Category: Uncategorized
-
It Was the Vice Principal and the Spleen in the Bedroom
Remember the game, Clue? “It was Professor Plum with the wrench in the kitchen.” I loved that game as a kid. Maybe that’s why I watch shows like Dateline and 48 Hours way too much. Anyway, you will recall that R woke up early in the morning on November 4th,…
-
Process of Elimination
R is still at the University of Washington Medical Center. He’ll be here at least through Monday. His transplant has been postponed, tentatively, by 2 weeks. After all kinds of tests and theories, it’s still not completely clear what’s caused all of his recent medical symptoms/problems. He’s had erratic body…
-
Unexpected Start
R’s chemo had been scheduled to start on November 8 followed by the transplant on November 14. He told the docs he’d do the first 3 days of chemo (when they administer the milder of 2 chemo medications) as an outpatient, meaning he’d be at home until the 11th. Well,…
-
Info Overload
I wrote something here only 2 days ago, but we’ve learned a lot since the preparatory appointments & medical assessments began. 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…
-
And So It Begins
Little update here as we are now heavily into preparation mode for R’s transplant. Tomorrow, we meet with the finance team and a nurse at Fred Hutch. The following day we meet the transplant team–the doctor and others. After that, it’s constant appointments to check R’s health: ultrasounds, MRIs, heart…
-
Minor Updates
Not a BIG update to my last post, but we’ve recently learned a few things: Now that we’re in this critical phase, I’m unsure how frequently to post updates going forward. Perhaps weekly? I’m also unsure whether I should continue posting links on Facebook for friends and family or simply…
-
The Plan Comes Together
The faculty at Fred Hutch/University of Washington decided R should get bone marrow stem cells from a young, closely matched 9/10 unrelated donor instead of his 69-year-old brother, a 10/10 match. HOW IS A DONOR CHOSEN? The deciding factor is how closely the donor’s immune system matches the patient’s. Doctors…
-
To Transplant or Not? Depends on Insurance…
We had an appointment with Dr. Rachel Salit at Fred Hutchinson Cancer Center in Seattle this morning. We went in thinking that we wanted to move ahead with R’s bone marrow stem cell transplant, because he’s developed a new high-risk gene mutation called NRAS. This mutation means the disease is…
-
Why He Looks Fine and Platelet Donation
The photo of R in the tiny orange car was taken a few days ago. R went down a roller coaster carved into the side of a mountain in Leavenworth, WA. Does he look sick to you? I know. He’s having a blast and feels few symptoms associated with myelofibrosis…
-
The Time Has Come
Friends, it’s time. We didn’t expect it this soon, but hey, we’re gonna roll with it. R recently underwent another bone marrow biopsy, which revealed that he has developed a new gene mutation called NRAS. Studies show this mutation means that Acute Myeloid Leukemia is around the corner. He has…
Myelofibrosis--A Personal Journey 