Tonight's picture was taken in June of 2009, right after Mattie's sternotomy. Though I try not to show Mattie in compromising positions with tubes hanging out of him, to me this picture is peaceful. Mattie was finally comfortable and fell asleep and was able to rest. Notice who was on the chair with him, YES SPONGE BOB, dressed as a pirate. My all time favorite character (I am JOKING!!!). After Mattie's sternotomy, I will never forget that Team Mattie filled a treasure chest with toys, and delivered it to the hospital. These toys were used as incentives to get Mattie up from surgery, to get him to exercise his lungs, and to cheer him up. This treasure chest was very symbolic to us and I actually kept it a long time after Mattie's death. Until April of 2010, when I returned it to Linda at the Hospital. The chest symbolized Mattie's community, it symbolized the love and support we had, and it symbolized a time in our life where we thought we had removed all tumors from Mattie's body. This pirate Sponge Bob was one of the wonderful gifts that Mattie found when he opened up the chest. Needless to say, I still have this stuffed animal in Mattie's room today.
Quote of the day: Needed: A strong, deep person wise enough to allow me to grieve in the depth of who I am, and strong enough to hear my pain without turning away. I need someone who believes that the sun will rise again, but who does not fear my darkness. Someone who can point out the rocks in my way without making me a child by carrying me. Someone who can stand in thunder and watch the lightning, and believe in a rainbow. ~ Joe Mahoney
Today was emotionally draining. More so than I would have imagined it to be. Peter and I began our day with a breakfast on Capitol Hill. Thanks to Rep. Sestak's office and CureSearch, we were invited to a breakfast and the opportunity to attend the Pediatric Cancer Caucus' Panel Discussion. At the breakfast, we had the opportunity to chat with key staff members from Rep. Sestak's office and Rep. Van Hollen's office. We had met both of these wonderful individuals at CureSearch's Day on the Hill event in June, and it was lovely to reconnect with them. We also had the opportunity to meet several other individuals who are doing wonderful work to help families stricken by cancer. In particular, I met the executive director of a Childhood Brain Tumor Foundation, based in New York. This gentleman was warm and sensitive, and wanted to hear more about Mattie. He acknowledged how challenging it must have been for Peter and I to attend this event, and simply stated, he just understood, though he hadn't lost a child of his own.
The mission of the bipartisan Pediatric Cancer Caucus is to serve as a clearinghouse for information on pediatric cancer and a forum to aid Members of Congress in working together to address pediatric cancer. The Caucus strives to raise awareness about pediatric cancer, advocate in support of measures to prevent the pain, suffering and long-term effects of childhood cancers, and works toward the goal of eliminating cancer as a threat to all children. The Caucus is chaired by Representative Joe Sestak and Representative Michael McCaul and was launched in June of 2009 to better direct Congressional resources and efforts to the cause of preventing pediatric cancer.
There were three panel discussions this morning that ran for about two hours. We heard from several politicians connected to the Caucus, as well as several distinguished members of the oncology community such as Dr. Peter Adamson (Chair-elect of the Children's Oncology Group), Dr. Susan Blaney (Deputy Director at Texas Children's Cancer Center), Dr. William Evans (Director and CEO of St. Jude Children's Research Hospital), Dr. Melissa Hudson (Director of the Cancer Survivorship Division of St. Jude), Dr. Eugenie Kleinerman (Head of Pediatrics at MD Anderson Cancer Center), Dr. Kevin Oeffinger (Director of Adult long term follow up program at Sloan-Kettering), and Dr. Susan Weiner (Founder and President of the Children's Cause for Cancer Advocacy). Below you will find some interesting facts we learned and some of the pictures Peter was able to capture from the event.
We learned from Dr. Evans that St. Jude is involved in a $60 million pediatric cancer genome project, which is desperately needed for targeted therapies. Specifically, "St. Jude Children’s Research Hospital and Washington University School of Medicine in St. Louis recently embarked on the largest initiative to date aimed at understanding the genetic origins of childhood cancer.The team is joining forces to decode the genomes of more than 600 childhood cancer patients who have contributed tumor samples throughout the years. Scientists in the St. Jude Children’s Research Hospital –Washington University Pediatric Cancer Genome Project will sequence the entire genomes of both normal and cancer cells from each patient, comparing differences in the DNA to identify genetic mistakes that lead to cancer." http://www.stjude.org/SJFile/GenomeProm.pdf
We heard from Rep. Chris Van Hollen (D-MD) this morning. He is a Caucus member and one of the original co-sponsors of the Carolyn Walker Pryce Conquer Childhood Cancer Act.
