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 and his particular dangerous genetic mutations. This whole thing doesn’t make sense.

I tried to put some info about this on Facebook, but it came out all wonky and difficult to follow. I am reprinting it here for easier reading. I will also post information about donating platelets (which anyone can do if they are 17 or older). It’s a lot to process, but a lot is going on right now as we prepare for transplant.

We don’t have a date yet, but we will meet with the transplant doc on July 22nd. We’ll see what she says about the timeline and all the preparations he’ll need to undergo (as well as what I need to do to get the house ready for when he comes home). I plan to post frequent updates once this gets underway, as many people have requested it, and I want to educate those who are interested. Plus, it’ll give me something to do when R is in isolation and can’t see anyone except me and immediate family, but not grandchildren–this is a heartbreaker. They can carry many viruses, with or without symptoms, and R will have NO immune system for quite some time. Viruses, in his case, can be deadly.

WHY DOES HE LOOK AND FEEL FINE? (from chtGPT)

1. Myelofibrosis Is a Bone Marrow Cancer That Progresses Silently

• Myelofibrosis (MF) begins in the bone marrow, where it gradually scars over time.
• The bone marrow can compensate for a while by producing blood cells in other parts of the body (like the spleen or liver), so patients may have few symptoms early on.
• Meanwhile, dangerous molecular and genetic changes can accumulate — even if the patient feels okay.

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2. High-Risk Mutations Can Outpace Symptoms

• Mutations like ASXL1, NRAS, or newly acquired TET2 clones are considered “very high risk” because they increase the chance of rapid progression to acute myeloid leukemia (AML).
• These genetic signals may appear before any major drop in blood counts or visible illness.
• So while someone might “feel normal,” their disease biology says the clock is ticking.

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3. Blood Counts May Be Marginally Low — But Not Low Enough to Cause Symptoms

• Many patients feel fine with a hemoglobin of 10 or platelets of 100 — but those are warning signs of declining marrow function.
• A blast count of 1% might seem small, but it’s still abnormal and could be the first sign of leukemic transformation.
• The body often adapts to gradual changes, so patients might not feel different until there’s a sudden downturn.

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4. When Symptoms Do Appear, It May Be Too Late for Transplant

• Once MF transforms to AML, survival drops dramatically — and transplant success rates plummet.
• The safest window to transplant is before transformation, while the patient’s organs and immune system are relatively intact.
• Transplant is most effective when done proactively, not reactively.

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5. Clinical Guidelines Recommend Acting on Risk, Not Symptoms

• Tools like MIPSS70+ and DIPSS factor in mutations, marrow fibrosis, and early lab values — not just how the patient feels.
• If someone scores as “high risk,” even in the absence of symptoms, the standard of care is to refer for transplant evaluation immediately.

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🔑 Bottom Line

Even if someone with myelofibrosis looks and feels fine, the disease can be quietly evolving toward a point where:

• The marrow fails
• Leukemia emerges
• Transplant becomes riskier or no longer an option

So acting early, based on molecular and marrow data — not symptoms alone — is the key to survival.

HOW TO DONATE PLATELETS NEEDED BY PATIENTS WITH ADVANCED MYELOFIBROSIS, LEUKEMIA AND OTHER CONDITIONS (from chtGPT, my new best friend)

I have an appointment to donate platelets later this month and plan to go back regularly. The platelets won’t help R because they have a “short shelf-life,” but they’ll help others. You can learn more about the process by visiting your local donation center’s website. Where I live, it’s Bloodworks Northwest.

1. Choose a Reputable Donation Center

These are the most common and reliable places to donate:

• 🇺🇸 American Red Cross — redcrossblood.org
  • Nationwide reach
  • Easy online appointment scheduling
• 🏥 Local Blood Centers
  • Examples:
    • Vitalant (vitalant.org)
    • OneBlood (Southeast U.S.)
    • New York Blood Center
    • Stanford Blood Center
    • Bloodworks Northwest (Washington/Oregon)

Thank you for all the love and support. It will be so important in the near future. I suspect there won’t be much people can physically do for us, except “be there in spirit,” which will lift us up when things get rough.

PS: the image of R with a sword is him as a badass warrior–love it!