baby steps

It has been a week since we learned of Caemon’s relapse, a week filled with so much concern for our sweet boy and far too little sleep, but every day we have bits of progress. I know many of you are concerned about him, so I’ve got some updates for you. It’s a lot of information, but I know you want to know. Please tell us if you have any questions.

Caemon has been on oxygen all week. He isn’t hooked up to a nasal canula or a mask. For kids his age, they start with what they call “blow-by,” which just consists of a tube wrapped in soft baby blankets so that kids can snuggle with it and have oxygen “blow by” their faces. It works rather well, but it means lots of repositioning throughout the night when he really needs it–and he has really needed it much of the week. After a chest x-ray last weekend, we learned that he had a lung infection, and shortly thereafter, some blood tests came back positive for CMV (a virus many of us carry without knowing it, and something that is typically only harmful to pregnant women and immunocompromised patients). The infection has meant more antibiotics and antivirals, visits from pulmonologists, and plenty of oxygen. For the past day or two, however, he has needed a little less and a little less, so we’re hopeful that this infection may be healing.

Much of the day, Caemon is sleeping right now, and he has done very little eating of late. When he does eat, he awakes with a serious craving, usually of the bread variety. However, the fact remains he isn’t taking in nearly enough calories, so we’re either looking at returning to IV nutrition. As hard as this is to fathom, the access to nutrition should help his body start to heal more easily, which is something we definitely need.

One of the most significant issues we have been facing is extreme swelling throughout Caemon’s body. Because of his enlarged liver and spleen, his belly is quite distended and uncomfortable. In fact, much of his little body is. His team is certainly working on helping him eliminate the extra fluid, but it has been a difficult balance between keeping him appropriately hydrated and keeping him free of excess fluid.

While we were to initially have his new donor cell infusion yesterday, his doctors opted to move this back to next Wednesday in an effort to protect his lungs. When the body has an infection like a lung infection, it is not uncommon for the newly-introduced donor cells to immediately migrate to that infection, causing significantly more inflammation, which is something he certainly doesn’t need at this time.

I won’t lie: all of this is extraordinarily hard. We don’t see a lot of our boy these days because he feels so miserable, and he’s on so much medication. He is requiring a continuous drip of pain medication again and must have Benadryl to prevent reactions to his nearly twice-daily infusions of blood products, so he sleeps a lot. Sleep is important for his body to heal though, and we encourage it the best we can despite missing hearing his sweet little voice and seeing his beautiful blue eyes. Harder still is that because he is so uncomfortable, we cannot really hold him anymore. He will, however, reach his arm out for us as though he is a grown man, and pull us into snuggle on his chest. He regularly tells us he loves us and strokes our faces. These are precious, precious moments.

Recently, we obtained a referral to an accupressurist here on staff who will be working with us on helping Caemon’s system function a little better to relieve some of his pain. This is something we are able to engage in with our son. It feels proactive, and it’s just another way in which we’re trying to approach his healing. While there aren’t a lot of alternative therapies we can entertain given his delicate state post-transplant, we can support his system, and that feels very powerful right now.

We are maintaining all the belief and hope we can here, and we have been working to create a very intentional positive space around him. We ask doctors and other medical professionals to have conversations about his health outside the room, and we reserve his space for exams, for talking to Caemon, for creating a healing space. We entertain stories of miracles and recovery and talk about his future photo album filled with images of five- and seven-and fourteen- and twenty-three-year-old Caemon. There are days when it seems we’re trying to convince everyone who enters the room that he can make it, that he can beat this, and there are other days when everyone who enters the room is utterly convinced that he is a boy capable of miracles, that he will make it through this. We obviously prefer the latter, but there is something about the act of convincing that does make us believe more strongly. He needs that from all of us.

  Snuggling Mama (Jodi) in his arms.

Snuggling Mommy (Timaree) in his arms.