Tonight's picture was taken on May 11, 2009, at the Mattie March. This was an event that Mattie's support community held for him in his honor at his school. Pictured next to Mattie is Bob Weiman, the assistant head of Mattie's school. Bob visited Mattie almost weekly in the hospital and during those visits taught Mattie magic. In fact, the first time I brought Mattie to his school's open house for new students, Mattie met Bob. Bob performed a magic show for the students and it was a turning point for Mattie. Prior to meeting Bob, Mattie did not want to leave preschool nor did he understand why he had to switch schools. However, after the magic show, Mattie seemed more at peace with the change. When Mattie was undergoing cancer treatment, it impacted not only his physical ability, but it also affected his confidence, his ability to communicate with people, and his mood. When Bob came to the hospital to teach Mattie magic, his attitude changed. Magic gave Mattie courage, it taught him that he had unique skills and it also helped him connect with his healthcare providers. Tonight's photo was taken during the magic show at the Mattie March. Bob and Mattie performed their famous Peanut Butter and Booger trick, which Bob now affectionately calls the Mattie Brown!
Quote of the day: Today's coronavirus update from Johns Hopkins.
- the number of people diagnosed with the virus: 890,524
- the number of people who died from the virus: 51,017
It was another busy day with video conference calls. Unlike Peter, I had no prior experience with such calls. It may sound easy to have such calls, but if you are used to face to face meetings, then these on-line video calls I would say are challenging. There has to be some etiquette and ground rules because otherwise things get out of control quickly. As it is harder to keep someone's attention through a computer rather than face to face. So some people will kind of drift off and play with their phone or other distractions, meanwhile they are not muting their sound, so you as a participant you can hear everything else going on at that person's house. I have seen people taking phone calls while on a conference call and not muting the sound. One person today was even playing with their dog. It can actually be humorous!
In the midst of everything else going on, I somehow got signed up to be in charge of recruiting childhood cancer families for a researcher's study in Washington State. This all started because I couldn't find nor generate evidence based infographics that highlight the issues and coping strategies for the childhood cancer community during COVID. Because I couldn't answer this question, I started searching, and searching, and searching. Finally I found a medical doctor who seemed to be interested in focusing on the resilience of cancer patients during the Coronavirus crisis. His focus being on adults with cancer. Until I contacted him, childhood cancer was not on his radar scope. I wanted to change that and also through stories be able to provide more meaningful information to our community beyond eating right, exercising, and staying connected to friends and family.
Honestly I got so frustrated with my endeavor to create a psychosocial infographic because I could find no substantive information, that at one point I told Peter, "FORGET IT! I can't find it and I'm giving up." But Peter said to me, "that doesn't sound like you." So with that, I went back at it. I found an intriguing article written by a medical doctor, I wrote to him, then talked with him, and now am involved in the process. Peter and I have been advertising this doctor's study all over social media and we are getting LOTS of responses. Which I assure you is time consuming because it involves explaining the study to parents, answering questions, hearing their cancer stories, responding back appropriately, and then finding times to coordinate interviews. Mind you everyone is on a different time zone, as participants are from all over the country. This isn't a Mattie Miracle study, therefore we have nothing at all to gain from this, other than giving a voice to childhood cancer and allowing parents to tell their family's story with cancer and how COVID is impacting them. The study is open to parents whose child is in treatment, parents whose child is a survivor, as well as parents whose child died from cancer.
On a happy note, I received an email today from Bob, the Magic Man. Bob was saddened to hear that the Mattie Miracle Walk is going virtual this year. As every year, Bob performs magic at the Walk in memory of Mattie. Bob proposed that he offer a virtual show! We are working out those details. But Bob shared with me the links below. He has a magic blog and is also performing one trick a day for the school during the pandemic. If you look at the links below, you will notice that Mattie Brown is in both of them! Mattie, I believe, had a profound impact on Bob. As I know Bob had a profound impact on us.
5 Reasons Your Child Should Learn Magic
http://blog.sssas.org/5-reasons-your-child-should-learn-magic?success=true
5 More Reasons Your Child Should Learn Magic
http://blog.sssas.org/5-more-reasons-your-child-should-learn-magic
Magic tricks each day:
http://info.sssas.org/weimans_magic_tricks
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