Round 2, day 3

We are hanging in here at Brenner. Poor Watts has had a rough time handling the second round of HD Methotrexate. His mouth sores have spread, his rash on his chest is inflamed (again), and the mucositis seems to be getting worse by the day. His side effects are suppose to peak a week after the first dose, so that means that all of this could keep getting worse till Tuesday. Sigh. It is pretty awful to watch as he chokes and gags on all the mucus in his throat. He has stopped all eating/nursing by mouth and, as of last night, starting nightly continuous feeds through the ng tube. As a die-hard breast feeder, I have agonized over this decision but know that it is best. Dr Russell explained that kids/babies with great nutrition tend to respond best to chemotherapy, so I am on board. I'll keep pumping, use the milk that I have, and supplement as needed.

We may go home super late tonight, just like last week, if his levels show that he has cleared enough of the methotrexate. We'll go home loaded up with pain meds, feeding pump, and a very weary little guy. If not tonight, then they'll keep checking through the weekend and we'll leave as soon as he clears.

We'll have a couple days at home then are scheduled to re-admit for a five day stay on Tuesday. After that, we'll have a four day stay then some days (weeks? I can't remember...) of outpatient treatment. After that, we'll do the whole nasty Methotrexate regimen over again (4 days here, 3 days home, 4 days here, 3 days home, then a 5 day stay that isn't MTX) followed by a 21 day stay for treatment. After that, the hospital stays should decrease.

It is a long, hard road.