Day 35

We felt very loved today. There hasn’t been a day on this journey that we haven’t felt this way, but today, especially, we felt it. So many messages, texts, and words of encouragement, from family, friends, and parents I don’t even know who are on similar paths. We welcomed deliveries of cards, gifts, meals, produce and hugs. We ended the day with a lovely family meal, some bubble time in the front yard, and more James and the Giant Peach before bed. Yesterday was hard, but we are moving forward, supported and determined.

We are in the calm before the chemotherapy storm, so today we tried to keep things light, fun, and cozy. After Michael went to work and Banyan went to school, Benji and I got ahead on school work (it may be a while before we have a chunk of focused, weekday time). We spent three hours working on almost all of his subjects, with some fun projects thrown in. We also made some culinary creations together: crab and spinach omelets, goji and almond granola, tomatillo salsa. He’s so bright, so happy when he’s creating.

There were several times today that Benjamin experienced the extremes of his mood swing spectrum. Most of them were on the high end, ranging from giddy to hysterical to manic. We’ve been off of dexamethasone for a week now. I wasn’t expecting these effects to last this long; on the contrary, they seem to be increasing. The hunger persists as well, though I’m less concerned about that. This next phase is likely to produce the opposite consequence. For now I’m trying to up the water and the potassium to help his body detoxify, and wait to talk to the oncology team tomorrow.

Aside from a complete blood count to get Benjamin’s numbers, tomorrow’s clinic visit will consist of no medicine, only conversation. We will learn much more about this new path we are on. I have so many questions. My list is long and still growing. Our hospital bag is packed. Over the bridge we go.