Tonight's picture was taken in September of 2008. The computer you see was given to Mattie by his technology teacher (Mary) at school. Mary and Mattie had a special connection. Mary lost her mom to cancer and understood the toll on both the patient and the family and was truly devastated that this was happening to Mattie. Mary was one of the teachers who visited Mattie practically weekly at the hospital. I am not sure she realized what a gift that was for me. It gave me an hour to regroup, while she worked with Mattie. Initially Mary came to work with Mattie on technology issues, but over time she could see that Mattie was stressed and frazzled and therefore used the time together however he wanted. Mary is an amazing person and teacher and the computer she lent to Mattie was greatly appreciated because it helped serve as a distraction on several occasions.
Quote of the day: To be a champ, you have to believe in yourself when nobody else will. ~ Sugar Ray Robinson
Over the last four years Mattie Miracle has worked hard at developing its vision for psychosocial standards of care for children with cancer and their families. Prior to us beating this drum, I am not sure people were really giving the psychological, social, and emotional issues even the time of day on the National level. But, it is a tireless job and one with continuous needs. I am not quite sure people thought we could get as far as we have gotten with the standards. After all, for decades NO EVIDENCE based standards existed, until we said they were needed. But just saying standards are needed isn't enough. In order to have accomplished this monumental task, a competent group of professionals needed to be assembled and the group had to be able to work effectively together and be passionate about this common goal! Yet what working with this group of over 80 health care professionals showed me is that people can collaborate for the greater good. That isn't a lost art, which was very refreshing to see.
The childhood cancer parent advocacy space is filled with many organizations and foundations, many of whom are focused on raising funds for biomedical research and treatment. Of course Mattie Miracle supports and respects this work, but this just isn't our focus or our passion. On the contrary our tag line is..... IT'S NOT JUST ABOUT THE MEDICINE, and we believe that psychosocial care is just as important as the medicine. This isn't just a nice statement, but rather, it is a statement backed up by research and my own personal experiences with Mattie. When psychosocial care was appropriately administered, Mattie seemed happier, complied with treatment and experienced less pain.
Yet, despite the reality of how emotionally impacted children and families are after diagnosis and beyond, the majority of advocates do NOT share our platform. Many cannot look past the medicine. In my perspective the medicine failed us like so many other families, so why wait for the panacea that may never come in our lifetime? After all, children are being treated with medications that are over 50 years old and only three new cancer drugs have been FDA approved in the last 20 years. Rather deplorable! So personally I rather deal with the here and now and how we can help a child and their family today!
What I am observing however, is now that the standards have been published, people are coming out of the wood work because they want to know more. Naturally I am all for sharing information, but unfortunately I also know the dynamics of the non-profit space. Anyone who thinks there is no competition and cut throat behavior within non-profits, doesn't know this space well. The non-profit world can be just as brutal as the for profit world, but what is worse is there is usually an emotional component to the work. People get involved in non-profit work for a reason, typically inspired by personal experiences on some level. We are learning the fine art of sharing and yet at the same time protecting our intellectual baby (the psychosocial standards).
Everything about running a foundation is a learning experience. But it is much more complicated for me, because the Foundation represents Mattie and his legacy. If I deem you messing with the vision or mission of the Foundation, it may be problematic for the recipient, which is why, working with us typically means that we have a personal connection and understanding together. That may sound limited but so far it has been a winning strategy for us and Mattie Miracle.
1 comment:
Vicki,
Excellent blog!!!! Mattie's picture and anything about him adds to my limited knowledge but also my gratefulness that you continue to share the beautiful pictures and stories of Mattie's life!
Yes, there are many Childhood Cancer Organizatins today! When Growing Hope began as a conversation first and a reality in September, 1998, the Board was concerned about the needs of the children and their families beyond the treatment. We knew the kids did not always feel well but with the correct approach and the willingness of parents to bring their kids to a GH event, confirmed what we, as a Board thought. Children in treatment needed worthwhile diversions that energized them even a little during treatment. While, it is only my opinion, I feel certain that the Psychosocial support of Children during treatment for Cancer is as important as the chemotherapy, etc. they receive during treatment. I have almost 20 years experience, working day to day with children/teens who proved that medicine alone was not enough. Hope is my big word, though only 4 letters. I have great Hope that Mattie Miracle will improve the Psychosocial support, children now receive, creating whole new concepts of the meaning of this word and its importance. Margy
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