Tonight's picture was taken in February of 2009. I mentioned Mattie's footprint on the blog a few days ago. This footprint was taken by his art therapists in clinic. They added it to a welcome sign in the pediatric unit of the hospital. A friend of Facebook sent me this photo today. It is not a photo I have because I was standing on Mattie's left side and this mom was standing behind Mattie. Frankly I did not remember that this mom was even in clinic with me that day! This welcome sign has Mattie's footprint on the right hand side, and on the left hand side is a hand print. But the hand print belongs to Morgan, who at the time was a baby undergoing treatment for leukemia.
Quote of the day: Death is never easy when you know the people doing the dying. ~ Oliver North
In May 2015, Vice President Biden's son, Beau, died at the age of 46 to brain cancer. Since that tragic loss, VP Biden is committed to finding better treatments and an end to this complex disease. Naturally as a parent advocate, I know MANY parents who have lost children to cancer. However, not having VP Biden's political position we do not have access to the resources to make our requests a reality.
Yesterday there was an hour long twitter session in which advocates and others could have a dialogue with Dr. Francis Collins (the NIH director) about this Cancer Moonshot initiative.
This photo was circulating all over the internet. While the cancer community is thankful to VP Biden for his personal commitment to a cancer "moonshot," this moonshot MUST include childhood cancer.
Of course we at Mattie Miracle take it one step further that in addition to funding and supporting biomedical research, this initiative must also support psychosocial research to care for children and families throughout the cancer trajectory.
Research highlights the importance of psychosocial care for managing pain, adherence to treatment, and overall quality of life. It is time to step up and truly address comprehensive cancer care which means addressing the WHOLE patient and their FAMILY MEMBERS.
Yet when you look at the White House fact sheet (https://www.whitehouse.gov/the-press-office/2016/02/01/fact-sheet-investing-national-cancer-moonshot) for the Cancer Moonshot initiative, look at what is glaringly missing..... Psychosocial Research and Care.
The idea that a concerted government push can lead to a
“cure” for cancer is nearly a half century old, stretching back to President
Nixon’s failed “War on Cancer.” The chances of reaching a moment of victory as
the analogy “moonshot” suggests seem entirely unrealistic.
“This is not about getting to one point in a certain period
of time,” said Dr. Harold Varmus, a Nobel laureate and former director of the
National Cancer Institute. Unlike in 1971, when President Nixon launched his cancer
war, researchers now understand that cancer is not one disease but essentially
hundreds. The very notion of a single cure — or as Mr. Obama put it, making
“America the country that cures cancer once and for all” — is misleading and
outdated (NYT article:
http://www.nytimes.com/2016/01/14/health/moonshot-to-cure-cancer-to-be-led-by-biden-relies-on-outmoded-view-of-disease.html?action=click&contentCollection=Politics&module=RelatedCoverage®ion=Marginalia&pgtype=article).$1 Billion Planned for Cancer Moonshot:
http://www.nytimes.com/2016/02/02/us/politics/dollar1-billion-planned-for-cancer-moonshot.html?_r=2
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