Mucositis (no fun)

We’ve been here a few days now, and Wes has improved consistently. He’s got oral mucositis, a common side-effect of chemo, particularly the high dose methotrexate that he’s receiving every couple of weeks. Mucositis causes sores and inflammation in tissues like the lining of the throat, mouth, tongue and lips. It’s not unexpected at this stage, but it is painful and there’s limited treatment options: fluids, antibiotics, rest, and time. We’ve done all four, and he’s progressing well.

The first 24 hours was especially rough. He was in a lot of pain, his face was swollen, and he could barely speak. His lips were so crusted over I was almost afraid to make him open them. He couldn’t take a drink, let alone eat. We gave him dilaudid, a fairly strong opiate, which gave me a chance to painlessly clean him up and after a long nap he woke up happy and demanding milk. I obliged of course.

The dilaudid helps a lot, easing his pain enough to drink, play a bit in the bed, and get good restful sleep.

Yesterday he visibly improved by the hour – he drank three cartons of milk, started eating dry Cheerios, and by nighttime we decided to try Tylenol instead of more dilaudid and he did just as well, a good sign that the pain is subsiding. I’ve been swabbing out his mouth, cleaning his lips, and keeping them moist with vaseline. At this point the only external sign is a split lip, not unusual for a toddler in wintertime.

Given his milk and water consumption they took him off the IV last night, the first step towards going home. He slept well, woke up gently, and he’s already finished a carton of milk.

I’m still not sure when we’re going home, but I suspect if not today then certainly tomorrow unless he takes an unlikely turn for the worse.

Update: I spoke too soon. We’re going home as soon as we have a ride! This kid is feeling great, as you can see below, and there’s really nothing we’re doing here we can’t do at home, in greater comfort.