I am writing this halfway out of empathy and halfway out of frustration. I am somewhere between both right now.
Sophia started phase 2 of maintenance on Monday (two days ago) and this seems to be her lowest point in quite some time. As I said in previous posts, each of these segments are broken in to eight weeks over the next two years. Each starts with a spinal tap, include a vincristine infusion and is proceeded by one full week of dexamethazone (steroids). I’m not sure if it is because she hasn’t had steroids in a while or if it is because of the newly increased dosage, but she is NOT taking this well. Mostly she has been crying for the last two days. So much so that her cheeks are badly chapped from tears. She is incredibly volatile and angry at everything. She says that her skin feels “like it is being burned with tiny burns”. I’m not sure what that means, but it sounds very unpleasant.. I finally got her to sleep last night by taking her for about an hour drive until she eventually sobbed herself to sleep. Long story short, this is turning out to be a very terrible part of treatment… And here we thought that it was going to be a lot easier from here on out..
She was taking a drug called Marinol, which is the synthetic form of THC and it helped her SO much during previous bouts with dexamethazone, but we ended up seeing a seemingly very conservative doctor a few months back who became very upset that she was even prescribed marinol in the first place.. Like it was our fault or something, and decided that Soph can not ever have it again.. She then told me that she would willingly prescribe Ativan for her exasperation. So instead of a more natural remedy, we are left to resort to more medications to help deal with the side effects of these treatments… Not happy about this..
We said that we were not going to give her the Ativan unless we absolutely had to, but we absolutely had to just a few hours in to the first day..
This has been the worst week in a long time, and we are only going in to our third day now.
I wish I could find something that would help this girl with the horrible sickness and anxiety these drugs are putting her through.
The other bad thing, or possible bad thing, is that the chemo might not be working right now.. Sophia’s blood counts include an ‘absolute neutrophil count’ or ANC. Her ANC is suppose to remain between 501 and 1500. If it drops below 500, she will be deemed neutropenic, like earlier this year before her blood transfusion, and late last year (around thanksgiving). However the opposite is now happening and her ANC is sitting at over 4000..
Now, this would not be a bad thing for you or I, in fact ours is likely much higher, but the fact that hers is so high right now might mean that the chemo is not doing its job at regulating her cells. And if it doesn’t regulate the good cells, it might not regulate the bad ones, possibly allowing her leukemic cells to rebuild.. They said we shouldn’t worry until next month when they see her at clinic, and if that IS the case, then they will start by increasing the dose of her daily chemo.
So, until then, there is really nothing we can do except try to get through this next week..
Hopefully my next post will be with better news and a better outlook.