Wednesday, March 15, 2023

Wednesday, March 15, 2023

Tonight's picture was taken in March of 2009. Mattie was in the outpatient clinic that day, and was visited by employees of United Airlines. They came to deliver teddy bears to all the children. As you can see, Mattie was posing with the United representatives and the cute bear! The generosity of countless organizations, businesses, non-profits, and our care team made the daily stresses of hospital life much more manageable. I can't tell you how even the smallest of gifts could turn a difficult moment around for us!

Quote of the day: Perspective is everything when you are experiencing the challenges of life. ~ Joni Eareckson Tada

Given how my mom is feeling, I have canceled everything on her schedule for this week, including physical therapy and a trip to the hair salon. I got my dad up at his usual time, followed my usual schedule with him, and then Peter drove my dad to the memory care center. By 10am, my mom was still not downstairs, so I went upstairs to check on her. She looked completely wiped out and exhausted. After she had breakfast, I helped her to the couch to rest for several hours.

While my mom rested, I logged back onto a training site I was given to continue the course work I need to complete to participate in the Foundation's large scale research study. I have to tell you this is beyond PAINFUL! Yesterday, I completed these four modules. After each module, I have to take and pass a quiz. You can see my scores range from a 60% to 100%. Yesterday's modules were on financial conflicts of interest in research. The materials read like a legal briefing! When I completed these four modules yesterday, I thought I was DONE! NOT SUCH LUCK, as I could see more course work to complete in my folder. 

This morning, my folder showed that I had three more courses to take! You might say, how bad could that be???? I assure you it's bad, because one course has 14 training modules. This one course will take me days to complete given my caregiving schedule. Today I completed 5 modules out of the 14.

This is the listing of the 14 modules and as you see I completed 5! I did well on four out of the five quizzes. One quiz, I missed one question, and that gave me a 75%. Which is why I need to focus and get it right the first time, because I don't want to know what happens if I fail the course. The notion of doing this again is NOT appealing. 

Meanwhile, Peter is working around the house on multiple projects before starting work on April 15! Despite the wind and cold temperatures, he was re-shingling our shed roof. 

While putting laundry away in my dad's bathroom, I had a side kick! Miss Indie LOVES the sun and basically travels around the house capturing the warmth through the windows. 

This afternoon, I received this photo from our friend, who happens to be the leader of our Standards of Care research project. She is out in Portland, Oregon at a conference. One of the sessions featured Mattie Miracle, so she thought I would love to see this.... which of course I DO! 

This session covered a research study conducted by a psychosocial professional based in Texas. The researcher implemented the Psychosocial Standards of Care at her institution and she was sharing data about the process. It is always wonderful to see the Standards being operationalized in research and practice in order to improve the quality of care for children with cancer and their families.