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.

Infusion #2

Things went much faster this time around, largely because this wasn't a set of appointments wedged into already full-up schedules less than 24 hours ahead of time. We checked in about 1:30, and Rob was called in for his first stop (blood draw) at just a smidge after 2:30, which was his actual appointment time. We got out of that, were called back for the appointment with Dr. Puzanov less than five minutes later, filled out the various forms they make Rob do every time. Spent some time with Dr. Puzanov going over the symptoms from last week, which he opines might actually have been a straight-up reaction to the MPDL drug, rather than an interaction of drug and virus. He also firmly agrees that the increase in tumor size is inflammation and a good sign. Actually much of his visit could be summarized as "Please, please, please don't panic and leave the study! It's fine, I promise!" Rob and I found this pretty funny, because we weren't even considering leaving the study as an option at this point.

After Puzanov it was time to go up to the infusion clinic. Again, things were much quicker this time, because we were part of the original schedule, rather than wedged in at at the last second. Infusion time is still an hour (plus 15 minutes either side for IV fussing), but we only had to wait an hour before they did the final blood draw and let us go this time. I was also able to run over to the hospital cafeteria and grab some food for both of us, since Rob had been fasting for the first blood draw, and I hadn't had much because it seemed cruel to be munching in front of him if he couldn't eat. The cafeteria is pretty decent as hospital cafeterias go, and actually had decent sushi in their refridgerator case (cooked sushi, I'm not that much of a daredevil!)

The whole thing finished about 7pm, and we were able to hit the road home in time to get home before midnight. The hour time change here to there is really nice in the morning when heading down, less so coming back home.

So far no side-effects once again. If last week is a repeating side effect, I guess we'll find out in nine days or so.

In other news, the kids have now had their first two days of school. Aaron is really liking his classes and teachers so far, and doesn't seem to share any classes with the kids who were pestering him last year (Yay!). Robbie has no complaints, but I've already gotten an e-mail from his math teacher about him sleeping in class. Their friend Samuel will be able to drop by tomorrow and play for the first time in over a year (he lives 2 hours away), so both of them are very excited for this weekend.

Plans for the week

Today is/was Rob's first full day back at work. He's not quite at the end of the day yet, but seems to be chugging along with no more complaint than a slight tension headache. Go Rob!

Tomorrow is also work, but he'll be cutting out a little early for his next appointment with the urologist. We don't expect any new information from this one, just a recheck to make sure everything is continuing to heal post-surgically. Also, Dr. P is supposed to be asking his friends at NIH about any other interesting studies being done with RCC in case the ones we're already pursuing don't pan out.

Wednesday we head out for Vanderbilt so they can evaluate Rob. We've gone back and forth with them a couple of times on this, where we thought we weren't going, because the study was closed, but then they called back and said we should come ahead. So we're less confident than before about Rob getting into the study, but it's apparently still possible. Dr. Rez is also looking into University of Chicago, as there is apparently another study recruiting patients there.

The more common name for the study drug we're looking at here appears to be PD-1 or PDL-1, rather than PLN1 - I'm not sure if that's me mishearing Dr. Rez, or an alternate name for the drug. The ASCO meeting presentation on it was supposed to be today. I'm hoping that one or another of the doctors we'll be seeing this week can tell us something of those results.

This is also the boys' last week of school (at least until they start up again on July 31 -short summer). They'll be on their own a lot next week, since Rob will be back at work, and I'll be in Okinawa, but the week after their Uncle Doug is coming (Thanks Doug!), which should help a lot. Fortunately at 15 and 13, they're capable of looking out for themselves during the day pretty well. They're both reacting to Rob's cancer in their own way - Robbie in the very helpful mode of suddenly taking his homework and responsibilities much more seriously. Actually, it's so helpful that I have to keep reminding myself that it is a stress response, and I need to give him attention and support too. Aaron seems to be reacting through his digestion, as always. He's been having a lot of morning nausea and vomiting, and then this morning, when it seemed like we had that under some control, he started having esophageal spasms - basically nasty cramping chest pains that would double him over. Fortunately they're basically benign - really uncomfortable but nothing that's doing harm. Suggested treatment from the pediatrician was ibuprofen and either cold or warm drinks - whichever better soothed the spasms down (cold seems to be doing the trick, so Brazilian frozen limeade has been most of his calorie consumption today, as solid food doesn't go down well unless really thoroughly chewed to a pulp).

For the curious: 5 T lime juice, 5 T sugar, 1 c. light coconut milk, 2 c. crushed ice: stick in a blender until smooth - serves 2.

Also this week, I need to set up stuff for Art on the Parish Green, which will happen while I'm gone. Rob will be manning the booth, so I need to set up everything I can ahead of time. Plus packing, getting some Yen, and all the other stuff that goes along with an overseas trip. Busy, busy week.

Creepy Crawlies!

We have acquired a new pet.

Meet Ao!

She arrived about three weeks ago (so she's hardly news to some of you), but I thought I should bring it up here.

Ao is a Northern blue-tongue skink. She's about 18" long, extremely omnivorous, and pretty friendly as reptiles go. She's Aaron's first reptile acquisition (he's been agitating for a snake for years). He's in love. The first couple of days he barely came out of his room, instead hauling everything he wanted to do up there, so he could watch her.

Working with Ao has been a process of discovery for all of us. Rob discovered that even toothless reptiles will bite when frightened (and can bite quite hard). Mommy has discovered that skinks like earthworms - and toes look like earthworms - shoes are now mandatory when the skink is roaming! Aaron has been enjoying feeding her various foods to see which she likes - so far everything but bok choy, but she has a strong preference for moving food. He has discovered that live crickets do not make good sleeping companions (even when appropriately contained), so the live cricket portions of Ao's diet may be limited in the future.

After a couple weeks of being shy and scared, Ao has definitely gotten used to me (I can now pick her up and put her on my forearm without her hissing or trying to escape at all), and is getting more used to Aaron. I think his smaller shakier hands are a little more scary to her, and since I have to pick her up to give her to him, she automatically gets contact with me every time she gets contact with him. Blue-tongues are supposed to be able to distinguish people, and Ao's behavior so far bears that out - she still gets alarmed fairly easily by Rob and Robbie.

All in all, having a reptile in the house has been a lot more fascinating than I had thought it would be. I'm getting fond of Ao pretty fast, and while I was expecting Aaron to love her, I wasn't expecting to be getting attached myself. I may be sad if he takes her with him when he goes off to college in another eight years or so (skink lifespan 20-30 years!).