Didn’t I tell you that Kendall is starting to grow some facial hair now that he’s off those neurotoxic chemo drugs? The funny thing is, he wasn’t really able to grow a good mustache before all of this cancer business…. His eyebrows and eyelashes have also grown back, which we’re taking as a healthy sign. Kendall’s walking is better and he is able to mostly get around the house now without his cane, although the chemotherapy he is currently on does make him very fatigued and nauseous. Still, definite improvements from a month ago.
I was able to take the transplant class(es) on Monday. They were very informative about things like nutrition after transplant, what to expect during the hospital stay, general timelines, all the services they normally offer transplant patients and their caregivers that aren’t available right now because of COVID, as well as the science behind allogenic stem cell transplants, but they weren’t very helpful in giving me answers to the questions we have right now specific to Kendall’s case. Other than finalizing a donor (still don’t have one yet), my biggest outstanding question is what will happen with our housing situation post-transplant. The hospital’s rule is that the patient cannot be more than 20 miles or 30 minutes away from the hospital for at least 100 days post-transplant (or sometimes up to six months), and we live 49 miles and 60 minutes away. There has been some talk that they may make an exception in Kendall’s case, but that does create some new problems that we will have to accommodate. Needless to say, we’re feeling anxious to get some answers so we can start planning accordingly, especially since we have four children and a dog who will all be affected by this.
In the meantime, Kendall’s schedule is probably the busiest it has been, with the regular appointments for labs, infusions, lumbar punctures, bone marrow biopsies, nurse visits, appointments with hematology, neurology, neuroscience, various oncology specialists, and now many added visits of daily radiation (of both his spine and his hip – so many tattoos!), meeting with infectious disease, MANY visits with different members of the transplant team, increased physical therapy sessions, and quite a bit of testing like pulmonary functioning, echocardiograms, COVID tests, PET scans, CT scans and MRI’s…..It’s pretty draining and makes for a lot of long days. We’re grateful that in these weeks leading up to the transplant that Kendall’s brother will be available to help with some of the driving when I’m with clients.
So, not a lot to report. Christmas was lovely and we really enjoyed getting to be together as a family without any trips away or appointments or procedures. We will also get a break on New Year’s Day. Happy New Year!