The Exhale

Like a big, deep breath being let out slow and steady. That is what we felt when we got the first of Jennings’s major results back while still in Memphis. He was MRD negative from the results of his bone marrow biopsy. The results continued to trickle in over the next few days….peripheral chimerism 100% Donor 2, bone marrow chimerism 100% Donor 2, KMT2A-MLL fusion transcript NOT DETECTED. In short, no trace of leukemia or even the genetic mutations associated with his last occurrence of AML. Perfect results.

The trip was great. We left just after 6a on the Monday after Easter and had a pretty smooth, but long, trip out. It was the first family road trip in the new van. May have aged her 3-5 years on the inside, but she did great. We got settled into our airbnb on Mud Island. It lacked the picturesque setting of Sean’s House in the Harbor Town section, but it was in a familiar location and close to the hospital. We went almost straight down to the newly renovated park along the river to get some energy out before dinner at Central BBQ downtown. We reminisced about celebrating our anniversary here six years before, even remembering where we sat on the outdoor patio, while Jennings was on Day -2 for his first transplant. It spurred a conversation about how being back makes us feel. For Lauren, it stirs up anxiety. For me, it’s a lot of nostalgia which is oddly comforting.

Tuesday was all day appointments, which started out bright & early with labs. That meant a poke. And that meant a chance for J to show his whole family at once how brave he is and how much of a champ he has become at getting stuck. He sat right in the chair all by himself, asked the nurse questions about how it would go, gave her feedback on how he wanted her to do it, and then let it happen with barely a flinch. It brought tears to our eyes watching him advocate for himself and then face it. As Jennings would love to tell you, I would have passed out halfway through based on the amount of vials they had to fill. He thoroughly impressed his siblings, too. Later in the morning, Caroline, in a moment of reflection, said to Lauren with complete sincerety, “J is so cool!”

We were at the Jude until about 3:30p, but most of the other appointments were specialty check-ups that went as expected. He had an x-ray on his hand to check bone density, growth, and bone age as all of these can be adversely affected by the treatments he had received. That was followed by an endocrinology follow-up, audiology, a pulmonary function test, an echo and EKG, and even a dental follow-up.

The endocrinologist spent so much time with us patiently listening to all of our questions and explaining everything so well. Jennings is very short for his age and treatment can wreak havoc on the thyroid and other hormone regulating functions of the body. He is in the 8th percentile for height. Pre-transplant he was right around the 50th percentile. Unfortunately, she confirmed that he will likely stay there. The hope is that he stays on the 8th percentile growth trajectory and does not fall off of it. She did the math and told us that, most likely, he will top out at about 5’-2” when fully grown. That’s far from being “the end of the world” stuff, but it’s also not the track he was on before his disease. It will make some parts of life hard for him and has already started to, so we grieve that. His younger brother is not his “little” brother anymore - they are the same height. He already plays down a year in baseball and is still one of the smallest kids on the team. And he occasionally gets mocked or picked on by other kids when he tells them his age - they just don’t believe him.

We ended Day 1 by going to see some friends that afternoon before hitting our favorite Memphis burger (well, maybe margarita is more accurate) spots.

Wednesday was another full day of appointments with the first half being his bone marrow procedure. Beforehand, we met with his whole BMT team. We had the entire family in the exam room. It was a bit of a show, but it was such an encouraging visit for both us and them. They hadn’t seen our other kids in five years due to COVID restrictions the last time we lived out there. I don’t think they get a ton of those type of visits. To see them light up and smile and not have anything too serious to talk about was a true joy. It was encouraging for us to hear just how far they were willing to go in talking about where he is. Both Aimee, his transplant doctor, and Zoey, his NP, said that relapse from his original disease at this point is extremely rare. Per Zoey, “We just don’t see it.” And Aimee said, and this is a doctor who generally refuses to talk in numbers, chances, or outcomes, “It’s not zero, but…” Now, secondary cancers and other complications remain a small threat. Afterall, there is a decent chance that is what resulted in his second occurrence of AML - it is technically classified as a relapse, but very well could have been treatment induced. But, nevertheless, in hearing them talk we felt greatly encouraged.