In June 12, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation saluted the United States House of Representatives for passage of H.R. 1553, the “Caroline Pryce Walker Conquer Childhood Cancer Act,” which promises to significantly increase federal investment into childhood cancer research. During markup of the legislation, the bill was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to neuroblastoma in 1999 at age nine. The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatments and research for children with cancer and their families.
Caucus, and also introduced the
Childhood Cancer Survivorship Research and Quality of Life Act of 2009. The bill, also known as the Childhood Cancer Survivorship Act, would lead to improved health for the growing number of survivors of childhood cancers by improving and expanding the delivery of medical and psychosocial care to survivors of childhood cancer.
You should note that at least 50% of children who do survive cancer are left with significant long term side effects, which could mean things like diabetes, heart disease, sterility, mental health issues, and the development of secondary cancers (as a result of toxic treatments)!
Many of the panelists today discussed what congress could do to support the pediatric cancer battle. Particularly by supporting three forms of legislation. However, here is the sad part of all of this. There is NO economic incentive for pharmaceutical companies to invest the time and dollars to creating drugs to combat pediatric cancers. Why? Because in the grand scheme of things, only 1% of the cancer market applies to children. In comparison to adult cancers, childhood cancers are ALL orphan diseases. Think about it this way, there are about 12 million adult cancer survivors in the US, whereas only 328,000 childhood cancer survivors. It is a numbers game, and there is NO profit to designing drugs to treat children. It seems hard to swallow to hear this rationale, especially if you are a parent with a child who has cancer. It is even harder not to jump out of my chair and throttle someone knowing that Mattie died because in all reality it isn't economically profitable to study osteosarcoma and develop better drugs to combat this nightmare. Also note that many pharmaceutical companies were invited to this event today and NONE of them attended. I am not sure how these people live with their decisions each day, and I just hope that none of them are personally affected by pediatric cancer, because I would think it would be a bitter pill to swallow knowing that their own decisions prevented their own children from having the chance to survive cancer.
Three forms of legislation that the panels asked to be supported today:
On January 4, 2002, President Bush signed the Best Pharmaceuticals for Children Act (BPCA) to establish a process for studying on-patent and off-patent drugs for use in pediatric populations, and to improve pediatric therapeutics through collaboration on scientific investigation, clinical study design, weight of evidence, and ethical and labeling issues. http://bpca.nichd.nih.gov/about/index.cfm
On December 3, 2003 the Pediatric Research Equity Act of 2003 (the "Act" or "PREA") was signed into law. The Act essentially codifies the Food and Drug Administration's so-called "Pediatric Rule," which became effective April 1, 1999, but was invalidated in October 2002 by a D.C. federal district court as exceeding FDA's statutory authority. Under PREA, sponsors submitting a new drug application ("NDA"), biological license application ("BLA"), or supplemental applications on or after April 1, 1999 must include "assessments" of safety and efficacy for all relevant pediatric populations for "claimed" indications. PREA also allows FDA to require pediatric assessments for already marketed drugs in certain circumstances. http://www.hoganlovells.com/files/Publication/2dafec52-5ce4-4ed0-add7-21281473730b/Presentation/PublicationAttachment/6c2869ed-d9d5-4b2c-ac63-df4e3047b68b/791_FDA_Update_REA_031223.pdf
The Creating Hope Act of 2010 will encourage the creation of new drugs for underserved children who suffer from serious and rare medical conditions, including life-threatening cancer, by providing a voucher to pharmaceutical companies who develop such drugs. This voucher would be used for any other drug -- particularly a blockbuster drug -- to receive FDA expedited approval, which would allow that drug to be delivered to market faster. The voucher would constitute a strong, market incentive for pharmaceutical companies to develop drugs for children with serious and rare diseases, such as cancer. The Act builds on the "FDA Amendments Act of 2007," which established a voucher for drug development for neglected tropical diseases. http://www.fiercebiotech.com/press-releases/kids-v-cancer-supports-creating-hope-act-2010
When I got home from today's event, I was thoroughly worn out. I am not sure why, but I do think that the content discussed is so emotionally laden for me, that some times it is hard to internalize it at times. I came home and Peter and I spent some time together before he headed back to doing work. I literally had to shut down for 90 minutes today, because I wasn't functioning well. This evening, Peter and I went out to dinner with Dr. Aziza Shad and Tim Mooney, associate administrator for the Department of Pediatrics at Georgetown University Hospital. As some of you may recall, I recently met Tim at the Hyundai Hope on Wheels event at Georgetown. We instantly clicked and it was so nice of him to plan this dinner for us tonight. We had a wonderful time connecting and getting to know each other better. Tim's life has also been affected by cancer, and we share mutual admiration for one another. Tim is a blog reader, and reminds me how powerful the blog really is and is advocating for me to write a book. Tonight's dinner had no agendas, it was about people truly connecting with people, and that was a refreshing and much appreciated concept.
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