on Benjamin slept deeply and peacefully last night and I followed, breathing with him. I woke up at shift change, grateful to see one of my favorite nurses coming on board to shepherd us through these next days. I did not get up to look at numbers. I am not writing them in my binder anymore.… Continue Reading Day 764/136
on It has been a long day, but here, at its end, gratitude is finding me easily. Benjamin went to sleep last night complaining of throat pain. At 3am, he woke me up crying, coughing, and clutching his throat. We assumed our familiar late night bathroom positions, he in the tub and I on the rug… Continue Reading Day 383
on I was wrong about the Tuesday tummy ache. It returned this morning too. They are gone almost as soon as they appear; still, I don’t like them. Benji’s tummy aches have been harbingers of bad things, and bad things aren’t welcome here. Today was filled with more Christmas and birthday preparation and a longer to-do… Continue Reading Day 349
on It was a nice, soft, slow, sweet Saturday. Benjamin woke up feeling great. He felt some leg pain last night, which sounded like aftermath of his Erwinia shots; by this morning it was gone. His mucositis has not advanced. So aside from the antibiotics he takes every weekend, today almost felt like a “day off”… Continue Reading Day 65
on Today was a lot easier than yesterday. Benjamin was still quite hungry; he woke up at 7, and by 8, he’d eaten a sushi roll, an English muffin pizza, two sausage links, a bowl of fresh berries and a plate of noodles and pesto. But the urgency and irritability that accompanied yesterday’s hunger was gone.… Continue Reading Day 19
on Today was…hard. Benjamin didn’t feel well most of the day. I know this is to be expected, but man, is it difficult to watch. He was tired, achy, and never satisfied in his belly. We didn’t take our dogs for their morning walk. We didn’t even complete our school work today. We just tried to… Continue Reading Day 14