I wrote something here only 2 days ago, but we’ve learned a lot since the preparatory appointments & medical assessments began.

• The transplant team found R a different European donor who’s a 10/10 match. We knew they found a 9/10 match before, but the search continued, and they found a 38-year-old German man who fit the bill perfectly. We’ll be able to contact him directly at the 2-year mark, but if we want, we can write him a letter, and the transplant nurse will mail it to him.
• On October 21st, we met some of the “orange team” at Fred Hutch. The transplant teams are organized by color. The lab collected 24 vials of blood (yes, 24). The PA (Hannah) conducted a physical and documented R’s medical history.
• She clarified the timeline, a point of confusion. R will have 1 week of impatient chemo followed by the transplant, which they refer to as “Day 0.” He’ll stay in the hospital for 2-3 more weeks, and if he’s doing well, he can come home or we can stay in hospital housing where they provide a shuttle to and from the hospital at The University of Washington.
• R wants to come home as soon as possible, and who can blame him? We’ll drive to Seattle daily for follow-up appointments. For us, that could be anywhere from 30 to 60 minutes each way, depending on traffic.
• He’ll still be in a “quarantine” of sorts for approximately a year, because his immune system will be in its infancy with the new donor cells fighting their way into his diseased marrow. Limited visitors will be okay with masks, etc.
• Doctor Salit told us that approximately 8-10% of patients die from the transplant procedure within the first year. 10% have a relapse of the cancer with a re-emergence of the dangerous gene mutations. If that happened, they could give R a “stem cell booster” from the same donor in hopes he wouldn’t need a 2nd transplant.
• On days 14-20 (counting from day 0, the transplant day) they look for signs of cell engraftment (called chimerism). R will need lots of blood and platelet transfusions through the Hickman line in his chest…plus antibiotics to fight infection.
• They’ll closely monitor his organs to make sure the new cells aren’t attacking the liver, kidneys, eyes, etc.
• For the first year, R will take a low dose of medication that myelofibrosis patients take to slow down the disease and prolong the time to transplant. The evidence shows that taking it AFTER transplant reduces the chance of relapse and serious side effects like severe nausea, diarrhea, body rashes, etc.
• Another tough reality–anyone who goes through this process has a higher chance of getting other cancers, most often basal and squamous cell. R will need regular dermatology appointments and other specialist check-ups for a long time.

We’re holding up alright. Nervous and scared and resigned. Gotta do it. Your encouraging messages of love and prayer continue to boost our spirits.

Pic above of R and me, circa 1984. We met in 1980 and married in 1986.