Methotrexate, round 1

Much to everyone's surprise at clinic, Hope made counts Wednesday and was able to start the third phase of treatment. It was a looooong day: no eating or drinking because of her spinal tap with chemo that didn't happen until noon, and then a wait that lasted until 5 to get admitted on the inpatient side. But a much bumpier road was ahead.

They started her first (of four) 24-hour intermediate dose methotrexate infusion at about 10 pm. As anticipated she didn't eat all the next day, probably from the nausea, but she was in good spirits for the most part. 

Friday she still wasn't eating and started indicating that maybe her mouth was bothering her, and Saturday we saw a steady deterioration in her mood, energy, and wellness.

By Saturday night she had a full-blown case of mucositis, the most common and nasty side effect of methotrexate, and one that is even more likely for people with Ds. It's inflammation and sores in the mouth, lips, and throat. And for Hope it has been accompanied by a croupy cough that made sleep last night impossible without two nebulizer treatments and a dose of steroids - and morphine. 

Today we have a pain pump giving her continuous morphine and a button we can push if we think she needs more. It is helping but she can't drink, let alone eat. They will probably start IV nutrition tomorrow. So our 3-day stay has turned into at least 6 and likely more. 

Incredibly we have to do this three more times in the next two months, but we heard today that her dose will be decreased by 25% next time.

At the moment it feels like methotrexate won in round 1, but I wouldn't count her out just yet.