Into the Fray

After a graciously good start to Transplant #2, last night saw the first glimpses of the battle that looms. Jennings handled all three days of ATG like a champ and made it through with almost no side effects. Because those days are so intense for most kids, they are followed by two rest days for a bit of a breather before more conditioning chemo. For J, those were essentially party days. He felt fine, wasn’t getting any conditioning meds, had an appetite, and tons of energy. So much so that he nearly tore his central line dressing completely off, earning him a bedtime sticker change. That’ll shut the party down pretty quick.

Yesterday, one dose of cyclophosphamide changed all that. The day started ok, but several hours after the infusion the chemo started to take its toll. He did not want to eat all day and by late afternoon I could tell he wasn’t right. He complained about his tummy hurting a couple times and then finally threw up around 5p. One blessing of his slightly older age this time around is that he can understand and communicate these things a little better. He got every bit of it into the green barf bag I handed him (apparently just in time).

After he got sick, I asked the nurse to start the Benadryl-Ativan drip. Lauren and I had decided to wait the night before when the NP asked if we wanted to go ahead and start the drip. We didn’t buy much waiting time with that call. The drip basically keeps a low dose of these meds in his system at all times, which can help relieve some of the prolonged nausea that most transplant kids experience. Not long after the drip started it was time for his nightly oral meds. I consider it borderline torture to give a child who has just thrown up, and has a completely empty stomach, multiple medicines on that same stomach. But, borderline torture is essentially what you sign up for with a transplant, so on we went with the meds. It was all he could do to get them down and he managed to heroically keep them that way for over an hour, but eventually got sick one more time around 8:30.

Two pukes, no dinner, and no energy is how we kicked off the night of pees. Cyclophosphamide is the lovely drug that, in addition to making you vomit, requires you to pee every two hours. They jack you up with IV fluids to facilitate the process. It’s all to prevent the medicine from sitting in your kidneys and / or bladder where it might break down the inner lining. We had been practicing the peeing part all day, but the waking up is the tricky part. Every two hours, I dragged myself out of the parent room, sanitized my hands on the way into his room, and woke him up to pee in his “jug” (Jennings’s slang for urinal). After the 10p try, I gave up on the waking part (the kid can sleep through anything, thank God) and just started standing him up in the bed while still asleep.

Most all of you know already, but he is such a champ in the face of the hard. After he got sick the last time, it was right before bedtime. I lingered over him a bit too long I guess, asking if he was sure he felt ok. He looked up at me cheerfully and said, “We don’t want to waste rest, so….(get out of here).” Then, after I told him to sleep tight, as I was leaving he said, with as much of a wink as he can manage, “Yeah. And don’t let the night bugs bite.” Night bugs. Ha. Love that kid.

Today has been a much better day. I was here last night and had early morning labs across the hospital in clinic. He was out this morning and sleeping in from the hard day / night, so I had to leave him mostly asleep when I left. I came back about 45 minutes later to find him sitting up happily entertaining four people in his room. His main nurse, the nurse doing light therapy was just finishing up, and the two PCAs (one training) were all smiling and laughing as he played Xbox Lego Jurassic Park with one of the PCAs.

He had school with his St. Jude teacher in his room this morning and then we followed that up with a few laps around the floor so he could show me his new sport he learned with Mommy.

The hockey laps eventually transitioned into assassination laps using the hockey stick as a gun. Jennings fully expected every nurse, PCA, housekeeper, or doctor to dramatically feign being shot. One housekeeper actually hit the floor.

Later this afternoon, we tried virtual live Bingo. It was as much of a cluster as virtual elementary school. No one on mute, cameras not on, the hosts fumbling through the technology. I can point it out because I’ve personally done every one of those things more times than I care to admit. The picture gives you a good sense for it.

But, everyone persevered and Jennings was the second winner. He got to pick a prize from the screen, which was then hand-delivered to his room a couple hours later. You’ll be shocked at his choice.

Pretty sweet set for a Wednesday afternoon Bingo game. His first Harry Potter set, so the novelty was fun. If you ask him about it, it’s Parry Hotter. At least that’s what he says. Don’t correct him.

He got his first ever dose of Fludarabine today and will get four more over the next four days. It is supposed to be tolerated fairly well and so far, that’s holding true for him.

The “home” front has been going well as we enter the first full week there. We’re figuring out grooves and routines that work, then re-figuring them out two days later. The switching out, while we are very thankful to be able to do it, is like living in constant weekend travel mode…except for the going somewhere fun part. We live out of overnight bags and only spend one full day in one place; the other two days are half and half as we make the switch. Hard to find a rhythm, but we’re working on it.

We’re trying to balance routine-seeking with fun for the other kids. This is hard on them too in a lot of different ways. This was us looking for trouble on a rainy Sunday evening.

The Bass Pro guys were not amused. The ATVs cost more than my car is worth and the boat more than my car when it was brand new.

Sometimes the fun gets carried away.

I was cleaning up dinner the other night when I heard Henry start to whimper in the other room followed by his big sis scolding him and hollering out, “Dad!” The green LEGO was about that deep inside his nose.

Here is one last picture for you. It sums up how we live day-to-day right now. We say hi and bye almost at the same time. This is a special Chick-fil-a drop off for a Jennings that felt like eating some dinner.

As we enter into the fray, our hearts have a tendency to waver, but we are thankful for these truths. “Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy.” Ps 61:1-3

….and I lied about the last picture. One more from the pyramid…

Big bear. Smallish bear.

#allinforjennings