Monday, June 20, 2011

Monday, June 20, 2011

Tonight's picture was taken in June of 2009, during Mattie's "reptile alive" birthday party. My friend, Christine (Campbell's mom) hosted a party for Mattie and his friends at her home. This was Mattie's last birthday party he ever had, a I know he loved it. As you can see Mattie got a chance to touch and interact with many creepy looking things that day.This snake being one of them! Mattie was fascinated and intrigued and the whole day was full of fun for him and memories now for us. In my mind Mattie will always be 7, and yet if  he were alive today, he would be 9 years old. I can't even imagine that, and yet when I look at how his friends are growing, the reality sets in for me.

Quote of the day: Relationships take up energy; letting go of them, psychiatrists theorize, entails mental work. When you lose someone you were close to, you have to reassess your picture of the world and your place in it. The more your identity was wrapped up with the deceased, the more difficult the loss. ~ Meghan O'Rourke

Peter and I had the opportunity to go out to lunch today with a woman who works for a big pediatric cancer association. Since she just started working at that association, we wanted to introduce ourselves to her and talk about ways we can support each other. I try to keep my own personal commentary and insights about other pediatric cancer groups to a minimum. However, during today's conversation I was far more candid. Some people either like and respect my candor, or they don't.

There are thousands of organizations and foundations focused on pediatric cancer, and I suppose when I entered this work, I had the ideal notion that this community would want to network and work with each other to achieve the common goal. Well unfortunately, just like everything else in this world, the world of pediatric cancer is NO different. There are turfdom issues and in some cases people who are very motivated by what a certain achievement will do for them or their organization. Again, there are days I can put this human instinct into context, and then there are moments when this disgusts me. In those moments, I feel the need to pull away from hearing about these people and groups and instead I remain focused on Mattie Miracle and solely what I feel we can do to help children and their families. At the end of the day, I have to see that what we are doing is helping children and their families directly and immediately! The way to help children and their families with cancer is to focus on the here and now, which means their psychological and emotional needs!

So many organizations are focused on raising money to fund pediatric cancer research. This is most definitely needed and valuable, however, as a mother who lost a child to cancer, I am also a realist! In the fiscal year 2011, the proposed appropriations from the federal government to the National Institutes of Health (NIH) is $35 billion. Of which, NIH gave the National Cancer Institute (one of the 27 institutes within the National Institutes of Health) $5.1 billion for cancer research. However, here is the shocking part, out of these BILLIONS, only $ 200 million is dedicated to pediatric cancer research. Also keep in mind that the government is the largest funder of pediatric cancer research, however, each year these funds get cut. Now I realize this might not sound bad at all, until you hear the REALITY of the problem. The reality is our children are treated with cancer drugs from the 1950s, 60s, 70s! The LAST new FDA approved cancer drug for children occurred OVER 20 years ago. The only difference with how children are treated today lies in the quantities of drugs given. Children are given dosages at toxic levels, so much so that 80% of children with cancer experience toxicity and a lifetime of health issues and long term side effects.

I would like to remain hopeful that there will be better pediatric cancer treatments available within my lifetime. But I look at our history in this country and our POOR track record, and realize while we figure out where the money is coming from to create new treatment innovations, while we figure out the technology and the medicine and the COMPLEXITIES OF treating the 12 major different types of pediatric cancer, something must be done NOW. That something is the psychosocial support of children with cancer and helping their families cope with this entire life altering journey.

I learned about this popular video out there now on You Tube today. A cancer organization called, Make Noise 4 Kids, produced this video. The video illustrates using a PIE (yes like the one you eat!) the inequities of funding childhood cancer research. There are aspects of the video that are quite effective, especially when you see the sliver of pie (or money) remaining to conduct research on pediatric cancer. However, there are other aspects of the video that lose me because it seems more like an academic exercise (focused on fractions and PIE)  than on the real life presentation of the problem. I attached the link below, so you could come to your own conclusion!

Make Noise 4 Kids: http://www.youtube.com/watch?v=fjp1es04qgE