May 23, 2017

We had a check-up yesterday morning and a week off from chemo and, much to my surprise, after the first three and very intense chemo treatments of this cycle, Calum’s blood counts look good. It certainly gave me a breath of confidence that is always welcomed in this process. It is hard to wait a week to visit the doctor trying to anticipate what is going on inside of Calum. A day like today could have presented other challenges like “neutropenia” and/or lowered platelets or hemoglobin levels, which would have called for a blood transfusion, but instead we were set free to head home.

Calum has had two blood transfusions during his treatment, and both took place within about the first week back in late December/early January. We have been lucky he has stayed healthy enough not to require more. His blood transfusions were an incredible realization of how important it is to donate blood or platelets. Cancer patients depend on blood to replenish the healthy cells their bodies do not have the ability to produce. This is largely due to effects of chemo on their blood counts, but for a Leukemia patient, it can also be caused by the very nature of their disease. Whenever Calum asks me why we have to go to the doctor so much, I always tell him it is because we need to get his blood fixed. He likes vampires and I think my explanation resonates better than explaining “cancer”, which yet has no meaning to him.

Calum has been handling things as well as could be expected. He’s not feeling as well as he had throughout March and April, and has more complaints of discomfort, but still, we have remained home and cared for him here, rather than in the hospital thus far. The last few weeks have been a challenge between bouts of steroids and isolation time. We haven’t taken him anywhere public in three weeks outside of the hospital, so you can imagine how crazy it feels at home locked up with a couple of maniacs. Calum behaves on steroids pretty much how Faye behaves on the regular, and I have been going dry a couple nights a week, so if you could measure emotional swings in MPH, we’d all be on par for setting a land speed record. It’s been a lot, but it seems to be paying off in terms of keeping Calum healthy, so that is far and away the most important thing.

After hearing Calum’s counts were good yesterday, I got a burst of energy. It is motivating to see that your perseverance and diligence is paying off, however, in this process I constantly receive the reminders I need to keep my guard up. This moment came last night in the bath when I noticed Calum’s hair floating around. I’d halfway convinced myself that he may just be able to keep his hair. I am aware this is only a visual side effect of his therapy, but it is a powerful one and will make him appear sick. We will get past this too, of course, but there’s nothing quite like seeing someone’s hair fall out to give you a healthy dose of “WTF is happening”. Being at the hospital is always a good thing, however, as we are reminded we are truly the lucky ones.

Next week on Tuesday we begin the second part of this cycle called Delayed Intensification. Tuesday will be a long day between anesthesia for a spinal tap and three additional brand new chemos but, after about a week, we will be through the thick of this cycle and ready to enjoy some summer.