Friday, July 17, 2015

Friday, July 17, 2015

Tonight's picture was taken in July of 2009. Mattie was outside on our deck and in his favorite place.... his sandbox. Mattie loved building in the sand and bringing all his toys from inside into the box. He could be very creative with them! Notice the piece of wood incorporated into the box. Mattie loved wood pieces, because he used them as ramps for his hotwheel cars! To this day, when you open up the sandbox, you can still find pieces of wood inside. 


Quote of the day: Blessed are those who give without remembering and take without forgetting. ~ Elizabeth Bibesco

In March, we attended the Institute of Medicine's Comprehensive Cancer Care for Children and Their Families workshop in Washington, DC. At this conference I gave a talk that highlighted a parent perspective of having a child diagnosed with cancer and the impact it had on our lives and why we developed the Foundation. The purpose of the workshop was to bring the top leaders in the Country together to discuss the topic of palliative and psychosocial care and how to comprehensively treat children. Medicines today may prolong lives but in many cases it is the quality of the child's life that comes into question once the treatment ends. Children are left with many long term side effects, some of which can even include secondary cancers. Which is why palliative care (providing patients with relief from the symptoms and stress of a serious illness--not to be confused with hospice or end of life care!!!) and psychosocial care are so crucial, because both help children and their families manage and cope with the day to day stresses associated with the complexities of surviving the treatment. Of course surviving the initial treatment doesn't mean one is cured. Children can relapse, develop other forms of cancer, and of course when this happens this sets everyone in the family for a tailspin. 

In fact, I remember one of Mattie's doctors telling me early on to remove the word cure, from my vocabulary. Because there is no such thing as a cure. Instead she suggested I replace the word cure with "no evidence of disease." Meaning it wasn't measurable or detectable in scans. I think she is quite right. Once cancer has invaded your world, the threat and fear of it always is there. Which is why I feel it is as much a psychological disease as it is a physical one. 

The jacket cover you see above came out today. The actual publication will be released in September in time for national childhood cancer awareness month. However, this book is now being advertised on the National Academies Press website http://www.nap.edu/catalog/21754/comprehensive-cancer-care-for-children-and-their-families-summary-of. If you look closely, you can see Mattie and Peter featured on the cover! We gave the Institute several photos of Mattie and photos of us with Mattie. They selected this one for the cover. There maybe others they included inside the publication. The story behind this photo however was that it was taken on Peter's birthday. Mattie made Peter a cake out of model magic. So the cake you see in the photograph was designed by Mattie. This cake sits on our bureau in our bedroom even today. It is very special to us to know that in such an important publication written by the Institute of Medicine, that Mattie will be featured and memorialized. Also knowing that this publication is coming out in September, during National childhood cancer awareness month and the month Mattie died in is noteworthy.