Tonight's picture was taken in March of 2007. For spring break we took Mattie to Key West with Peter's parents. Along our journey we came across this aquatic center, which introduced children to marine life. This fellow took out a stingray to show it to Mattie. Mattie was curious but cautious. Which was why I typically tested things out first.
Quote of the day: Today's coronavirus update from Johns Hopkins.
- Number of people diagnosed with the virus: 28,938,762
- Number of people who died from the virus: 524,066
This morning I received a phone call from a friend. This friend and I met when our children were diagnosed with cancer. Our outcomes have been different since her son is a survivor, but he has relapsed several times and life has been anything but easy for the family. What stunned me today was I learned my friend was just diagnosed with cancer and that we share a doctor in common. Honestly life isn't fair, as I would hope that having a child diagnosed with cancer would be more than enough for anyone one person in a lifetime!
As I find is true in 100% of cancer diagnoses, the discussion is always psychosocial in nature. ALL the stuff doctors and hospitals don't want to address and face! In any case, as my friend was telling me about her cancer surgery, I reflected on the procedure I had done in September at the same hospital. My story and her story as it related to POOR patient care, compassion, and competency were the same! I find this deeply disturbing given that I wrote the hospital a four page letter about my experience and how staff need to learn about trauma informed care and compassion. I would like to think that my words and follow up conference call went somewhere and it wasn't a waste of time. After this morning's conversation, I realize it was. Which frustrates me and upsets me at the same time. As I don't care for hospitals that use buzz words like patient centered care, and then don't follow through.
I complained and took my time to highlight issues because I did not want future patients to experience what I did! Instead of that happening, I see the same problems repeated in my friend's horrible experience. My friend has enough going on and should not have to expend the energy to advocate and share her experience with the hospital. But I told her when she has regained some strength, she should consider joining forces with me, as we reach back out to the hospital's administration.
Can you imagine going into a hospital, unable to have a family member by your side because of COVID, contending with a cancer surgery and on top of all of this have to cope with insensitive healthcare professionals? These negative interactions stay with us and cloud our impression of a hospital system. Of which I am quite sure after my experience and my friend's experience, I wouldn't be heading back to that hospital for ANY inpatient treatment in the near future.
My friend worried that her concerns and feelings weren't justified! I cleared that up right away. Needless to say today's call fired me up and reminded me once again how important Mattie Miracle is, because we had the wherewithal a decade ago to understand that cancer is NOT JUST ABOUT THE MEDICINE. Trying to get a healthcare system to change its thinking on holistic care is challenging, but it MUST be done, which is why I'm confident that Mattie Miracle's mission will never be obsolete.
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