Journal entry by Adam O'Kelley —
Today is day 12 of 28 days of my first cycle in the clinical trial. So far, I’ve felt fine and don’t’ really have any side effects to speak of. My blood counts remain very low, so I have to be very careful and try not to get any infections, as my white cells are near zero. I basically haven’t had an immune system for 2 months now, so I’m living life right on the edge as infections are a medical emergency when you’re neutropenic (low white cells). I’ll have a bone marrow biopsy on Tuesday to see if the trial is making any progress against the Leukemia cells and another one in 2 weeks on day 28 of the trial. I was told by the trial nurse that the remissions they are seeing in this trial sometimes take 3-4 cycles, so it won’t be unusual if we don’t see a remission after the 1st cycle, we’re just hoping for progress. We’re likely in a marathon now, not a sprint, so please pray that I stay infection free as to continue the treatment, if it’s working.
On another note, I was told my most recent donor donated some more blood cells last week, and they have been frozen and sent to MDA. The goal would be to have a Donor Lymphocyte Infusion once I’m in remission or closer to remission to hopefully help produce a durable remission. More to come on that.
On the family front, we had a pretty eventful spring break. On Monday, Addison broke both of her wrists jumping out of a swing at the park. I happened to be home, so I drove her to the ER and met Amanda there as she was out and about. It was a little scary at first as both arms were deformed and she was in a lot of pain. Fortunately, we were able to get her checked in to the ER quickly and she was given pain meds to make her more comfortable. The ER doctor was able to reset the bones fairly easily on both wrists and placed temporary splints on both. The next day, we followed up with an orthopedic doctor, and he plans to put her into more permanent casts this Wednesday. The good news about the casts is that they will be below the elbow, so she’ll have use of her elbows again, unlike in the splints. Right now she requires 24/7 care as she can’t really feed herself or go to the restroom, etc. That should change on Wednesday 🤞🏻 and give Amanda a little more of a break. Anyways, she’s been a trooper and is one tough little girl.
Thanks for being on this journey with us, and I’ll update soon.
Stay Rooted,
Adam