Tonight's picture was taken in December of 2008. Mattie's "girlfriend," Charlotte, was celebrating her 7th birthday. Mattie loved Charlotte and I know he was happy he was out of the hospital and could attend her party. As you can see he was sitting right next to her and was trying to help blow out her candles. I actually learned a great deal from Mattie and Charlotte's friendship. Charlotte was a devoted friend to Mattie and visited him often in the hospital. Even though there were times that Mattie was personally angry and upset with his situation and as such it affected how he related to people. Charlotte, though 6 years old, seemed to intuitively get this and never waived in her commitment to Mattie. If that is not friendship, I don't know what is.
Quote of the day: Listening is a magnetic and strange thing, a creative force. The friends who listen to us are the ones we move toward. When we are listened to, it creates us, makes us unfold and expand. ~ Karl A. Menniger
Sunny is staying close and also helping himself to the couch, beds, and anywhere he feels comfortable!
My morning started off by participating in a psychosocial research study. I was interviewed for 90 minutes by a researcher at Children's Hospital at Philadelphia. I am familiar with her, as I have met her in person before and have great respect for her work and also am impressed with her genuine understanding of the issues children with cancer and their families face. This is a psychologist who is well respected in the field and is a leader in psychosocial research. Yet what was she saying? She was basically thanking me for MY CONTRIBUTION and for being the visionary for the Standards of Care. Standards which she says guide her practice and that of the institution. Keep in mind that Children's Hospital of Philadelphia is one of the premier cancer treatment sites for children in our country.
Though I was a research participant, I found the conversation we had THE GIFT! Mainly because I felt that my insights with Mattie's care, will help shape an assessment tool that is being designed to help screen children/families who are at risk, and this tool will ultimately enable children and families to have a higher quality of life. If psychosocial issues are assessed for early on, then support can be provided before a crisis unfolds for the child and the family.
One of the comments I provided to this researcher today was that I was always stunned that Mattie's medical treatment team never realized he could potentially develop medical traumatic stress. In hindsight I truly don't get how they didn't conceive this as a possibility! Given Mattie had multiple bone cancer sites and need multiple surgeries. Surgeries which left him disabled. It was the perfect storm..... cancer and disabilities! It makes sense to me that profound issues would arise. Yet in Mattie's case it was ME who diagnosed the issues and demanded psychiatric care for Mattie. The team seemed clueless that medical care could lead to trauma!
In any case, my point to all of this is when designing an at-risk assessment tool (survey), it is vital that the tool take into account the child's diagnosis and medical treatment plan. Because in my opinion certain cancer diagnoses put patients and families at higher risks for psychosocial issues than others. At the end of our 90 minute talk, I was offered an $100 gift card for my time. However, I told the researcher that I did not want the card, but instead I asked her to donate it to her psychosocial program or to a family in need. Because for me the gift was to be listened to, to be able to contribute to research, and to know that Mattie's experiences have enabled me to help others.
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