A few people have asked how R is doing and if the drug study has begun. R feels pretty well, considering. He’s mostly just tired but stays busy with all sorts of things. He’s got lots of interests and talents—gardening, restoring antique cars, woodworking and more.

The drug (Imetelstat) study got going a month ago. It was a ten-hour day for him between all the tests they ran and the IV infusion, which lasted a couple of hours. He wound up with a red lump where the IV had gone in (upper wrist), and it remained sore for a couple of weeks. They did not think it was infected, so that was good. It might have been a reaction in the vein the way the IV was put in.

After that day, R’s been going to downtown Seattle weekly for blood work. It’s a good thing we live within reasonable driving distance. On a favorable traffic day, it can take thirty minutes. On a bad traffic day, it can take an hour.

We’re not sure how we’ll know if the drug is having the intended effect, which is to address R’s anemia. Once they have his anemia under control, they can increase the medication he’s taking to reduce his spleen size because, so far, it’s not working. I’m not talking about the type of anemia you usually hear about where adding more iron to your diet can help. It’s the type of anemia where his hemoglobin, hematocrit and red blood cells are way below normal levels. Checking his blood weekly helps the doctors monitor those levels closely.

R will go in every month for another infusion. He went this morning for round two and got turned away because he took his spleen medication before he left, and I guess that is a no-no. He’s scheduled to go back tomorrow. Between now and then, he’ll walk around with 2 IVs in his arms so they can easily hook him up tomorrow without having to make more “pokes.”

When anything else happens of significance, I’ll post again.

Love your family and friends. Speak it. Show it. Live it every day.