Wednesday, November 05, 2014

Coming up on belief

Way back around infusion #3 (we're coming up on #8), Dr. Puzanov told us not to believe anything the CT scans showed us until week 18. This was in context of the tumor showing rapid growth during the early stages of treatment. That kind of expansion is normal, and even a good sign, since if the drug is working, the immune system attacks the tumor, and the tumor becomes inflamed. It's still pretty darned alarming to see a tumor that had been chugging along at about 3% a month for growth expand by 26% in three weeks.

So at the last CT scan (at infusion #6, the 15 week mark), the tumor showed no growth at all over the six week period. This is definitely a good sign, and we were excited about it - but still in the back of my mind is that little comment "Don't believe anything you see until week 18."

Well, week 18 was two weeks ago, but didn't come with a CT. A week from Thursday is our next infusion with a CT, marking week 21. I've got all my fingers and toes crossed - please let this be real, please let us have an actual tumor freeze. There's more to hope for from there - shrinkage is always to be desired - but a freeze is the first and most important thing.

Also hoping that Rob hasn't developed an allergy to the CT contrast dye. He had an interesting rash about 24 hours after his last CT, and no contrast dye will make tumor tracking definitely harder.

Life otherwise cranks on. After missing an awful lot of school to nausea the first few weeks, we got Aaron under enough control to remove the threat of the truancy people coming after us. And I, in a not so stellar mother moment, let things lie there from then until this last week. Aaron was still feeling crappy most mornings, and spending time lying down in the nurses office at least a couple mornings a week, but he wasn't missing school.

Then on Wednesday, he was feeling his usual moderately crappy getting ready for school, and threw up once before we headed out the door - so we brought a bowl along. And sitting in line to drop him off, he threw up again just as I was pulling forward to the drop-off zone, and I couldn't do it. I told him "This is ridiculous.", and pulled out of line, and we went to the pediatrician instead. I feel awful that it took that direct a reminder that we hadn't fixed the problem, just the legal consequences of the problem, to get me back in gear.

So, we still have no real answers, but Aaron has a battery of blood tests being run, a visit to an ENT scheduled this week (his dentist is seeing signs of too much open mouth breathing, and suspects issues there may lead to mucous, and a hyper gag reflex), and a visit to a counselor scheduled for the week following, since stress and school are definitely a major factor in this. During vacations, the rate of morning nausea drops precipitously - it doesn't go away altogether, but it becomes unusual, rather than 2-3 times a week.

I suspect, based on the last 14 years, that Aaron has a series of things going on, rather than a singular cause. He's always had a sensitive stomach and a hyper gag reflex, right from birth. Add to that, Dad is pretty sure (and I concur) that he started having abdominal migraines about three years ago, a case of reflux, a large double-dose of stress (Rob's situation of course, and 8th grade is proving socially miserable, due to 8th grade boys being at their maximum level of asshole), and chronic insomnia (when lack of sleep will make all of the above worse), and you have an absolute recipe for misery. I'm hoping that if we chase several of these things, we may be able to crank down the physical response several notches.

Even if it means missing a little more school. After all, our last appointment with the family court for truancy issues turned out to be hilarious in retrospect. It was 3 years ago, when Aaron first started having morning nausea issues. They gave us an 8am court time, and Aaron helpfully demonstrated to the court why he was missing so much school by throwing up all over the courthouse. They really couldn't say too much after that. So we kind of got a mumbled "School is important. Try to get him there more often." and they sent us on our way, with no further action. It probably helps that his grades are consistently excellent, despite the missed classroom time. He just took his reading evaluation last month and topped the grade. Not just best for his class, best score they've ever had for an 8th grader.

Robbie is chugging along through 11th grade without much commentary from anyone. He's a great kid, and very smart, but we do wish he'd show a little something. Drive? Ambition? He seems very willing to meander gently along through life, enjoying his drawing without pushing to improve it particularly hard, and also without showing any real interest in anything else. It's a bit frustrating.

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