Been a while.. again..

As usual, it’s been some time since my last update. I figure, this is a long term illness, might as well be a long term blog. As far as we know, Sophia still has a couple of years before (with any luck) she is finished with treatment. I suppose an update every couple of months isn’t too bad..

So, what’s new? Well, you know.. Good days and bad days. More good than bad, thankfully. Soph is still taking a couple types of chemo (methotrexate and mercaptopurine) in pill form 7 days a week. Spinal Taps and vincristine infusions every 12 weeks. Other meds still include zofran, septa and now some nasal spray steroid to help with breathing at night.

This nasal stuff was brought on by a pretty big scare. Started out with a mystery illness that swept her up for a day or so.. This was in January. She woke up very dizzy and out of it. For some reason she was having a hard time putting words together. She just seemed very odd. Well, against our better judgement we let her attend school and about an hour in to it I got a call from her teacher saying to come quick. I ran..

When I got there, soph was really out of it. Her lips were blue-ish, she was having trouble walking and talking.. Very weird. I called her oncologist thinking that this was something very specific. Perhaps a weird drug side effect or something.. But they ended up being as stumped as I was. That didn’t really make me feel any better..

So, long story short, she ended up having to get a bunch of cardiology tests.. I guess the symptoms led them to believe that her heart was the culprit.. Something called left ventricular hypotropy or something.. I’m sure I’m not saying or spelling that right.. But the idea was that it was some side effect of the chemo. Had to have a few EKG’s a few ECG’s and a few other things over a couple month period.. Well, turned out the ticker was in okay shape. The tests were inconsistent and the cardiologist decided that instead of pressing the issue that she should have regular cardio checkups every few months and leave it at that.. So I suppose that is good. We never found out what caused the mystery illness, but it hasn’t happens since, so again.. Best to leave well enough alone. I guess..

That also lead to us seeing an ENT doctor. (the kind that work on ears, noses and throats, not the kind that work on the ancient tree people.) and that lead to the nasal steroid because of problems breathing due to tonsils and adenoids, not bad enough to require surgery yet, thankfully.. Anyhow, one thing leads to another and as far as it sits now, the docs are just gonna ‘keep an eye’ on all of that stuff as apparently none of it poses any immediate threat. Good news, I suppose.

Beyond that, things have been pretty smooth. She seems to like pre-school a lot. Her hair is growing back fast and spring is on the way, so hell, what do we really have to complain about, right?

Tuesday will mark the start of the next ‘hell week(s)’. Up to Denver for her next spinal tap, infusion and big ugly steroid burst. Her birthday is just one week away, and it sucks that she will be feeling pretty shitty for that.. But it’s only one week out of 11 for that junk.. Better than every 14 days like it was at the beginning. MUCH better.

So, that about sums up the recent goings on. I’ll likely post some photos of the procedure on Tuesday and definitely post some pics on her birthday. Gonna be the big #5!!

Damn kids.. Growing up too fast..

Goodnight, all. Until next time, be well.