenious idea and wish I'd thought of it myself.

4. We also asked for Congress to cosponsor and adopt the "Childhood Survivorship Research and Quality of Life Act" formerly HR2109, which is scheduled to be re-introduced later this year. This one is a biggie because now that Zach has survived childhood cancer, he faces many late side effects. 3 out of 5 kids who survive cancer suffer horrible late effects such as secondary cancers, muscular difficulties, infertility, heart failure, kidney damage, hearing loss, memory loss, permanent low immune systems, develop autoimmune diseases and a host of many, many more. As a direct result of research done up to this point, we've got loads of kids surviving each day. This means we need research done to help the survivors. Right now we're at a standstill - I've survived cancer...now what? We need to figure out "what" and allow our kids to grow old and change our diapers when we're as old as...I don't want to think about what that age might be.

Thursday morning came and as I found myself to be nervous...no time for that - got to get my big girl panties on and get this show on the road! We rush to get to the hotel in time to make the shuttle (which we make only by seconds and have to ask them to hold it while I go park and run through the parking garage like a mad woman with an empty stroller. Zach and Mama got put out on the curb so they wouldn't break a sweat.) We arrive at Capitol Hill and start our hike to the first meeting of the day. We heard a 12 year old boy do a speech about how he survived cancer 2 years earlier and was here to help us sway our Representatives to see our point of view. This kid was amazing. No other words.

We move on to our first Senator meeting with Richard Burr's office. This meeting was so weird. It didn't really seem to have a 'start'. The aid we met with, Jennifer Nardi, met us and just sort of looked at me to begin...and I choked. Had no idea where to start. Where was that lady in our group who said she'd start and end for us in the meetings? She was late, that's where she was. I managed to get through a jumbled start and thankfully another set of parents picked up the message for me and we were able to get all our points on the table. I got the impression Jennifer Nardi was not interested in our group or our message. However, we made her sit there and listen anyway. The other family in the pic is Christy Griffith, Eve and husband Matt. Eve had a different cancer and was treated with the same chemo drugs as Zach, as was a older survivor of leukemia (29 years survived!)...see the need for more research yet?

Then we were off to a good lunch of chicken strips, fries and cheese pizza. Those were some good chicken strips - worth all that walking back and forth all day! We went to Congressman G.K.Butterfield next and met with his aid, Meredith Morgan. She was full of energy and I felt like we really had her attention in this meeting. She took notes and even asked questions we were able to answer. Made me feel a bit smarter up on the Hill.

*Update* Meredith sent an email letting me know Congressman Butterfield was on our side.

'I really enjoyed meeting you all today. Thank you for taking the time to come all the way up to DC.

I passed the information on to Tonya, our chief of staff, regarding what we discussed and she is going to review it tonight. Also, I read your children’s stories and I am so sorry. I can only imagine how difficult that is to go through for everyone involved.

I know our office is behind funding the best cure for pediatric cancer. The one piece of news I already have is that we are in support of funding NIH at the current level. We just signed a letter today in support of funding NIH at $32 billion (the President’s proposed FY 2011 was at 32 billion but as I am sure you know ,there has been no final vote for FY2011 by congress. FY2010 for the NIG was 31 billion) .

Please know that our door is always open.'

I have since written her back reiterating our message and thanking her for the support.

After this meeting, we had some time to kill so we took our time getting to Senator Kay Hagan's office. I took some random pictures during this walk...

What's the 1st thing you notice in this picture??? We were lucky enough to be stopped twice that day for the President coming and going down the street...whoever this guy stops wouldn't be what I call lucky.

I really took notice of all these damn stairs around Capitol Hill...maybe it was because I had a kid in a stroller to lug around all day...what do handicapped people do here? I finally found a ramp at one building at guess what...it lead me to the base of some steps.

This certainly explains a lot about people in Washington...

Zach's new friend and partner in crime, Eve.

So we arrive at our last meeting of the day, Kay Hagan's office, and we're prepared to deliver our message to Senator Hagan...but she is a no show (she had to run home to NC). We ended up meeting with a competent aid named, Tracy Zvenyach - who is also a nurse and had a great working knowledge of what we were talking about. Another Mom that was there brought an email from Senator Hagan's office to attention and promptly told the aid that the letter was wrong - all the info Senator Hagan wrote about was for adult cancer - not childhood cancer. We hope the Senator has been informed of the error and will now cosponsor our Acts so she'll be more informed in the future.

We were very fortunate to have an adult survivor of leukemia. She has survived 29 years and actually had been treated with the same drug Zach was, as well as Eve - and they all had different types of cancer. She shed TONS of light on why research is needed for the survivors too.

The kids were wild by 5pm. This poor girl looks like she was ready to make a break for it when we left! At the end of the day I think we really made an impact on Capitol Hill - for better or worse, we made one. I ask that each and every one of you write to your representatives and ask them to maintain the budget for the rest of this year and to increase it for next year. We need the research. Simple as that. I'll update about responses I receive as they (hopefully) come in. Thanks for your support and encouragement. We need it!