Tonight's picture was taken on October 1, 2008. A day I will never forget. We took Mattie to NYC to be seen by two doctors at Memorial Sloan Kettering. One doctor was the head of oncology and the other an orthopedic surgeon. What was happening in this photo, was we were waiting for the surgeon to grace us with his presence. We waited HOURS for him. He had NO regard for his patients or their families, and then when we finally got into see him, he spent five minutes with us because he had a PRESSING social function to attend. He did not score points in my book and the whole Memorial Sloan Kettering experience was a nightmare. The head oncologist questioned why we even wanted to treat Mattie, because from his opinon NO ONE like Mattie ever lived to survive. So he recommended that we NOT provide treatment but simply palliative/end of life care. There was a lot wrong with this. He may have been accurate medically but psychosocially he was clueless. If I elected to do nothing and naturally Mattie would have died, I would have felt guilt and regret all my life as a parent, because I didn't do everything possible. To me this doctor, and the surgeon were unethical and inhumane and if I never see Sloan Kettering again that would be just fine by me.
Quote of the day: Give the world the best you have and the best will come back to you. ~ Madeline Bridges
It is interesting no matter how many years Mattie has been gone, you just never know what situations will present themselves. Sometimes you are prepared for them and at other times they just happen. Like today. However, he was a nice man and really meant no harm, so clearly I wasn't going to start lecturing him. So I simply said no. Mattie would be turning 15 this year, and soon in theory could be applying for his driving permit. It puts things into context doesn't it?!
As for a webinar, you basically can see and hear the speakers by logging into a website, but in this particular case if you wanted to ask questions, you had to submit them through Twitter. Not my favorite social media platform. In any case, Peter and I worked on questions ahead of time and submitted them last night, which helped the moderator today. Then throughout the hour long webinar, I got on Twitter and submitted additional questions. The moderator of the webinar was Dr. Maryland Pao, who is the Clinical Director of the National Institute of Mental Health. Maryland is also part of the psychosocial standards team and worked with us since 2013. On the webinar panel was Dr. Lori Wiener, who is the co-director of the Behavioral Health Core and head of the Psychosocial Support and Research at the National Cancer Institute. Peter and I know Lori because we have worked closely with her since 2012, to develop the National Psychosocial Standards of Care. Lori co-led this project.
If this topic interests you, I encourage you to watch the webinar by clicking the link below. I was thrilled to see Mattie Miracle acknowledged!
NIH Webinar on the Psychosocial Impact of Childhood Cancer:
https://plus.google.com/events/cn9j610ip3mpots5i7f5m30t3j4?hl=en
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