Tonight's picture was taken in April of 2008. Talk about singing in the rain! This was the beauty of Mattie. Days were never boring with him. Mattie loved being outside and had no problem with rain, snow, wind, you name it. Do note that we went out to our deck to water our plants, but notice how quickly that activity changed!
Quote of the day: Today's coronavirus update from Johns Hopkins.
- number of people diagnosed with the virus: 873,137
- number of people who died from the virus: 49,478
Today was a busy day. I have to admit, I was never a big phone person before, but now in addition to phone work, like everyone else, I am dealing with Zoom and video calls. I have several of them in any given week, and to me they chew up the day. By the end of the day, I feel like I have gotten nothing done. I am getting increasingly frustrated with my days.
We took Sunny to his physical therapy evaluation today. The rehab vet says that Sunny is doing quite well and tolerating full weight on the leg. However, Sunny's right back leg has atrophied 6cm already. So he needs physical therapy exercises at home and once a week in clinic. Needless to say, Sunny is NOT pleased with the weekly visits. I can't wait until they do underwater treadmills with him, as he hates water on a good day.
This afternoon, I had the opportunity to talk to a physician who works at the University of Washington. He is a family physician and also has advanced stage lung cancer. Because of his own immuno-compromised state, he can't directly work with patients now. Yet he wants to contribute and to help out in this time of crisis. So he is doing his part by conducting a qualitative study in which he wants to interview cancer patients or family members and learn more about how they are experiencing the impact of the virus and to uncover issues, unmet needs, and of course hear about ways this vulnerable population is coping. When I spoke to him today, I asked him if he was including the childhood cancer population in his study. He wasn't, until he talked to me.
So tonight, Peter and I started advertising his study (with his permission) on Facebook and through various childhood cancer platforms. It is my hope that families will wish to participate because I think we are a minority group in the cancer world. The childhood cancer community needs a voice, and I am hoping we can pair those with stories, with the physician who wants to hear, capture, and synthesize them. The reason he is starting with a qualitative study is he wants a quick turn around time in which he can write articles and begin to share information. With of course the long term goal of eventually creating a larger and mixed methodology design. But quantitative studies take time, and frankly these stories and information are needed NOW!
The message we sent out tonight:
Help us give the childhood cancer community a voice during the COVID-19 Pandemic. A physician at the University of Washington in Seattle (his study has IRB approval), is conducting a qualitative study and it looking to interview parents of children with cancer. Please read his informational letter below and feel free to respond to me if you are interested in learning more or want to sign up for a 30-40 minute interview. Much thanks!
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“The Lived Experience with Covid-19 Pandemic: Qualitative Journalistic Study”
You are invited to be part of a research study about the experience with Covid-19. The Coronavirus pandemic has affected every person’s life. Some communities, especially marginalized groups, people with illness, and the healthcare workforce were affected harder. We want to understand the day-to-day lived experience and the unmet needs of the childhood cancer community (those in active treatment, in survivorship, and bereaved parents). This study is conducted by Morhaf Al Achkar and his collaborators at the University of Washington.
Please consider being part of the study if you meet the following criteria:
1. 18 years of age or older.
2. Psychologically and physically well enough to take part.
3. Proficient in English.
The study consists of 1-3 interviews, 2-3 months apart. Each interview will last 20-40 minutes. The interviews will be conducted over the phone or via video-conference. The interview will be audio-recorded and analyzed. If you choose to take part, you will be paid $25 for each interview. Agreement to be contacted or a request for more information does not bind you to take part in any study.
Thank you again for considering taking part of this research opportunity.
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