Four down.

One to go. That is, years post-transplant and in remission until Jennings is considered “cured.” All the results in Memphis came back great, starting with his CBC. We had those results before we even finished eating breakfast in the Kaf Tuesday morning after his early morning lab draw. Perfect numbers and a great way to start the appointments. Plus, Jennings got the poke out of the way early, and just like last year, took pride in letting his siblings watch him bravely hold still and watch the needle go in, not crying, flinching, or making a sound. The sweet blood draw nurse took about 20 vials of blood from him, and he didn’t miss a beat. Better man than me. I would have been begging for apple juice or starting to pass out after about vial #5.

Tuesday was a full day. Following breakfast, it was off to get an EKG and echocardiogram. After that, a quick x-ray of the bones in his hand. They use this to determine his “bone age,” which is then compared to his actual age. They’re not so worried about old bones (which is what I believe I have now). Rather, the concern is over delayed bone growth, which can result from all of the treatment he has received.

Then it was an ultrasound of his thyroid and on to audiology for an in-depth hearing evaluation where he gets in the sound booth with his DJ-style headphones. This was another year when they confirmed his hearing is just fine. Apparently, it’s listening comprehension, specifically when it’s mom or dad speaking, that seems to be borderline nonfunctional at times.

We got a break for lunch, then the other kids headed straight back to Family Commons where they had spent most of the morning. Brother Sean was still holding down the maker space and remembered our crew from last year. They kept him busy bouncing from the 3D printing machine to the custom printed stickers designed on iPads to the stop motion filming set up. Henry even sewed a small pillow in the shape of an egg. Well, he had some help from a kind volunteer who looked like she knew a thing or two about stitching. She did not, however, know many things about Henry and gave him the job of using the needle, poking it in between her barely spaced fingers.

After lunch was a visit to the eye doctor. I realized leaving lunch that we (I) forgot to prep him for this. They always want to dilate his eyes and he cannot stand this. It was by far the worst part of the visit for him. I was not there for that one (with the others playing video games I think), but Lauren was texting me updates. “He’s so pissed.” A couple minutes later, “So mad.” Then finally, “SO. MAD.” Not only is he not a big fan of eye drops, he hates the fact that it messes up his vision for so long. Not ideal when the two things you are looking forward to after the appointment are either tinkering in the maker space or playing video games.

Needless to say, he was not super talkative for the endocrinologist who we saw last on Tuesday afternoon. We were especially interested in this one since he has experienced some slowed growth from treatment. In general, things looked ok. One of his thyroid markers was low and has trended low over the last couple of years. Not alarming by any means, but something they want to keep a closer eye on so we will now be visiting his local endocrinologist in between visits to St. Jude. He is also getting into the early range of when puberty can start, so they want to keep tabs on that as well. The encouraging sign was that he still on the same growth curve that he has been on for the past couple of years. It’s still about the 8th percentile curve, but he’s not falling off of that down to an even lower one.

We try to get a Danny Thomas statue picture every year, but it was just the kids this time. The birds look pretty dialed in so I was not willing to stand that close to him. On the right, that’s a corridor highlighting all of the donors and memorials that have been made - a good reminder of what it takes to keep that place running and at the same time, why it is so needed.

Wednesday was a lighter day of appointments, but the most enjoyable for us. We got to see and spend time with his transplant team in B-clinic. It was so good to see them, catch up on Jennings, but also catch up on life in general for everyone as well as what they have going on research-wise right now (more on that later). They confirmed what all the results we had received so far were saying - he’s doing great and they (or we) couldn’t ask for anything more! His chimerism was not back as of that visit, but they brushed that aside as if it was a non-issue.

For us, that was harder to ignore. When he relapsed, it all started with a low chimerism result. That low chimerism came from a clinic visit where his normal CBC labs looked absolutely perfect. One week after that perfect CBC, a new one showed his white count at almost 100,000. So, we give ourselves grace for wanting to see actual results before we do much internal celebrating. Those ended up not coming until we were almost halfway through the drive home to Charlotte. I’ve never refreshed the test results page in MyChart so many times in those three days. That definitely kept us from fully exhaling in relief while we were in Memphis, which was a bummer since it was spring break too.

You might notice there is no mention of MRD, genetic mutations, or biopsies. This was his first year post-transplant where they no longer check his actual bone marrow for disease, only his peripheral blood. Quite the milestone and it meant no sedation as well. Jennings actually asked L when he would get “sleepy juice” and seemed generally disappointed when he found out that would not be happening. My how things change. He used to hate it and would wake up mean as a snake, but now I think he equates it with getting to eat whatever he wants, getting pulled around in a wagon or wheelchair, and indulging in some screen time.

It's great to have made that transition, and Aimee and Zoey prepped us for the one we will have next year. Next April will be his first visit to the ACT clinic and his last visit with the B-clinic team. ACT stands for After Completion of Therapy and will be the clinic he will see once a year until he turns 18. Such a blessing to have this resource to help him navigate his healthcare and the late-term effects that may come. Aimee, his transplant doctor, made the great point that just about everyone that sees him will never have seen a patient like him before.

