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.
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*.
I’m hoping that ‘pretty normal with these kids, especially in winter’ wasn’t supposed to be a code phrase meaning ‘it will happen about every other week’.
I’m also hoping the next time Lissa gets feverish, it happens during regular clinic hours. The hem/onc people are used to this– they handle it quicker, and with less fuss and paperwork than down in the Emergency room.
Lissa was impressed by the guy who drew her blood down there though. She said he was so good at it, that she couldn’t feel him poke her arm. (She wasn’t supposed to get poked in the arm at all, they were supposed to go through her port — but the first set of blood counts came back from the lab with a completely unbelievable result, and so they needed to do them over… and by that time, she was already getting her antibiotics through her port. So…)
The home care nurse has taught me how to administer home infusions of antibiotics to Lissa through her access port. Not only did I administer her medication, but I ‘de-accessed’ the port (removed the needle connecting the port, which is under the skin, with the infusion tubing.) If she needs antibiotics again, I will still have to go into the hospital to have the port acessed, but I can give her any additional treatments myself.
…making an unscheduled visit to the hospital.
Lissa started coughing yesterday, and develloped a fever. This morning it went up to 101, which is considered an emergency in Leukemia patients, and when I called her doctor I was told to bring her in immediately so she could be given antibiotics through her access port.
She will be recieving additional treatments tomorrow and the next day from a home health care nurse.
The hem/onc nurses told that this sort of thing was ‘pretty normal with these kids, especially in winter’. It’s not considered particularly dangerous… as long as it is handled promtly. Which it was.
Boyd got an email yesterday saying that now that he was a wage earner instead of salaried (due to new federal regulations imposed last year, that his company overlooked), his base pay would be 27% lower than what it had been previously. When he called they made noises on the order of ‘no, we aren’t REALLY going to cut your pay, the lower rate is just a placeholder while we get things sorted, and we’ll make up the difference in bonuses’.
Boyd’s response was: ‘Great, glad to hear it. As soon as you get that to me in writing, I will go to work for you again.’
Lissa’s been doing really well, though. (Hopefully I haven’t screwed that up by letting her attend a New Year’s party last night.)
Lissa started the phase of treatment called “Delayed Intensification” yesterday. I hope she sails through it with the same flying colors she did all the earlier phases. Along with the spinal tap and other tests they gave her three different kinds of “chemo”, which meant another fairly long day, (left home at 7:20 and got home at 2:40). I started getting an ear-ache on wednesday, but because of spending most of yesterday in the hospital with Lissa, didn’t manage to see my own doctor so he could take a look until today. (Better him looking than me — he said the ear canal is completely swollen up and covered with pus — sounds icky!)
Lissa has two appointments at the clinic next week, plus she’s due to have her teeth cleaned. Poor kid. It never rains but it pours.
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.