After the visit with the team, Jennings went down to Procedures to be sedated for what feels like the 917th time. I took the others out to grab some Gibson’s Donuts to go with the usual post-sedation Froot Loops - the perfect way to wake up and break your fast. We finished up his appointments and then went over to the Bass Pro Shop in the pyramid. This is a place we spent an obscene amount of time in during our stays in Memphis, so the kids had to go back. That evening, we got to hangout with the couple that (bravely) had all four of them in their wedding almost two years ago, Miss Cafween and Mr. Zach.

Thursday was our one free day and we made the most of it as a Spring Break celebration since the good results were starting to roll in. The highlight for the kids was the Children’s Museum. This was the most anticipated place for them to visit as we talked about what we would do while in Memphis before the trip. It was so fun to see them run right to all of the things they remembered from their many visits in years past. This place rivaled the pyramid for most time spent inside by the Palmer family while living in Memphis. Even Caroline at 11 had a blast.

The highlight for mommy & daddy was a celebratory fancy, white tablecloth dinner at a place where we had several dates in years past, fighting for joy and hope through tears. To go back all together to a place where we had prayed for this day to come was really special.

In between, we made a Target run to bring some toys and cheer to a little boy and his family that we have been connected to and who is currently inpatient on the BMT unit. This is the little guy whose mom I saw with Jennings back in November. They are from near Charlotte and he just went through his second transplant for AML. He is currently disease-free, but facing some serious GVHD, still in the thick of the fight.

While in the fishbowl, just outside of the BMT unit, we ran into another familiar face from six years ago. He goes by “Paw” and is an older retired man who has been volunteering at St. Jude for years. When we came on our very first visit to St. Jude when we were still trying to decide if that was the right place for J’s first transplant, he took Caroline & Jennings and played with them for over an hour so we could talk to the doctors uninterrupted. It was truly a divine gift to run into him on this visit and be able to share that story with him. He even made the blog way back then! He shared his own connection to St. Jude with us - he lost a grandson before his first birthday to leukemia. He would have been in college today.

We left Memphis early Friday morning driving into the sunrise and on into Charlotte, like a boat leaving the marina, the throttle inching forward, the bow planing up, and a larger and larger wake developing behind.

Thank you for your prayers and continuing to follow our story. And for your patience in waiting for this update, especially if you don’t follow Lauren on social media. We’ll be back towards the end of May for our regularly scheduled update, but here’s a few pictures from the trip before we go 👇

Left to right, top to bottom: it moved but the hope mural is still there!; Henry knows how to road trip - yes, that is a sausage wrapped in some type of dough on a stick; yay for seeing the Bowens!; Charlotte is falling for Buc-ee’s a little too hard; the poke show; the maker space area in the Family Commons.

Just a quick plug on St. Jude and how they serve patients & their families in creating spaces like the Family Commons. I mentioned this area after our last visit in November when I got to see it for the first time. Our kids loved it on this visit and it was really the only way we were able to have everyone there all day for two days of appointments. Their favorite areas were the music studio (and it is as legit as that sounds) and the maker space. Like I said, St. Jude really goes above and beyond with amenities like this for families. They even have a full-time staff member in the maker space to help kids with robotics, 3D printing, and other ways to build and create. The young man, Sean, who works in the space was so perfectly suited for that role. I was so thankful that Lauren encouraged him in his gifting. Not only was he patient and kind to our kids who are clearly just there for a check-up and / or are siblings. But, we got to see him totally cheer up a pre-teen boy who was having a hard day of treatment. The boy walked in, and Sean asked him how he was doing. “Not good, not good,” he said. It was clear he had gotten some bad news that day that he was old enough to understand. Sean, almost like an older brother, put his arm around and responded with a “well, we’re gonna get through it” and took him over to what he had been working on the day before. The boy’s face changed instantly and he was in the moment, in the maker space, not worried or focused on his disease. We got to observe the whole interaction from a distance and Lauren told him how amazing it was. What a gift.

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