Tonight's picture was taken in June of 2003. Mattie was over a year old and very curious. We took him to Great Falls, VA., and Mattie wanted to touch and explore his surroundings, as is evident in this picture! In fact, if he could have sprung out of Peter's arms he would have in order to grab a leaf, except Mattie wasn't walking yet. Even when Mattie was unable to walk or talk, he had an excellent way of getting his needs met ALWAYS.
Poem of the day: Father's Day 2010 by Charlie Brown
What do I do
What can I say
This is the first Father's day
Since you went away.
I see the children
And all their fun
Going through cards
To pick the right "one"
I thought my heart broken
But it breaks again
When I compare life
Between now and then
Celebrations and laughter
Kisses and hugs
Building legos with Dad
Or hunting for bugs
That's not this year
But Dad has your gift
A memory of you
Helps span the rift
Though you're not with us
You are in my heart
And through memories and love
We will never be apart
I spent a good portion of today at the CureSearch, Reach the Day event on Capitol Hill. When I got there, I met up with our friend Tamra. Tamra officially introduced Peter and I to staff members of CureSearch last year. Tamra and I had an opportunity to connect for a few minutes today before the event got started and I was telling her I was having a rough couple of days, with tears in my eyes. So I began the event on shaky ground and unfortunately the day did not get any better. It is very hard to be surrounded for the most part, by fellow parents who also struggled with cancer, but their child survived. Naturally I am thrilled their children are alive and attending the event, but it is a bittersweet reminder to me of what I actually lost. In fact, I was a bit surprised to be surrounded by children at such a training event. I understand the sentiment of why children are there, since this is about children but it just caught me off guard. Especially when the little boy behind me was screaming for his mom, literally I heard him saying, "I WANT MY MOMMY." It was a line I was all too familiar with, and therefore got lost in thought after hearing it.
I attended all the sessions today, and even got to see one of Mattie's doctors, Dr. Jeff Toretsky, give a brief overview of his targeted therapy research. For my long term blog readers, you may recall some of the issues I had to contend with when Jeff was managing Mattie's case. Despite my feelings, I listened to him objectively today, and I could see why he appealed to the audience. He makes information digestible, humorous, and yet interesting. So I can appreciate his work as a researcher, and was also happy that he acknowledged his team of doctoral and post-doctoral students working hard within his lab. Jeff came over to greet me when he arrived and hugged me when he left. I believe in all reality he wanted what was best for Mattie, but our styles were simply different.
Today's training session was to give the attendees some information about CureSearch as well as highlight the major issue we will be lobbying on tomorrow on the Hill. Here is some information on Curesearch that you may find of interest: "CureSearch funds the lifesaving, collaborative research of the Children's Oncology Group, the world's largest, cooperative pediatric cancer research organization, essentially a cancer center without wall. CureSearch manages a grant from the National Cancer Institute and distributes the funds, along with private philanthropic and non-governmental funds, to the more than 230 Children's Oncology Group member institutions in North America and around the world to support clinical trials. The Children's Oncology Group treats 90% of children with cancer in the United States, providing the unmatched combination of global expertise and local care."
The Children's Oncology Group (COG) "receives its primary research funding from the National Cancer Institute (NCI; NCI is one of the 27 institutes that comprise the National Institutes of Health). When the COG was established in 2002, the NCI estimated it would need $55.7 million per year to fund research and clinical trials.The COG has never received that level of funding from the NCI. The funding from the NCI for research and clinical trials support is not only insufficient, but also has remained flat for almost a decade (it has in fact decreased when adjusted for biomedical inflation). Due to funding shortfalls from NCI, the COG must, on an ongoing basis, evaluate studies to decide which studies to open and which will have to wait or never open."
We are lobbying for the full funding ($30 million/per year, over 5 years) for fiscal year 2011 of the Caroline Pryce Walker Conquer Childhood Cancer Act. As you may know, "The Caroline Pryce Walker Conquer Childhood Cancer Act is named in honor and memory of Former Representative Deborah Pryce's daughter, Caroline, who passed away in 1999 at the age of nine from Neuroblastoma. This authorization bill enjoyed bipartisan support, passing the House unanimously 416-0, and passing the Senate by unanimous consent. The House Appropriations Committee included $10 million for this authorization in the House-Passed FY10 Labor-HHS Appropriations Act, however, only 4 million was included in the consolidated appropriations act."
So in essence the bill was signed into law in 2008, however, it is up to Congress each year to determine how much it will actually appropriate to the bill. Sadly in 2009, only $4 million (of the proposed $30 million) was given to the Caroline Pryce Walker Conquer Childhood Cancer Act. The act has three components to it: 1) to enhance, expand, and intensity pediatric cancer research, 2) to enhance and expand infrastructure to track and locate patients to facilitate study of the epidemiology of pediatric cancer through a nationwide registry of actual occurrences of pediatric cancer, and 3) to provide informational services to patients and families affected by childhood cancer. The message given to congressional staff tomorrow will be that research cures childhood cancer. However, such cures are in jeopardy because funding has declined for pediatric cancer clinical trials over the past six year. Therefore, it is imperative that the Caroline Pryce Walker Conquer Childhood Cancer act be fully funded so that children have a fighting chance against these deadly diseases.
In summary, if this Act is passed, then Congress would mandate that the NCI allocate $30million to pediatric cancer research. CureSearch would then apply for and manage this large grant, whose funds would then be distributed to the 230 Children's Oncology Group member institutions (remember the COG is responsible for clinical trials, of which 90% of children in treatment participate in). If it sounds convoluted, it is! It took me over an hour to put these pieces of the equation together.
Facts to remember:
1) Cancer is the #1 cause of death by disease in children
2) Nearly 13,500 children and adolescents are diagnosed with cancer each year
3) 1 child out of 5 who is diagnosed with cancer dies
4) 3 out of 5 children who survive cancer suffer devastating, long-term side effects
5) more than 40,000 children are undergoing treatment for cancer each year
6) there are more than 350,000 children's cancer survivors in the U.S.
Later on in the day, Peter and I had the opportunity to meet and chat with the CEO of CureSearch, John Lehr. John is new to CureSearch, but it sounds like while he was at the Cystic Fibrosis Foundation, he raised incredible private funds, and he has many good ideas to try to unify the pediatric cancer community.
Peter was contacted today by the Washington Post staff reporter, Rick Rojas. Rick did an article on Mattie last year in the Washington Post. Rick will be following us and three other families around Capitol Hill tomorrow to hear about our stories and learn about our lobbying efforts.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I'm so glad Peter is home safe and sound. His trip gives you some wonderful things to talk about and share and that's great. I know that yesterday was bittersweet for you both; your first Father's Day without your boy. Your gifts were well thought out and well received. I hope that as time goes on, the pain recedes while the memories remain. I've heard about the Reach for the Day event but don't know much about it so thank you for including the link and I know you will keep us posted with a personal view of what is transpiring. As I practice today, I send my energy to you to help you as you participate in this event. I hold you gently in my thoughts."
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