we would like a flashlight now

I suppose any time I write about Caemon’s current condition, I should remember that there are varying degrees of sick and similar varying degrees of darkness. Right about now, we could stand any number of devices that might keep the light coming.

For the past two nights, Jodi and I have taken turns not getting sleep. Last night was my turn, so tonight I am ordered to sleep. Caemon has taken a bit of a downturn in a few different ways. The issue with his mucositis is more challenging as it continues to get more raw and angry. His throat has taken the worst of it, and the poor guy has a good deal of difficulty sleeping for any amount of time before the saliva he keeps saving starts to make him cough. He is not getting much uninterrupted sleep at all.

More challenging, now, are the fevers that keep finding him. Yesterday, he was sent for a CT scan to try to identify any fungal infections that might be lurking, but because he cannot be sedated in his current condition, we found ourselves trying to convince a three-year-old who feels miserable to hold completely still with his arms up over his head while being pushed through a tube with scary red lights for a good fifteen to twenty minutes. As you may have guessed, it didn’t go so well, despite our attempts at making it the most interesting thing in the world (and it was interesting until he had to be in it). We called it off. The fevers are persisting, though, and while his blood cultures aren’t growing anything, something is clearly going on. Caemon is now on broad-spectrum antibiotics and antifungals and may soon be placed on a stronger antiviral. If this seems like a lot, it is, and it’s actually only scratching the surface of what is being pumped into our boy.

The latest medication being hooked up to Caemon’s pumps is one meant to suppress VOD (venal-occlusive disease), the liver problem I mentioned previously. Unfortunately, Caemon’s bilirubin levels have continued to climb, he’s gaining weight somewhat rapidly due to fluid retention, and his liver, we learned today, has grown a bit. While this was hard to accept today, it is clear when looking at his jaundiced skin and eyes that his liver is not functioning properly. I won’t lie; this makes me very nervous, but the fact that his team is looking so vigilantly for any sign of issues of this nature tells me that we are in good hands and that if this is VOD, they have caught it in its very early stages and should be able to keep it from progressing dangerously.

Jodi and I have been very much on edge through all of this because there is so little we can do but hold our boy and give him our love and comfort. I know that giving that is significant, but it is hard not to feel helpless in these moments.

For the past three days, we have had a very special nurse friend with us (as Caemon’s nurse), which has been such a blessing. She has held all our hands through these past few days, helping keep us from falling. She reminded us today something that more than one nurse has said:  Kids who sail through transplant easily are the children they worry most about. We should see complications going through transplant because we are putting our child’s body through so many processes bodies are just not meant to see. One certainly doesn’t expect to climb Everest without some scrapes, maybe even some frostbite or windburn or even broken bones along the way. Perilous journeys are fraught with risks and stumbles and even the occasional fall, but we take them because they are worth it in the end. We just have to keep remembering that seeing our boy beyond these double doors, outside of this hospital, running around free of tubes and machines and endless medications is worth every sleepless night and every moment of worry.

So please, keep holding those flashlights and lanterns and torches. We need them to see the rocks in our path, to keep us from stumbling on this most arduous part of the climb.