Nico developed blisters on his lips last week, which is nothing new. He gets mouth sores often, and that is pretty common side effect of chemo from what I understand. These sores were different though. They kept getting bigger and then they started to form scabs (or something like that). We were just watching him for a couple of days, but things spiraled on Friday night. He stopped eating, stopped drinking, stopped walking, and started to incessantly whine and cry. He had a low-grade fever and complained he was tired. “I want to go to bed” sent us into a tizzy. Coming from Nico, that comment indicates that something is very, very wrong. We took him to the ER and found his blood counts are pretty much as low as they have ever been.
We are staying in the hospital for now, and we could be here for a while. Our doctor said it could be a couple of weeks. They have suggested he might need a blood transfusion. It was offered today since his numbers are low enough to justify it. But we wanted to wait on his next set of labs (tonight). They have also suggested he might require IV narcotics (a pain pump that would either deliver a continuous dose or allow him to dose himself on demand). Currently he is getting Oxycodone every four hours, IV fluids and IV antibiotics every six hours. He has not been able to eat or drink even though he is desperate to do so. His attempts end in sobs. His lips bleed if he opens his mouth or smiles.
Normally Nico just carries on, but yesterday he seemed really down. He had overheard our discussions with the doctors and determined that the “little yellow pills” caused his mouth sores (that is what everyone thought at first, but our primary oncologist later definitively squashed that). Nico told me, “My lips won’t be normal again until I am six.” When I told him the sores were from a virus and would start to clear up in a few days, he seemed very relieved. I think he has started to count down our treatment-sentence in his own way (and without actually knowing when it is supposed to end).
Nico’s ability to fight off any type of infection is virtually nonexistent right now. The doctors suspect the sores span the length of his GI tract. Plus, he cannot hydrate himself. So sending him home is admittedly a bad idea. Jeff and I are probably more calm this hospitalization than any other. It just so happened that our primary attending was on-call this weekend. We had another long, long talk, and I am really glad that he does not bill by the hour. There were many factors that lead to Nico’s crash, but the final straw was a virus (probably coxsackie). I think there will be changes to how we resume chemo once we are able to do so. That is a different post though, so I will follow up on that later.
These medical issues make resuming work especially difficult, and I am actually one week into a new job now. That part is going to be tricky, but I will figure it out. Nico’s birthday is in two weeks, and we have reserved a pirate ship to take him and his classmates around the bay. Our hospital room looks out over the inner harbor, and in the mornings we look at the view and imagine floating away in our boat.
Pray for smooth sailing.