Shwachman-Diamond Syndrome Friend

A lot has been going on lately. I have had crazy work weeks from 60- 85 hrs in the recent months. This weekend I joked that I only worked 64 hours, not including 7 hours of drive time. I have bills to pay, so I work. I have been hiking, camping, cycling and kayaking in my “spare” time, but between work and making the most of my “spare” time, I don’t have time to write anything.

It took over 60 days for California to issue the burial permit for my dad’s remains, but just over a week ago, his ash was shipped to California. What insanity! 60 days! California opened up, I got tickets, made plans, and in a few weeks, it all went up in smoke because they closed again due to COVID19.

As I think I have said before, my youngest two boys have Shwachman-Diamond Syndrome. It is a genetic bone marrow failure syndrome that is considered to be pre-leukemic. My boys’ have to have regular bone marrow biopsies to check their marrow for MDS and/or leukemic changes. Thankfully, after many years of scare, clones and sometimes blasts, their marrow has stabilized. Even if young adults with Shwachman-Diamond Syndrome have improved blood counts, they can still develop aplastic anemia, MDS and leukemia.

Back in 2008, we met this really amazing Canadian family at Camp Sunshine. We went to camp many times over the last 13 years— they were one of the nicest families you will ever meet. They make us laugh until we can’t breathe, they sing like pros and they have the biggest hearts. Many of my church friends have been praying for Sophie since she had her bone marrow transplant — I am so thankful for the prayers, and I know they are, as well. Last Monday, Sophie was placed in Hospice. Her transplant failed and she developed very aggressive leukemia. There is nothing else they can do. Please pray for Sophie! Her mom posted that she only has a few days to live. I cannot even begin to imagine what they are going through.

My middle son and I have been praying all all along, and this weekend, we remembered all the good times we’ve had at camp with Sophie and her family. She is too young ……… my heart is broken. Please pray for Sophie and her family. <<<—this is why I decided to write a blog entry tonight. Pray for her as she goes to meet Jesus.