forks in the road

I have grown quite weary of doctors coming in and either asking us to have a seat, grabbing a chair themselves, or–the worst of all–inviting us, along with a team of other doctors and the social worker, to come to a conference room. Today, however, we found ourselves experiencing the dreaded conference room. This morning, Caemon had a bone marrow biopsy. His doctor wanted to make sure his leukemia wasn’t transitioning into something else, namely, AML–a different type of leukemia.

We sat down with her yesterday as well (and she brought her own chair, which is also cause for concern), and she gave us details on JMML and its unpredictable nature. We set a course of action but with the stipulation that if the bone marrow revealed the signs of AML developing, that course of action would be changed.

Because it looks like this is where we are headed, and because this disease appears to be incredibly aggressive, Caemon is going to be starting some more serious chemotherapy. Until now, his doctor has kept him on very mild chemo in an effort to see what his body can handle and to determine just how much he needs to get healthy. While he has responded to each therapy to some degree, neither has left us with the type of results his doctor wants to see, and so it is time to step up the treatment. She told us over and over that she watches him for her cues to determine what is next, and right now, it feels like he’s pushing her against a wall, and she’s got to push back with something just as aggressive.

Our ultimate goal is still a bone marrow transplant–still the sooner the better. However, now instead of looking at mild therapy to keep the disease from progressing, we’re looking at heavy chemo to try to get on top of the disease, to try to beat it back and to go into the transplant as healthy as possible.

Unfortunately, the need for more aggressive treatment is becoming clearer. Caemon is having difficulty turning his head because his lymph nodes in his neck are so swollen. He is in a fair amount of pain, and he is beginning to look sicker again. Tonight, he is resting comfortably, but with the help of a small dose of morphine. This fact alone is a stark reminder of what we’re dealing with.

Tomorrow his therapy begins. He will be on a five-day continuous infusion of three chemo medications. There will be many more side effects, and while we know his team will do their best to manage these, there is only so much they can do. We have decided we’ll shave his head in lieu of letting his hair fall out, and our doctor informed us that one of our favorite nurses is known for his love of shaving the kids’ heads. As soon as he’s working again, we’re on. The rest of the symptoms, we’ll face as they come. But, oh, how I wish I could go through this for him.

As hard as all of this is to take in, I also have to share something lovely. As I have mentioned before, Caemon has been sequestered to his room, and any of the medical professionals entering have had to wear masks. Yesterday, the resident on call came in wearing no mask. He said to Caemon, “Caemon, did you notice I’m not wearing a mask? Do you know why? Your rhinovirus test came back negative!” This means the world when you’re in the hospital for weeks and even months at a time. Now Caemon gets to leave his room. He can go to the play room and enjoy being a kid, he can get a little fresh air in the courtyard on the next floor down, he can walk out and see people (and they have so enjoyed seeing him), but best of all, he can drive a little car all around his floor of the hospital–even under the influence of morphine. The joy on his face as he cruises down the hall is something that keeps us all going. Whether he will want to do this in the coming days, I do not know, but I do know his little car is parked in front of his door, waiting for his next ride.