Feb 20, 2016 (Scott)

Saturday wasn’t bad, but it was on the grumpy side of things. Maya and I were awakened from deep sleep about 545am–records showed she hadn’t peed since just after 1am. The records were unfortunately incorrect– no biggie, these things happen. Maya wakes up about as gracefully as daddy does… the screaming eventually subsided.

Today was for resting, if there is such a thing, during the induction phase of treatment. No new drugs were introduced, and the only treatment therapy drug given was the everyday dose of decadron which is a steroid — side effects include irritability and increased appetite. Yesterday’s dose of pegasparaginase will stay in her system for weeks — side effects include irritability and decreased appetite. One would hope the two would balance out to ‘normal appetite.’ Not so. I believe I observed a double irritable three year old who was both hungry and NOT HUNGRY!

All of this is hard. We’re humbled through the good times knowing there will be darker times. We move forward knowing it’s the only way to go and having faith that we are on the right path to take us home. One of the hardest things for me is seeing my child’s appetite fade. They come into this world with the simplest needs; food, love, and security are one and the same. Eating is a clear, positive sign. Not eating is uncertain, troubling, very stressful.

Breakfast and lunch were stressful. We tried bargaining, pleading, trickery, but she just didn’t eat much. The kitchen is nice enough to make spaghetti even early in the morning, but that didn’t work either. Alec and Kerri (close friends from SF) visited in the afternoon and brought homemade pretzels– one of the few things Maya showed real interest in eating all day (thanks again, we’ll take two cases as soon as you have them ready).

Thankfully this evening I returned from visiting Lincoln to see Maya eating all sorts of stuff — hotdog, milkshake, pasta salad, bread, carrots, celery, juice… it looked like they’d ordered half the menu. There’s a distinct sense of relief when a sick child’s appetite returns… the spirit is rejuvenated, the little dragon is stoking the fire to fight another day.

Thank you for reading and commenting. We’ve realized this outlet is very cathartic for Sara and me, and your comments remind us we’re not alone. I don’t know what it would be like to do this alone, but I imagine it’d be awful.