Despite not having the most important result, we were able to spend the afternoons and evenings doing some fun stuff and eating at our favorite Memphis places. By Thursday night, our last night, we were about done with eating out at restaurants. Our bodies were feeling the effects and eating in a restaurant 2+ meals a day with four kids multiple days in a row is probably even more hazardous to your health. In fact, it should come with a Surgeon General’s warning. We also got in a trip to the zoo on Thursday, our only nonappointment day, which was great since we did not get to do that last year. We swapped that in for the Children’s Museum, which we finally convinced them they are too old for. 😅 Here’s a few more from the trip:

Left to right, top to bottom: Ever since Jennings returned to B-clinic after being inpatient for his 2nd BMT, he has been racing his nurse, Brittany. He used to be pretty easy to beat when he was frail, bald, and dragging a central line with him. Now, it’s a serious all-out sprint down the hall. Jennings and his four years…so long that they’ve relocated the “hope” sign. Waffle Wednesday in the Kaf - just about worth the drive from Charlotte on its own. L at the new and improved Tom Lee Park overlooking a very full Mississippi River and her favorite, the “M” bridge. The gang on Mud Island just before sunset. We also try to get a picture of Caroline & Jennings each year beside their picture in the ALSAC building.

Ever since the visit with Aimee, I’ve been struck by something she said. We asked her about research and what she and the other transplant doctors were currently working on. That led to some questions about funding and if St. Jude has been experiencing any impacts related to the cuts to the NIH. Lauren had recently referred another family that had reached out to her through a connection to Dr. Bollard at Children’s National who ran the RESOLVE trial. The trial is not yet complete, though they are currently not accepting new patients due to uncertainty in funding. St. Jude has deep reserves and is less dependent on NIH grant funding than most research institutions, but it is affecting how they are looking at the future.

We then asked her about the trial that Jennings was on for his 2nd transplant. It was the REF2HCT study at St. Jude and is not “protocol” for bone marrow transplant patients. It is currently a Phase 2 trial that is closed for reporting and evaluation. That means that the actual transplant that Jennings received, as well as the follow-on targeted T-cells that he received to help prevent a relapse are not available. That is maddening to me. If Jennings was the first patient on either of these trials, then maybe I could see that. But both of these studies have been going on for years. The St. Jude trial was a Phase 2, which means it had already been proven “safe” in Phase 1. The RESOLVE trial was Phase 1, but that has closed and been submitted, and also shown to be “safe.”

It is depressingly mindboggling to me that in diseases where so much remains unknown by modern medicine, kids are blocked from receiving treatments that may save them because the system is so fraught with red tape and bureaucracy. I’ve written about it before, but this just further cements my belief that if you a) are willing and accepting of potential outcomes & side effects and b) have the means (or can come up with it) to pay, you should be able to receive any treatment out there for a life-threatening disease. If this strikes a cord with you, I would encourage you to read The Emperor of all Maladies. The book walks through the history of cancer and cancer treatment, highlighting the pioneering work of Sidney Farber in Boston who, through trial and error, discovered a compound that would put certain cancers into remission. His patients were children with acute leukemias. Children who, if left alone, would die a painful death in a matter of months.

Now we have a system in place, designed with good intentions and to protect, but that is a barrier to the very types of discoveries in life-or-death outcomes that led us to this advanced place in the treatment of cancer.

This is why our family is such a big supporter of St. Jude. They won’t stop until no child dies of cancer. And by God, they shouldn’t. We shouldn’t. They are willing to work with, and fight if necessary, the FDA to get kids exemptions to receive off-protocol therapies. In our case, they were willing to partner with another institution to get Jennings on the RESOLVE trial. And they are committed to solving the inequities that exist in pediatric cancer globally. In poor and less developed countries, the pediatric cancer cases that are diagnosed are often not able to be treated because the drugs are not available. They are not a perfect organization, but they are mission focused and we have seen their dedication to it on a deeply personal level.

Apologies for the rant, but leaving kids and families without options when there are options seems counterintuitive to what we should be striving for. Before we go, here’s a few non-Memphis versions of us from the past month. And here’s to kicking off another medical-update-less blog post run for the next 11 months!

Left to right, top to bottom: Another meet down. This was the farthest one of the season - in Wilmington, which naturally turned into a mommy / daughter trip for the weekend. Jennings and one of his friends went back-to-back with the birthday parties on a Saturday. Jennings’s was first and then we went to the Checker’s game for his friends’. That’s the closest Henry has ever voluntarily gotten to a mascot or person in costume. Ever. Jennings is 10! And he got a big boy present - his first pocket knife. I think it might come with a bonus trip to the ER, but we’ll see. Easter Sunday at New City! We look alright considering we made it to the 8:15a service. Quick fun fact for you….Easter was officially Day +1500.

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:3-5

#allinforjennings