Lissa’s blood counts were looking so healthy when she went in to the doctor yesterday, that they’ve increased the dosages on her medications again.
Confessions of a Creataholic
Lissa had her regularly scheduled (quarterly) spinal tap yesterday and everything looked fine.
Lissa got her last dose of the chemo she’s been on most recently today. The standard procedure with this one is to keep boosting the dosage each time you administer it until nasty side-effects show up, and then you know how much the patient can take, and you only give them that much for the remaining treatments.
Her doctor reported that she is now his record setter. Her dosage was boosted every single time it was administered — he has never given any kid so much of this particular medication before.
He says its practically impossible that she won’t develop any of the usual side-effects this time… but then, he thought it was pretty impossible she wouldn’t develop them last time either, so he doesn’t know what to tell me to expect.
Either way they will not be giving it to her again, and in two and a half weeks she will be starting the maintenance phase of her treatment.
(She sure felt miserable after her treatment today. Even though she hasn’t had the *predicted* side-effects yet, the stuff always seems to make her very, very queasy.)
Lissa’s doctor is no longer pleased by her ability to tolerate chemo…
…he is *astonished*.
Wednesday night we got a call telling us that although they had scheduled us for a clinic visit, it was a mistake, and Lissa was actually due for another spinal tap. Fortunately I had an opportunity to pick her up some new and very nifty dry-erase markers to use on her dry-erase board, to distract her from the unfairness of that particular change of plans.
So yesterday morning, brand new markers packed away in her backpack, we headed into town through fog so thick that I accidentally turned off the highway onto an on ramp at one point. Fortunately nobody uses that on ramp in the morning, and I had no probablem getting turned around and back on track. The fog caused quite a few traffic delays on the way there, and we were 20 minutes late. Then, after we finally got there there, we had to wait for two younger kids to have their procedures first, so it ended up being our second longest wait to date.
(Lissa says she likes the generic term ‘procedure’ much better than official ‘lumbar puncture’ which is too hard to remember, or the colloquial ‘spinal tap’ which sounds too scary.)
As usual the waiting was the worst part. Lissa and I ate at the Hospital Cafeteria afterwards, and she even got to play in on the playground in the courtyard for a bit. Traffic ran so smoothly on the way back that Lissa was considerably startled to look up from her drawing recognize the turn-off to home.
She’s gotten quite used to taking medications and is very well behaved about it all, but we’ve got six different bottles with stuff going right now, all being handed out on a different schedule, and I’m finding it a bit of a challenge to keep track of them all.
Having completed four back-to-back spinal taps on the previous four Fridays, last Friday we just had a clinic appointment. I prepared for it the same as I did the previous clinic appointments by putting “magic cream” on Lissa’s port, so that she wouldn’t feel the poke when they accessed it. Only they didn’t access her port. They told me (after I got there) that they won’t go through the port when she doesn’t have any medication she’s supposed to get that week. If they are just doing blood tests, she’s to go to the lab (before arriving at the appointment, please!) where they poke her with a needle in the usual way.
Lissa doesn’t like getting poked with needles. Lissa really doesn’t like getting poked with needles. She tells herself over and over on the way there “but it won’t matter, because the cream makes it so I can’t feel it, so it will be okay.” You can probably imagine her reaction to being told that she was going to be poked somewhere else, where there was no cream.
I was a bit irritated to have all this sprung on us after we got there, (not to mention being told to go to “the lab” and when I saw no signs directing me to “the lab” going back and asking what signs I was supposed to be following, and they repeated “the lab, it’s right there” and nary a mention of “outpatient services” which is what the signs actually said) so I just let her scream and cry and freak while I sat there like a lump until the poor person who was supposed to be drawing her blood finally asked me for assistance — at which point I stepped in and was firm and no-nonsense, and in a very short time had Lissa sitting still and getting her blood drawn — but I just was feeling very ornery about it all: they were the ones who didn’t warn us in advance, so it seemed only fair that they should have to deal with the inevitable hysterics. (Only, of course, they couldn’t, and I could, and it needed to be done.)
And that’s all that happened. After the blood counts came back from the lab I was told “counts are good, come back next week.” The doctor didn’t even look at her. I stopped at Walmart on the way home, and bought her some hats, because I was feeling at that point like we had gone through a whole lot of bother and had essentially nothing to show for it.
The doctor says that officially he has to wait until the tests come back from the lab, but it’s pretty rare for a count of ‘I couldn’t find anything‘ not to be duplicated. So Lissa’s cancer is in all likelihood ‘in remission’. What that means is that they can’t find any, so it’s obviously not doing anything nasty to her.
It doesn’t mean that its gone, because current technology does not enable us to verify that.
In the next stage, Consolidation, she gets a series of four weekly spinal taps (the first one was today), so that they can put chemo in her spinal fluid. Apparently the plan is to make sure that no cancer cells decide to ‘hide out’ in her brain, now that we’ve made the rest of her body so inhospitable.
The doctor says that this phase is a nice break for the kids, as there are essentially no medication side effects to worry about.