Tonight's picture taken on August 9 of 2009. Mattie was in the Lego store of our local mall. The unique part about this was it was after hours and the store was closed. The store was open just for Mattie. He had the WHOLE store to himself. This special gift was arranged for him by his child life specialist, Linda. Linda knew how much Mattie loved Legos and during this visit Mattie got to work with two Lego master builders. They were wonderful with him. Mattie could have built anything he wanted to within the entire store! However, he decided he wanted to build a NYC taxi (something he experienced riding in while being treated at Memorial Sloan Kettering). Mattie elected not to build something from a kit. The reality was Mattie probably had constructed every Lego kit in the store that year, while battling cancer in the hospital. The master builders had no problem designing a taxi scheme! You can see the finished product in this photo! This taxi is in our living room on a display shelf that features many of Mattie's things that were important to him!
Quote of the day: Writing is hard. That's why so few people stick to it and actually finish things. And why you have a right to be immensely proud when you finish something. ~ Andy Ihnatko
I began my day bright and early. I had a lot of administrative work to do for the Foundation before I could proceed to work on the book chapter. I have less than a week to complete this chapter and therefore, am trying diligently to get it done. The chapter is only 40 pages in length, which is really not long in reality, but writing something meaningful to an audience of physicians I think is complex. Especially when the topic has to do with psychological issues. I knew back in my graduate school days that mental health issues sometimes lie at the bottom of the totem pole (in comparison to medicine). So when Mattie entered the hospital the frustrations I experienced with psychosocial care were not necessarily novel to me. Yet as his parent my world stopped and I guess I expected everyone else's to come to a grinding halt as well!
Fortunately with regard to this book chapter, I had the where with all, to ask two of our psycho-oncology team leads for the Foundation to work on this chapter with me. They have been instrumental to me! They have read, re-read my work, edited my work numerous times, given me feedback and have written a portion of the chapter. I couldn't have done this without them and they have made the chapter stronger and ready for prime time.... a medical audience! I feel this will be a wonderful published piece for the Foundation when it comes out in the spring! I have been working on this chapter since June! I would say over the last two months, I have combed through the research and have gained an understanding for the psychosocial literature that I did not have before. Someone could have done this for me and perhaps I could have even read someone else's literature review. But there is something to be said for doing the work yourself! I know what is out there, what isn't out there, what exists in the research, and what is missing! The only way I could truly know this is to have done the painstaking work for myself.
In the midst of writing today, our Foundation's psychosocial team was also having email chats back and forth about our National Psychosocial Standard of Care. It is true I am not a psycho-oncologist, yet I am able to share my own thoughts and insights about care because of the journey we had with Mattie. As I always say, Mattie was my greatest teacher, and I try to always give voice to his experiences in all the work that I do.
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