Another Week
Well, it's been a week since our last update and Ryan is still stuck in the hospital. What we hoped would be a quick visit last weekend due to a fever turned into a whole week of waiting for his counts to go up. The fever came down over the weekend, and nothing came up on the cultures they took (any time he has a fever they will do this to check for infection). However, until his ANC comes up significantly for multiple days in a row, they have to keep him here to monitor him and give him antibiotics in case there is an infection. Unfortunately, his ANC has been hanging out at zero the whole week so it's just been a waiting game. (As a reminder, ANC stands for absolute neutrophil count - an estimate of the body's ability to fight infections.)
He spiked another low fever on Thursday that has since gone down, so they did more cultures to see if anything is going on. They typically expect to see any growth in those within 48 hours if there is an infection. Even if nothing comes up, though, his immune system is just so weak that any little thing could throw it off. One of the nurses explained that fevers are common in this situation because that's the only tool the body has left to fight with.
Today (Saturday) started out as a rough day for Ryan. His platelets were low so they gave him a transfusion, which he reacted poorly to; he ended up with quite a bit of nausea and lightheadedness, along with a skin rash. They gave him some Benadryl and he got some sleep, after which thankfully those side effects have all subsided.
As you would imagine, the events of this week caused the next treatment phase (Interim Maintenance 1) to be pushed to February 22. So far, every time I've asked the doctor, she has reassured us that this waiting game for his counts to come up is very much in the common realm of things they typically see with ALL patients. After enduring the first two phases of treatment his body just needs more time to bounce back.
The nurses told us that when they have little kids who are dealing with this, they tell them to do an "ANC dance" - like a rain dance, but instead of summoning rainfall you summon your bone marrow to start making neutrophils again. So that's what I'm asking of all of you. Please do an ANC dance for Ryan so he can come home soon. The sillier the better. We greatly appreciate it! Sending much love to you all this Valentine's Day weekend. <3