Tonight's picture was taken in April of 2004. This picture absolutely cracks me up because it shows Mattie at his best. He was the ultimate multitasker. As you can see he was in pajamas, and yet was waving a flag, drinking milk, and who knows what he was doing with a baseball hat on his head! He was a busy fellow who required two things at all times, regardless of where we were. The first was activity and stimulation and the second was a sippy cup of milk. Literally he and I never traveled anywhere without a little cooler filled with milk. I learned that lesson quickly with Mattie. I only had to forget the cooler once, to realize there was no way I was leaving the house without provisions.
Quote of the day: I answer, there is nothing in this world which has no heart, which is incapable of feeling joy or grief, Only you must have the eye to see, the ear to listen, the heart to respond. ~ Sri Sathya Sai Baba
I began my morning by reading a message from Karen. Karen is the mom I met through email, who also lost her son to Osteosarcoma. Today she posted on Keaton's (her son) website a message Keaton wrote about how he felt while undergoing chemotherapy. His message was vivid and well written. It helped me understand how Mattie must have been feeling, and yet was unable to really verbalize these pains, fears, and side effects to me. After all, how many 6 year olds understand nausea and delusions from pain medications? Keaton's voice was loud and clear through his essay. His essay made me pause, because I realized I never knew from verbal reports how Mattie was feeling. As his mom, I understood behaviors and his actions, but it saddens me to know deep down that Mattie suffered in the same way Keaton did. Keaton's message helped me to see that. While Mattie was undergoing chemotherapy, I was managing all sorts of issues and crises on a minute by minute basis. On some level I tried to help Mattie through each and every hurdle, yet now when I sit back and think about what he truly endured, I can only say that Mattie was remarkable. Most of us would have given up living altogether trying to cope with just one of his issues. But when you add up this surgeries, his chemotherapy, his radiation, his psychological side effects from treatment, and not to mention the constant and intense pain from cancer in his bones and throughout his body, it leaves you speechless and in awe. Mattie was remarkable, handled so much, and yet found the energy to want to play and to want Peter and I close to share in his love. Needless to say, this was a very powerful revelation to start the day with.
Peter and I attended CuresSearch's Advocacy Training today. It was a half day event which will be followed by visits to Capitol Hill tomorrow to lobby on four issues in particular. For those of you unfamiliar with CureSearch, they are a national non-profit foundation which funds the lifesaving research of the Children's Oncology Group (COG). The COG is the world's largest, cooperative children's cancer research entity. It is comprised of over 210 member hospitals worldwide, 6500 physicians, nurses, and researchers.
While nearly 13,500 children and adolescents are diagnosed with cancer each year, there are many different kinds of children's cancer. When divided into the specific cancer types, the number of children with each is relatively small. In research, large numbers of patients are critical to ensuring that study results are meaningful. By enrolling patients from many hospitals in the same trial, the results become statistically significant. This approach is called collaborative research and is how the COG functions. You should ALSO note that unlike adult cancers, enrollment in clinical trials is standard practice for children with cancer. Perhaps because the last NEW FDA approved cancer drug came out over 20 years ago and this drug can only be used for leukemia.
Peter and I heard from the following professionals today:
1) John Lehr, President and CEO of CureSearch
2) Chuck Todd, NBC White House Correspondent
3) Gavin Lindberg, VP of Legislative Affairs of Health and Medicine Counsel of Washington
4) Dr. Peter Adamson, Chair of the COG
5) Laura Bunten, from Congressman McCaul's office
6) Ray Thorn, from Congressman Van Hollen's office
7) Nancy Goodman, Founder of Kids V Cancer
8) Susan Weiner, Founder of Children's Cause for Cancer Advocacy
I must admit for the longest time I have been quite confused over the relationship among CureSearch, the COG, and NIH. Things became clearer to me today. For the fiscal year 2011, the proposed budget for the National Institutes of Health is $31 billion and the proposed budget for the National Cancer Institute (one of the 27 institutes of NIH) is $5.1 billion. Out of this $5.1 billion that the National Cancer Institute (NCI) receives, only $200 million is devoted to researching pediatric cancer. One step further, out of this $200 million, $41 million goes to CureSearch, who then funds the COG. Is your head spinning yet???!!! No wonder why it took me over a year to get this straight. It does explain in my mind why these entities are so intertwined with each other, because without NCI's funding, the majority of funding getting funneled to the COG for clinical trials would be NON-existent.
There was one participant who stood up today and in my mind asked a brilliant question. She said this was her first time attending a CureSearch event and wanted to know if it made sense to not only lobby and advocate on Capitol Hill but perhaps also with the NCI? I was impressed with this woman because in just one session she could see that there is something in this equation that makes NO sense. How can NCI be giving billions of dollars each year, and only a small amount be allocated for pediatric cancer. It seems like we need to understand how to change that, and I couldn't agree with her more.
Dr. Adamson, the chair of the COG, gave a beautiful greeting today. He strikes me as an intelligent and compassionate doctor, who really wants to enlighten us or call us to action. He explained that all pediatric cancer drugs used today arose from the 1950s, 1960s, and 1970s. He says that the only thing that has changed over the years is the actual amount of chemotherapy drugs we give children. He said the amounts or dosages are actually at toxic levels. Which is why 80% of children in treatment experience toxicity and severe consequences. He also went on to say that this would never be allowed in the adult cancer world. Adult treatment doesn't send the patient into toxic shock. When you think about how we are poisoning our children as we try to heal them, it is down right frightening. No wonder a majority of children with cancer who survive have devastating long term effects. How could they not when their developing bodies are being exposed to toxins, toxins that have only been researched on an adult body!
Later in the afternoon, there was an advocacy training piece offered by a company called Soapbox. The trainer was full of energy and had quite a sense of humor. Under most circumstances, I would have probably found his style at least entertaining. However, as a mom who lost a child to cancer, sitting and watching him not only infuriated me, but made me very upset. He did a mock congressional visit up on the stage with three participants. During the mock session, two participants landed up crying because they were reliving the fact that their children died. Naturally this comedian/trainer did not process this well, and certainly did not help his audience handle this. Hearing these stories up on stage effected us greatly, I know I landed up crying, and yet he brushed over that, gave us NO strategies for what happens when tears come and you are talking before a group of people and congressional staff. My overall reaction was..... this man has no idea who he is talking to and how is demeanor was perceived.
Tomorrow, I am headed to the visit the following offices, so it shall be another busy day: 1) Sen Mark Warner; 2) Sen Jim Webb; 3) Rep James Moran; and 4) Rep Chris Van Hollen. I would like to note that the highlight for us today was seeing Ray Thorn, Rep Van Hollen's Legislative Director. Ray announced to all the attendees the exciting work the Mattie Miracle Cancer Foundation is doing on the Hill to increase awareness of the psychosocial needs and services for children with cancer and their families. We appreciate Ray's efforts, support, and acknowledgments.
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