Well,

we made it. Jennings was discharged on Sunday, like we hoped he would be. He did not spike any more fevers Saturday night or Sunday morning and all the cultures from the past couple of days remained negative. Other than the random fevers, he was in great clinical shape so the team felt no need to keep him in. So, after much packing, even more waiting (on pharmacy to get meds together), and a healthy dose of confetti, Jennings was wheeled out in a wagon, St. Jude-style in a Radio Flyer.

He spent 33 days in the hospital. For anyone scoring at home, that’s two less than transplant #1. Not bad considering he had a tougher go this time around with several infections and a couple flirts with intensive care.

We came home and had the brief celebration that Jennings had dictated to us on several occasions inpatient. Well, we had most of it anyway. He wanted everyone to have a present to open, which they did…and all at once, hence the brevity. We did not execute the cake part of his request and he, of course, nauseous and unable to eat, did not even notice.

Clockwise from top left: So long, Room 10. The twinks mistaking the sculpture honoring the Pediatric Cancer Genome Project for a playground. The reunion. The celebration. Here is the reunion in motion…notice smallish bear, the copycat and a constant annoyance to big sis who cannot grasp that imitation is the sincerest form of flattery:

After the presents were opened, Jennings picked out a movie for the kids to watch. Cool Runnings…a mommy favorite that always elicits a few quotes in a spot-on Jamaican accent. Lauren and I unpacked an obscene amount of stuff that accumulated in his hospital room and then went to work setting up our very own pharmacy in Sean’s House. The movie ended just before 5p and so did Jennings’s stamina 👇

He told L that two hours until bedtime was too long; then he crashed, on the couch, lights on, and other kids playing noisily around him. He slept on there until we carried him up for bed a couple hours later.

We got the blessing of a couple days off from the hospital. Usually, you are discharged from transplant, typically late in the day due to all of stuff that has to happen, then you are promptly required to return early the next morning for your first clinic visit. The best part of this devilish scenario is that most of the reason behind the late discharge is the time it takes to fill all the prescriptions. You then leave the hospital with several clothing store-sized bags of medicine only to be required to bring each one of those medicines back to clinic with you for your first appointment. So back you go, lugging a duffle bag worth of meds, about half of which are refrigerated so don’t forget the ice packs. On top of that, they check levels on several medicines at this first appointment which means you cannot take these medicines until after they draw labs, so you also have to come with dosed out syringes to administer these medicines as soon as that’s done. It almost leaves you wondering why you wanted to be discharged.

Since this is not our first rodeo and the team trusts us as his caregivers, he got a pass on his first until today (Wednesday, Day +20). He continues to look great, clinically….which is a big asterisk of a clarifier. Compared to a normal almost 6-year-old he looks quite the opposite of great. His labs are all still looking good. His ANC continues to be in the normal range above 2,000. His platelets are still normal and his hemoglobin is also now recovering. This equals no more transfusions 👍👍. The best news: his chimerism is 100% donor #2 cells (donor #2 is my middle name). Chimerism is a measure of who’s cells are making up his blood. The goal is for this to always be 100% donor. If it drops even to 98-99%, that means Jennings’s native cells are now in circulation and those are the cells from which the AML originally came. This will be a weekly test for him while we are in Memphis, so please pray with us we see 100% each and every time. A drop in chimerism is typically indicative of a pending relapse and, if you recall, that was the first anomaly we saw in his bloodwork before he relapsed in November.

The togetherness has been wonderful, but Jennings emotionally has been down. Moments like this (👇) family walk to the park with cool new binoculars have been the exception, not the rule.

Mostly, he has been relegated to the couch watching shows or just sitting there. His energy level is so low that any “activity” is followed by rest and in dramatically unequal proportions. We reinstituted naps for him, so he goes down and sleeps with the twins in the afternoon. Sadly, he did not resist this notion in the slightest. He says his tummy hurts most all day and is still not ready, or able, to eat. He threw up with Lauren at clinic this morning, but other than that, fortunately, has been keeping his feeds down.

He is physically not right, obviously, but seems to be struggling more emotionally. It is a lot of transition and change. He is in a new (to him) house. Other than a 5 minute visit before he got admitted, he hasn’t been in this house and doesn’t remember it from last time. He developed a deep familiarity with life in the hospital, and with familiarity there is often comfort. He had almost constant 1:1 time with a parent while inpatient and that’s just not a reality outpatient being one of four. He also seems to be processing his own physical state and weakness compared to his siblings. When he last saw them, he felt generally fine and could hang with them. Now, they are the same, yet he is so different he cannot engage.

In the presence of them or us, he has been often hiding behind pillows or under blankets on the couch. He refuses to speak most of the time and points instead. He prefers the thumb-up, gun-like point, jabbing it back and forth for emphasis. When he does have something to communicate, he has been pointing to me, then whispering in my ear for me to then verbalize. Last night he did this in response to mommy’s question before bed. The message was that he would talk to her if we went upstairs into his room. There, he asked me to leave and basically verbalized to her that he is sad.

It’s hard on us and C, especially. She has been missing her buddy and looking forward to getting him home, just like us. Now he’s there and he wants nothing to do with her. Please pray for his spirits. That has been one of our concerns since he relapsed and they had started taking some hits while inpatient, but this is a new low and it’s tough.

Please pray also for our “next step.” We have been furiously researching and learning about current clinical trials and new research in AML. It is an exciting time for immunology and potential cell therapies across the board. These developments have been slower to translate to AML for several reasons, but there is currently a lot of active research and it’s started to gain some traction. What we are interested in is cell therapy with the goal of preventing relapse, rather than treating it. This is so “new” that there are only about four total trials that have been initiated to study it. All but one are off the table for Jennings, and that one is technically closed to him. But, we are using our team at St. Jude, the team in Charlotte, the team in Seattle, and all of our resources / connections to get around that technicality. We had a great conversation today with Aimee and she is behind our efforts, taking the lead as the coordinator of all of the parties involved. I’ll share more about the trial once we have a better feel for what the “answer” will be.

I have purposely not shared a lot of statistics and survival-related numbers. To say they are relatively poor, which I believe I have said, is a fair assessment. These trials mean there is something out there that (potentially) increases, maybe even greatly increases, these odds. Lauren and I both feel strongly that this type of treatment is the way of the future and is the best chance we can offer Jennings to keep his disease from coming back. We have both advocated from the beginning of his relapse that we are not ok getting through transplant and leaving it at that. In God’s providence, Dr. Gottschalk, the chair of BMT and cellular therapy at St. Jude, was “on service” for one of the weeks Jennings was inpatient, so we saw him in person every day for a week. That afforded us several opportunities to engage him in conversations and get our message across. We are incredibly hopeful and inspired after today’s conversation with Aimee.

It is Holy Week. The fact that this conversation took place during the most hopeful week of the year is not lost on us. We desperately hope for Jennings’s cure. And we are reminded this week, as we remember the death and resurrection of Jesus, that our hope is in a sovereign and merciful God.

He is risen! He is risen, indeed!

#allinforjennings