Update on Nicholas

Nicholas is on a protocol that calls for him to get chemotherapy every three weeks for twenty-one weeks, and beginning week four, chemotherapy every week day for five weeks. Surgery to resect the tumor comes at week thirteen.

He has been through four rounds of chemo, and all of the radiation. The chemo is not as bad as you might think. It takes three days to infuse, so that means a little more than three days in the hospital every three weeks. Twice he’s had to have doxyrubicin (AKA “red-devil” or “the red”). The red takes twenty-four hours to infuse, and he has to have two of them each time. It makes him a little queasy, but not as sick as it seems to make other patients. And it made his hair fall out. Not all of his hair, mind you. He still has some wispy bits here and there that he won’t let us shave. The red is photo-sensitive, so you have to shield it from light. That makes it seem so sinister.

He’s also had to have isofosfamide (AKA “the white” although it’s clear). The white takes three hours to infuse, and he gets three doses 24 hours apart. It doesn’t make him sick much at all, but it requires that he be on a constant fluid supply so it will flush from his system. This means that he has to pee a lot. And we have to measure it. And he has a hard time getting around with the IV pole, so the parent who stay with him (usually me) has to help him. At all hours of the night. It is exhausting, and by the time we get home all we ant to do is sleep and sleep.

The radiation was much easier. The hardest part was driving into Birmingham every day with gas prices the way they are. But the Wallace Tumor Institute has free parking for radiaton oncology patients right at the door, so that’s nice. Nick liked the radiation treatments because they never stuck him with anything and never made him take any nasty medicine. Plus, there were animals there a lot of the time. Therapy animals from Hand in Paw. And their people.

The radiation oncologist kept saying that the radiation would irritate his skin. It never bothered him unil, close to the end. They put some targets on his arm so they could line up the equipment. Toward the end, they had to put a tegaderm patch over the targets, and for whatever reason, the skin under that patch burned (like a sunburn). Other than that, radiation was no problem.

The purpose of these treatments is to shrink the tumor to where it is small enough to remove with minimal damage to Nick’s arm. Not that the tumor was huge. If it ha been on me, they would have just cut it out and that would have been that. But I’m huge, and Nicholas is tiny.

I don’t know how well the process has worked. He had an MRI last week, and his doctor said it shrank a little bit, so they are going ahead with the surgery.

We met with the surgeon–the same one who did the biopsy–and the surgery is scheduled for Thursday, July 3rd. It’s at UAB and not Children’s, and while I really would rather be at Children’s where we are familiar with everything, the surgeon does more surgeries at UAB, and his comfort is more important than ours. I say that without sarcasm or irony.

The surgeon did say that he may have to cut the flexor tendon on Nick’s hand in order to get the tumor out with a good negative margin. If he does, he’ll have to leave it cut until after chemo is done and do reconstruction afterward. Then there will be physical therapy after that. I’m not going to borrow trouble on this one. We will know for sure Thursday, and we will go from there.

Denise wondered if Nick needs PT for his hand if Blue Cross will pay for a wii. I kinda doubt it. I was thinking that piano lessons might be good.