January

Seems likes it has been a lot longer than it really has since I last posted. Little over a month, but I suppose a lot has happened in that time.

So, last thing I was talking about was the rash.. Turned out it was some crazy average child virus that Sophia somehow caught. Thank goodness it was not due to the last cycle of treatment, otherwise it would have happened every week. It did have the dr’s stumped, but when a pediatric dermatologist from the hospital had a look, he said it must be a virus and would go away in a week or so. We ended up having to use lidocaine like lotion on her though.. for those first 4 or 5 days, she only slept a few hours a night due to the pain, but as said, it went away and all was well.

She ended the last treatment cycle last week, and she is now currently one week in to a two week break before she starts Delayed Intensification. This last cycle wasn’t terrible, but I suppose it wasn’t great either. I brushed on the specifics a few posts back I think. The hardest part of this last cycle was the escalating dose of methotrexate. If I am correct in this, she started off with an infusion of 50mg and that was increased every week until her last dose last week of 350mg. Pretty heavy shit, indeed. She had vincristine every week as well.. But that has been the same since the start.

The methotrexate infusions didn’t make her terribly sick, as anticipated. Just a bit here and there. I have definitely noticed a loss of appetite. Big time. It’s like she wants to eat because she is use to it.. meal times, that is, but once she gets something in front of her it is rare that she will dig in. Little bites, nibbles and snacks, but she doesn’t really eat a full meal anymore. Sometimes.. but it is rare.

The thing that really freaked me out (I didn’t know this would happen) is that her finger and toe nails have all started falling off.. really creeped me out at first. I noticed that she was missing a nail and I thought she may have tore it off playing or something.. Then another and another and so on until I realized what was happening. They never told me about that one.. She just lost her pinky nail on her right foot about 10 min before I started writing this. We bandaged them up one by one. It doesn’t seem to bother her at all.. But damn, it creeped me out.

The next phase of treatment (delayed intensification) will be 57+ days. She starts on feb 25th. As I was told, days 1-22 will consist of another fucking steroid called Decadron. She will have bursts of 7 days on 7 days off for this period. Not as bad as that terrible month of dexamethazone, but I have really come to hate these steroids.. personally I think they are worse than the chemo.. luckily it is not a drug she has to take very often. She has to have an EKG before this cycle begins because she will have to take a medication called doxorubicin, and apparently this can effect her heart.. in what way, I don’t know. She will also get a chemo called pegasparaginase, and of course, our old pal vincristine.. The spinal taps will continue as well.

So there you are, that is about the skinny of what has happened and what will happen over the next couple of months. I promise to keep this blog better updated, I have just had a crazy month at work.. In a good way, but I have had little time to keep up with this. So I’ll try and do better.

My next post however, will be amazing news. We finally heard back from the make a wish foundation (Soph became eligible for a wish in January) and she is getting something pretty amazing.. But I’ll leave that for next time. 🙂

Good night all.