Home bound no more, maybe

Posted by Mommy

I am glad to say after being stuck at home, inside for almost a month now, CJ’s ANC has finally came up to 1500!! I guess they found the magic dose of chemo last time, enough to do the job, but not too much to make his counts too low in the danger zone.

We had another long day at the doctor today. We started at the clinic at 8:00 am for his regular appointment. CJ got his Vincristine though his port at clinic. Then with his port still accessed we went to Kosair for a sleepy test as CJ likes to call it or a spinal tap in more technical terms, with his Methyltrexate.

CJ seemed to be in a very good mood all morning. He wasn’t happy about getting his port accessed but accepted it, and then after he got his chemo at the clinic they gave him chemo beads. They have a long sting and lots of beads that represent different things. They include letter beads with his name, one for getting his port in, one for losing his hair, one for getting his finger poked, and one for getting chemo. From now on every time he gets anything done, such as chemo, Peg shots, or a spinal taps he gets beads to add to his chain. It kind of gives the kids something to look forward to since they have to come back so often.

CJ likes to go over to the hospital for a couple of reasons. First we park in Kosair’s garage and his gets to ride in his cart over the walk way. In CJ terms we take the long walk, but truth be known, I take the long walk while he rides in the cart. Next, every time we go register for an outpatient procedure, we go to the vending machines and he gets to pick out a drink and a snack to take with him. He loves pushing the buttons, getting the snacks out by himself, and then if change comes out he is amazed. The funniest part is that I can pack his lunch box full of snacks, but they are not good enough unless they come out of the machine, even if it is the same snack.

Finally spinal tap went fine. CJ was calmer than usual during the procedure. He woke up fine as usual; a happy drunk is the best way to describe him. The only thing they did different is not only did he get the Methyltrexate during the spinal tap, but also in his port after the spinal tap was over. After five hours at the doctor/hospital we left to go home. On the way home CJ got sick. This is the first time the chemo has made him sick, but it is also the first time he has done the Methyltrexate and Vincristine plus a spinal tap on an empty stomach. He has had a hard time keeping things down since. As for my list of job titles, puke catcher is added at least for the day. I feel so bad for the poor guy, he is finally able to leave the house and he gets sick. Here is hoping for a feeling good weekend, so this being sick doesn’t last.