back to the hospital

As much as we had hoped to stay home, it really was short-lived. I wanted to be able to write about Caemon’s wonderful birthday before anything else, but the fact is, we’re back in the hospital, and this time for a lengthier stay.

Caemon is not responding as well to his treatment as his doctors had hoped. His white blood cell counts have gone up while his platelets continue to descend. We have had to come back for multiple platelet transfusions, and when we returned for the last one, his doctors let me know that we would need to be readmitted so that we can step up his chemotherapy. He will be moving from the oral, mild chemo he was taking to a lower dose of the next step up–in IV form. We don’t know yet when this will start because we’re also dealing with helping him through the worst of his cold, working on clearing up some infections, and generally, improving his health a bit so that he can handle more chemo. When he does start his new chemotherapy, it will take about two weeks, after which they will want to monitor him for another week or so. In other words, we’re going to be here for a good long time.

To make it all just a bit more difficult, Jodi is sick with a cold and cannot come to the hospital until she is well. This is all so hard. We hope she will join us in just a couple of days. In the meantime, we’re grateful to those who are coming to our rescue on both ends of this.

Caemon is doing okay. He had a new PICC line put in today, which meant he had to go under general anesthesia again. He handled it well, and while he’s now dealing with a worsening cold (and his corresponding respiratory issues), the doctors are acting quickly to try to prevent a repeat of our last stay in the pediatric ICU. Only time will tell, of course.

For now, we’re so grateful to our generous friends, family, and colleagues who are trying to make this easier on us–and to generous strangers who are reaching out. We’re grateful for our amazing hospital staff. Caemon, nay, our entire family, are all in very good hands here.

On a final note, it seems that Caemon’s HLA typing (the typing that reveals his type of bone marrow) has been completed, and the bone marrow transplant team have begun their preliminary search. They have cast the first net. We do not know what this will reveal, but we’ve got to have some hope here. What else is there, really, but hope?

I’ll get back to the birthday celebration post a bit later. We could stand to reflect on a little joy. 🙂