be here now

I don’t have a lot to share tonight other than that we’re pretty scared and trying not to be. Words like “relapse” have entered the picture, and while there is no solid evidence of this so far, there are lab techs coming in on the weekend to try to complete in two days what normally takes much longer because they want to make sure Caemon’s JMML mutation is gone. They want to make sure the immature cells his marrow is producing aren’t leukemic. The doctors are guessing because no one can quite figure out what is going on with our sweet boy.

Today, Caemon weighed 17 kilos–approximately 37 pounds. He’s usually closer to 14 kilos. He is retaining so much fluid that he is hardly recognizable. He is uncomfortable, much like a very pregnant woman might be. Still, he felt better more often today than yesterday. He played in the morning and this evening, he played with playdough for well over an hour. He even recreated some of the foods he likes to make at home. Unfortunately, he’s not actually eating more than a bite or two of food each day.

He also can’t hold onto platelets. His body seems to have developed an immune response to them in that it may be attacking any new platelets that enter. The blood banks are working to find specially matched platelets in hopes that he can get a boost until his body starts making them. His neutrophils dropped today too, down below 500. He is neutropenic again. This can be the sign of an infection. This is honestly what we’re hoping for.

There are possibilities of viruses lurking, of other strange phenomena, and we’re clinging to that, but it’s so hard to know what we are facing. Tomorrow we’re hoping for results on his bone marrow, to learn how much of the donor’s marrow has engrafted. They can’t take any steps until we learn more about that. We’re just trying to live in each moment, to soak up every bit of him, to give him every ounce of strength we’ve got.