Jacob and Jodi had a good night together and today has been a pleasantly busy one in Room 21. During and after rounds, the speech therapist and occupational therapist visited for a half an hour each. They were great. Since Jacob has been almost completely isolated from other children his age he’s not had any experience with turn-taking, etc. and they have some neat ways of teaching that sort of thing. Most of their assessment and therapies are play-based and very creative. For instance, one had him playing a combination of kickball and bowling: she pitched him the kickball and he’d kick it at a pyramid of Playdough cans, knocking them all down and impressing himself thoroughly. Good times.
He still asks about going home every day and he’s started ask, “Where’s Justice?” This part ain’t easy.
Medically speaking, we continue to enjoy the calm before the storm. Jacob hasn’t slowed down at all and we’re trying to drink up his active mischief. He likes to pit his Triceratops dinosaur against the hospital room’s oxygen-dispensing valve in headbutting duels, despite my repeated advice that his dump truck would make a better adversary.
We’re told that he’ll begin slowing down sometime after Day -4 which is December 1, three more days away. We’re anticipating that he’ll feel sickest between Day 0 (Transplant Day) and Day 14 to Day 20. If he’s typical, he’ll “hunker down” at some point and may want to spend much of his day in bed. I’ll probably be begging him to attack the oxygen valve before it’s all over. Having said that, it all varies greatly from patient to patient. We’re praying for a smooth, peaceful journey.
Our daytime nurse, Anna Marie, went over his chart and orders with us today. She is terrific, really a blessing. As she kept turning pages and talking about what’s coming I couldn’t really keep track of it all: it is overwhelming to see all of the medications and therapies and treatments they’ll be using at once. I told her of my mask and gloves plan and she spoke of “a false sense of security” such plans can engender. Thorough and frequent handwashing is what they always bring us back to.
He’s going to get three more IV medications over the next two days. Two of them aren’t new to him but they’ll be watching for reactions. I’m afraid that pretty soon he’ll be on monitors most of the time – more beeps and alarms and more lines. He had two lines infusing at the same time today and several times he’d say, “You’re all tangled up!” and we'd have to extricate an arm or a leg.
Aunt Rebecca is camping out tonight so Jodi and Justice and I had a chance to have dinner together and take a night walk under the moon. Nice. Life right now seems to consist of moments rather than days or weeks or months.
Thank you for all of the prayer and support that continue to pour in. It’s been okay thus far but soon the intensity will get turned up a bit. Today was the last day of his first chemotherapy drug. Tomorrow will be a day of rest from chemo but they’re taking the opportunity to administer two other drugs. And then on Thursday they pull out his second chemo drug, one of “the big guns.”
Please check out the “Pictures” page for some shots of our last night together before admission to the hospital – there are some great shots of Jacob and Justice enjoying the early Christmas decorations. And if you haven’t watched Jacob’s video yet (click play on the “Home” page), it would be an excellent use of your next seven minutes…I may watch it myself before I turn in. Good night!