Category: Uncategorized
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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What About Genetic Mutations?
I am no researcher, oncologist, or genetic counselor–just a wife trying to do my best to understand my husband’s condition and act as his advocate. Still, one thing I’ve been forced to learn about is how specific genetic mutations can affect patients with myelofibrosis (cancer/scarring of the bone marrow). We…
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The Latest + NIH Impacts on Research
The image above is from part of an article in the April 27th New York Times. The headline reads: Medicine Spares Cancer Patients From Grisly Surgeries and Harsh Therapies It’s worth sharing because funding for cancer research is at risk and this affects us all. The article goes on to…
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New Drug Trial
I haven’t written in a while, but there hasn’t been much to share–until recently. For those of you who have been following along, you know the spleen plays a big freaking role in this cancer. Here’s a little refresher: People with Myelofibrosis have a bone marrow problem. Bone marrow is…
Myelofibrosis--A Personal Journey 