Tonight's picture was taken in June of 2007. As I mentioned last night, while driving through Lancaster, PA, we came across a beautiful farm. The farm was very kid friendly and had all sorts of playground type things featured, which we could see from the road! What we did not expect though was this amazing trampoline. This thing was rainbow colored and flat on the grass, not elevated. However, it was great fun for Mattie because he ran all over it and jumped around! The irony is that NO one else was around us. Mattie had the whole trampoline to himself and it was like finding a little nugget of gold in the midst of a field of green.
Quote of the day: If you need something from somebody always give that person a way to hand it to you. ~ Sue Monk Kidd
I had my monthly licensure board meeting today, which always has a way of taking up half or more of my day. Typically my Foundation work and my board work do not interfere with each other. However, one of the licensed professionals who is coming before our board for ethical violations happened to make a contribution to Mattie Miracle in May. I will spare you the details on this! However, fortunately I flagged the contribution and returned the money because of the conflict of interest. I can not try this person for a violation and also accept money at the same time. Needless to say, after dialoguing with my board today, I have decided to recuse myself from this ethical hearing for various reasons. One of my primary reasons is to protect Mattie Miracle, because it only takes one questionable act to cloud an organization's reputation. Funny isn't it how my worlds do collide.
My friend Debbie sent me a link to an article today. I had read this article on Wednesday, but I am happy Debbie sent to me so I can share it on the blog. The article highlights the long term effects of children receiving cancer treatment. A recent study was conducted at St. Jude Children's Research Hospital. Researchers followed a group of 1700 adults who were patients at the Hospital when they were children. All the participants were at least 10 years past their childhood cancer diagnosis. However, more than 95% of these adults now suffer from chronic health conditions such as pulmonary disease, hearing loss, cardiac issues, and the list goes on. One chart from the study fascinated me, because Mattie received the drug, Cisplatin. It was found that almost 100% of adults who received Cisplatin as a child had hearing loss of some kind by age 60! The sad part in all of this is there are only two new FDA approved drugs to treat children with cancer (within the last 20 years), so what does the medical community do instead? They increase the dosages of these antiquated chemotherapies resulting in children being exposed to toxic levels of these drugs. It is no wonder that children who are lucky enough to survive treatment are later afflicted with all sorts of complications and diseases, and yet as the article points out, "there is a paucity of training and doctors to take care of people with these specialized needs." What do you say to this?! It almost leaves you speechless.
Childhood Cancer Health Woes Persist
http://online.wsj.com/article/SB10001424127887324904004578539611296432752.html
Out of the blue today, I received two emails from cancer professionals asking Mattie Miracle to promote their cancer related products. In fact, one researcher is from a well known treatment hospital who would like us to offer her newly patented psychosocial kit to children and their families. Naturally I need to learn more about both of these products before responding, but it seems to me Mattie Miracle is getting the message out there that we are about PSYCHOSOCIAL support and from my perspective this truly makes Mattie's Foundation a very unique cancer organization.
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