Post 7
It’s June 19th, a Friday, and Frank has been in the hospital for five days now.
We arrived here on Monday and got checked in. I’ve been feeling low-key constantly terrified for weeks now, and it was bizarre to me that staff greeted us here so enthusiastically. “The big day is here! You’re on your way!” I guess it’s important for them and for him to behave that way, no matter how they may each personally view the bone marrow transplant process, but I watched everything feeling like I’m a little bit insane. I should be excited, too, right? He’s starting the process of getting his life back, and this is what we want.
He got a picc line installed Monday afternoon. A picc line is kind of a permanent IV. The tubing goes through a vein up your arm and partially into the chest. They put this in to supplement the port he already has because, during transplant, they usually need more than one site to give him medications or IV fluids or nutrition. A regular IV isn’t a great option for this, because it has to be replaced every few days, and weakened transplant patients are very difficult to get a good stick on.
We knew what a picc line was because I had one myself when Frank was six months old. I was super sick, hospitalized with a staph infection and double pneumonia, and sent home with a picc line and IV antibiotics for seven weeks. He was not happy when he found out a few months ago he would need a picc line- he knew what it was, because I had told him, and the idea of it grossed him out. I eventually talked him into it. He’s 19, a fact I seem to have to remind people about a lot, since he’s still cared for by the pediatric team, and he legally consents to treatment himself.
His picc looks different from the one I had. His has two lumens, the ends dangling out of the dressing on the upper inside of his right arm. Mine was on my left, with only one lumen snug against my body.
Tuesday he started radiation. He and Darrel had come down here several times in the last few weeks for preparation, and a few of those appointments were for radiation. They make a mold of the body for the patient to lie down in so they will keep absolutely still during the procedure. I assumed, from what Darrel and Frank told me, that at least part of the purpose of this mold is to make the patient more comfortable.
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No, not so much. During the first radiation treatment Tuesday morning, I watched as they arranged Frank’s body in the mold, and placed a plastic mesh mask over his face that was screwed into place. The mask pressed right up against his face, so much so that he had mesh-face afterwards. And, about ten minutes in, Frank had a panic attack. Big time. I’ve never seen him this upset. They had to get his nurse to come down from the floor to give him an injection of Ativan.
The mold is hard plastic, and uncomfortable. He has to stay absolutely still, because the precision with which they radiate each part of his body is measured in millimeters. And the machine is LOUD. And everything is so close around him, especially the face mask.
And he needed to do this seven more times this week, for two hours at a time.
He has his last radiation treatment this afternoon. He’s currently sleeping. He’s been sleeping a lot the last few days. Fatigue is a side effect of radiation. He’s also started to feel occasional nausea, and his whole body itches, both of which are also side effects. He says that, other than that, he doesn’t feel bad. He just wishes they could do something about the itching. It’s not a allergy causing it, so antihistimines are of no help, and he’s not allowed to use any kind of lotion until he’s done with radiation altogether, because that could cause burns. So, while he’s awake, he lies here and tries not to scratch.
Tomorrow and Sunday, he gets massive amounts of chemotherapy. The transplant doctor says he will start to feel miserable by Sunday or Monday.
Tuesday is transplant day. He’ll get the transplant in the afternoon, in an IV bag. The donor goes in Tuesday morning to donate, because it has to be fresh. The only thing we currently know about the donor is that it is a woman, because someone at the clinic a couple of weeks ago referred to the donor using female pronouns. Frank and I both suspect she is an educator, because the transplant was postponed for a few weeks because of “scheduling issues for the donor”; we could easily see an educator wanting to finish the school year before going through the brutal donor process and needing to recover from that.
He’s awake now, and I’m trying to get him to eat something. His appetite has dramatically dropped since we arrived Monday. I suspect by the end of the weekend, he will be eating nothing and getting all his nutrition via IV.
