Tonight's picture was taken in October of 2002. Mattie was six months old in this photo! I would imagine that I decided to snap this photo because Mattie was rarely in his crib. He really did not like it and preferred being with me. In fact, the first several months of his life, he slept at night on my shoulder. It was a very special moment, when Mattie graduated to his crib and finally slept. But it took a lot of training to get that point because sleep did not come easy to Mattie. Now that he is gone, I always think that Mattie decided he did not want to nap or sleep because he somehow knew he had to live life to the fullest, because he wasn't going to be with us long.
Quote of the day: There is only one kind of shock worse than the totally unexpected: the expected for which one has refused to prepare. ~ Mary Renault
This evening, we learned that one of our core researchers for Mattie Miracle died after a battle with cancer. Andrea Patenaude held various titles, such as the Associate Professor of Psychiatry at Harvard Medical School and the Director of Psycho-Oncology Research in the Division of Pediatric Oncology at the Dana-Farber Cancer Institute. We had met Andrea in March of 2012, when she agreed to serve on a panel of experts at our day long Psychosocial Symposium on Capitol Hill. Since the Symposium, we have worked closely with Andrea for the last six years.
We learned that Andrea's cancer relapsed in 2017, but like tonight's quote pointed out....... we are shocked because so many of us refused to prepare or even accept that such a bright mind, compassionate clinician, and pioneer in the psychosocial field could die at such a young age. Peter and I are stunned, but so is the rest of our core team.
When someone has cancer, it is important to respect their decision about telling their story and sharing their journey. Not everyone wishes to be candid with others and would instead prefer to manage things with a very small and close support system. Certainly I can respect this, but I think because I wasn't aware of how grave the situation was, it makes learning about her death today beyond shocking. We had no time to prepare for this reality and worse, there was no time to say good-bye and thank her for her amazing service to the field and for her significant role in the development of the Psychosocial Standards of Care for Children with Cancer and Their Families. All I know is the world is a little less bright today.
This is a very short bio that Andrea wrote about herself. It can be found on Harvard Cancer Center's website (http://www.dfhcc.harvard.edu/insider/member-detail/member/andrea-f-patenaude-phd/):
For over 25 years I have been interested in the psychological adjustment of children and adults undergoing treatment for cancer. I particularly studied the impact of bone marrow transplantation on pediatric and adult patients and their families. Increasing survival of cancer patients has led to my strong interest in survivorship, resilience, and quality of life. More recently, my work has taken on the added focus of exploring the psychological impact of advances in cancer genetics. I have studied the psychosocial outcomes of women and men undergoing cancer genetic testing for p53 and BRCA1/2 and the experience of women undergoing prophylactic mastectomy for increased hereditary cancer risk.
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