waiting out the weather

I find myself using a lot of mountain-climbing metaphors when I talk about Caemon’s illness. I haven’t ever climbed a mountain, but the mental and physical demands, the hazards and potential for mishaps, and of course the glorious summit and descent (during which there is ample danger as well) seem to fit. As we have reached the end of Caemon’s chemotherapy and are headed toward his bone marrow transplant, I keep imagining us at base camp. We’re getting oriented, making plans, studying our maps and checking our supplies. We are all ready to go up the mountain.

But this weekend, a blizzard has come through, and it’s just not safe to climb.

Tomorrow, Caemon was scheduled to enter the Bone Marrow Transplant Unit. Unfortunately, on Thursday night, he spiked a fever. Another came on Friday night, and yet another on Saturday night. The BMT doctors don’t want Caemon starting the transplant regimen until he is fever-free for 48-72 hours. He can only be admitted on a Sunday or Monday because certain tests must be sent away on certain days to certain labs, and any other schedule would make this impossible. Therefore, we learned today that our move to BMT won’t be delayed by just a few days. It will be a full week, perhaps two if Caemon doesn’t stop having fevers.

Our boy’s body is telling us he is just not ready for this yet. Some sort of infection has entered his system. Many of his blood counts are on the decline again, particularly his neutrophils (those white blood cells that make up the body’s defense against infection). At this point, we want to see cell recovery, not decline, and decline of most of these is indicative of fever and infection.

The past couple of days have been spent trying to figure out what that infection might be because the fevers are his only semi-consistant symptom (and even those only show up once a day). He has had blood cultures taken, plenty of physical exams, and then today, he had both an eye exam and a CT scan. The last of these is an attempt to smoke out any fungal infections that may be hiding inside Caemon’s body, particularly his organs like his lungs or liver or spleen. So many of these procedures are no small matter. The CT scan, for instance, required general anesthesia and recovery in the ICU (the first because he would never have been able to lie still for twenty minutes in a terrifying room with a tunnel, and the second because he has to recover in isolation due to his immunocompromised state). Through it all, though, he maintained quite a bit of fire and spunk. He played more today, and he seemed to feel quite good. So far, as of 11:17 tonight, he has not had another fever.

There is still the chance that this is just a viral infection–maybe his body remembering a cold he once had and reliving it a little (as one of his BMT doctors described), or one of us may be carrying something that our bodies don’t even detect because of our immunity, but his body is reacting. Another doctor suggested that sometimes neutropenic kids react to bacteria in response to things as simple as brushing teeth. It is so hard to say right now. For a day or two, the poor kid had a sore throat, and we thought that was the issue, but it went away too.

Our goal is to somehow keep Caemon fever-free over the next week. If he begins to recover, and his counts start to rise again, we will enter the BMT unit next Sunday or Monday. While the doctors will attempt to get the donor to reschedule her donation, if she cannot, her marrow will be harvested on the originally scheduled date, and it will be cryopreserved (frozen) such that it can be used when we need it. While this isn’t ideal, the doctors have assured us that although freezing can reduce the number of cells, because Caemon is so small and doesn’t actually require all the marrow that is harvested, any reduction in cells should not be an issue in the least. Therefore, while we certainly hope the donor will reschedule, we are confident that this backup plan is a sound one.

It seems, then, that we have our plan in place. Tomorrow, we should find out whether there are any fungi making themselves at home in Caemon. My prediction is no. I think he just likes to throw us curve balls here and there. He’s that kind of a boy. This does give us some time to slowly prepare ourselves for next week’s move to the transplant unit. There are things that have to go home, things that have to come from home to here. We have to wash all of his clothes and seal them up in plastic bags. We have to thoroughly clean his toys and anything else we plan to bring in. We need very specific supplies, which have to be prepared in very specific ways, and now, even though we may not go home, we can get those ready. Sometimes riding out the storm at base camp is the best thing one can do. It is our only option right now as we ready ourselves for this climb up our very own Everest.

For those who have been planning to participate in our Gathering of Light event, please know that this is still on. Now more than ever we need all the light we can bring to Caemon in preparation for the journey ahead.