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…

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