Maintenance. Phase 2.

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.

Maintenance – Day 0

I feel like I am becoming worse and worse at keeping this blog up to date.. Seems like months are flying by between updates. Between my work schedule and all of the hospital visits, it’s becoming harder to find time for the little things. I am learning more and more though, that the little things are very important and it is a necessity that said time be found.. or made.

So, today is the last day of interim maintenance II. Sophia’s been through quite a bit since my last update, but has again handled most of it with the same resilience as she has always shown. Her hair finally fell all the way out around February or March, but now in late June its coming back and looks like a fresh buzz-cut. I’m not sure if the upcoming treatments will cause it to fall out again.. but I don’t think it will. Either way, she doesn’t seem to mind much.

She had to take a lot of nasty drugs and chemo during the last few months. Obviously, some sickness and ill side effects accompanied that. I think that the worst of this though has been her mood. It might be partly because of the stress and partly as an actual side effect, but she has definitely become very high strung, snappy and pretty annoyed, all around. It has been a struggle trying to keep her happy yet not spoil her, or better, let her be the boss..

When she gets older, we want her to feel accomplished, not entitled.

I think a lot of that is starting to go away now. She seems to be eating better and less moody. Definitely more active, so for the time being, pretty good provided the circumstance.

In a few moments she will go in to the propofol clinic. Get knocked out and endure another spinal tap (LP) with introthecal methotrexate. We hate the anesthesia because of the obvious potential complications, although luckily she has never had any ill effects from it.. After that, she will have a vincristine infusion and we are free to go.

This is the last treatment in this phase and from here she moves to maintenance. The maintenance phase will last two years and because we have her enrolled in a study, she will be randomized in to one of four treatment schedules.

The study is something they asked if we would participate in when soph was first diagnosed to help with refining the treatment protocols for this type of cancer. The randomization is all based off of the same medications, methotrexate, vincristine and the steroid dexamethazone but different doses of them to see what works best with using the least amount of drugs. We will know in about 5 minutes what the next 2 years of this will look like for us, but we know for sure it will include those medications.

So, she is getting ready to go in to propofol, so I’m gonna cut this short and hopefully I get better at keeping this up. I promise to try my best, is this is as much for me as it for those of you who wish to read it.. a public journal of sorts, and will help should I someday wish to revisit this story.

…or edit it to include aliens, dragons and/or the use of super powers…