10-1-23

A few things have happened since the last time I wrote—one is a medication change, and the other is news on a stem cell donor.

​R has been on Hydroxyurea for three to four months. This medication can help normalize blood cell levels and, thus, reduce the size of the spleen in people with Myelofibrosis. When a person’s bone marrow is not producing healthy or the right number of blood cells (white, red & platelets), the spleen and even the liver try to do the job. Who knew the spleen and liver could produce blood cells? When this happens, the spleen and liver grow larger, which can lead to a spleen rupture. A normal spleen is the size of your open hand. R’s spleen is closer to the size of a football.

​R’s spleen did not shrink on the Hydroyeurea, as the doctor hoped. So, the new doctor he’s seeing switched him to a medication called Jakafi (generic name: Ruxolitinib). It treats certain bone marrow disorders (Myelofibrosis and Polycythemia Vera). It works by blocking your body from producing substances called growth factors. Growth factors can cause unhealthy/malformed cells to grow and divide. Though not a cure for these disorders, Jakafi may help control symptoms, including abdominal discomfort, pain under left ribs, early feelings of fullness from meals, night sweats, shortness of breath and bone pain.

​Fingers crossed that R’s spleen starts to shrink on the new medication. At the moment, he feels a fullness in his left abdomen, which causes pressure and discomfort. It also means he eats less because his stomach is squished. He’s lost about twenty-five pounds without trying in the past three years. Now we know why.

​Onto the good news. R’s only brother is a 100% match for his bone marrow stem cell transplant. We don’t know when he’ll need it, but when the time comes, his brother will give him the best shot at life. Finding the right match can be a challenge for other patients. We’re incredibly grateful for this potentially life-saving development. In the meantime, we’re living large–planning more travel, and R bought himself a new truck after having his old one for over twenty years.

​Thanks to everyone who’s been reaching out to check on him (and me). We feel so much love and warmth around us.