Jon’s Story

Site created on August 12, 2020

In February 2020, Jon got a diagnosis of primary myelofibrosis (PMF), a form of blood cancer (leukemia). Jon also has a couple of genetic mutations (JAK2 and SRSF2) that put him at intermediate to high risk of eventually developing acute leukemia.  In the near future,  Jon's PMF (or "Leu," as we call it), will act like an annoyance manifesting as heat sensitivity and night sweats. But he will eventually experience anemia,  bone pain, enlarged spleen, weakness, and fatigue. To some extent, these can be managed with medication.  A stem cell transplant  in 2-4 years will make a normal lifespan likely, and is a 25% chance at a total cure.  We'll use this site to keep you posted and  channel your support. Thanks!



Newest Update

Journal entry by Katie Pierson

Jon started taking a new drug called Vonjo (yes, sounds like "ganja") in July. His fatigue and other annoying symptoms were starting to drag him down.

He's a new man! He's back to being his bustling self, working out several days a week, and keeping up with a demanding teaching year. Bryn and Jon got our Christmas tree today, put it up, and went out to lunch. A year ago, he would have needed to save up his energy for just one thing. (And he's currently making our dinner and doing the laundry. Thank you, Vonjo!) Night sweats, itching, and spleen pain are also easing up, which is a mood booster.

Vonjo is a very low dose form of chemo, but it does not count as treatment. It treats the symptoms, not the illness. It's so new that we don't know how long to expect these benefits to last. It does seem like a promising data point that he's only on a half dose, so far. Hopefully this relief will last awhile. From what he gathers from his Myelofibrosis buddies on Facebook, he is also having fewer side effects than most of his cohort. We'll take that! His team monitors him closely, another thing for which we are grateful.  

Paige went with Jon to his last appointment, in November. Dr. Gangat said she had never seen Jon looking so healthy.

(And, Paige said that she had thought we were kidding when we'd described the powdered eggs served in the Mayo lower level cafeteria. Nope. The chia pudding is good, though.)

The upshot is that we still have no idea when the stem cell transplant will be indicated, but Jon's blood work is still stable and it seems possible, now, that he will be able to retire (in 2026) before having to deal with that circus. We'll take that.

Thank you, as always, for keeping us in your thoughts. 

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