Firsts

In many ways, this “trip” back to Memphis is not one of firsts. We are back in a city we’ve lived in for a short time and visited countless times at a hospital we know better than ones at home around plenty of familiar faces, and we are ultimately here for a second transplant. But as I jotted down notes at the end of the day yesterday, it stuck out as a theme.

It hit me driving to the hospital early Monday morning that this was our first time back at St. Jude in almost exactly one year. His last visit had been mid-January 2020 right before COVID shutdown the world. The biggest headache back then was the nonstop appointments condensed into about a 6-hour window sandwiched by all of the air travel fun with a 4-year-old. I’d give anything for a lifetime of those mundane trips now.

Monday was also our first experience of St. Jude during COVID. Most of it is typical of what you would expect anywhere. Everything is funneled down to one entrance where everyone is screened. Surgical-type masks are required, which they will provide, along with a little mini-bottle of hand sanitizer which I thought was a nice touch. After the screening, most of the clinical side operates like normal. What’s so different is the place seems like a ghost town. Patients are limited to one caregiver that can accompany them on campus. Before, it was not uncommon to see entire families walking through the halls or eating together, most of them choosing to make the best out of a situation that one of them had no choice but to endure. Also, most routine follow-up or check-up type visits have been cancelled. For the most part, the only kids on campus are kids who are in treatment.

This emptiness was most apparent in the cafeteria, or kaf as we refer to it. Jennings and I ate breakfast there on Monday and I bet there weren’t 7 other “couples” in there with us. The tables are spaced out and most only have 2 chairs. It’s depressing to see what used to be such a vibrant place reduced down to its main, albeit critical, mission. All of the nonessentials have been stripped away. This is certainly not unique to St. Jude, but from the places I have been during COVID, it is most apparent here. There was always great emphasis put on the nonessentials. Afterall it is a hospital for sick kids, some of the sickest, and so there was intentional effort put into making them feel like they were still kids, like they were not in a hospital. Every waiting room was essentially a giant playroom. Companies, sponsors, and donors were constantly touring and often times hosting events & giveaways for the kids. Volunteers would staff the playrooms and even play with the kids. Hugs, high-fives, and other manners of vitally important physical touch would abound. All of that is gone. Replaced by an almost somberness in the air with everyone focused on the task at hand.

On Monday, we entered A-clinic for the first time with Jennings being a leukemia patient. Previously, at St. Jude, he was only a transplant (B-clinic) patient and was never treated there specifically for leukemia. So this also meant our first in-person meeting with Dr. Rubnitz, his leukemia doctor. Jennings was in fine form for making a great first impression. He was so mad at me by this point in the day that he refused to acknowledge or make eye contact with anyone other than me…and the look he was giving me was not one anyone else wanted. I guess the apprehension of being back in a hospital setting, an 8a COVID test, followed by a “talking to” for completely flipping out during said COVID test will do that to you.

After talking things over with Dr. Rubnitz, I signed the consent for him to pseudo-participate in his first clinical trial and we started outpatient chemo for that protocol that afternoon. Outpatient chemo also being a first for us.

The trial is a Phase II trial at this point and is the “mild” treatment plan I mentioned before. It is a trial to determine the effectiveness in kids with relapsed AML of using a drug called Venetoclax. This drug, like most every drug, was developed for use in adults with CLL but has been recently FDA approved for use in adults with AML. It is mostly used in older patient (70+) who are diagnosed with AML, but cannot endure the toxicity of typical chemotherapies. In the trial, this drug is taken for 21 days and combined with Azacitidine for days 1-7, which is another chemotherapy, but not super toxic. On day 8, next Monday, Jennings will have another bone marrow aspirate to see where his MRD is.

The Aza is an IV drug, so he gets that through his line in the Medicine Room. It only takes about 20 minutes to infuse, but he gets an antifungal medication via infusion as well so the whole process takes about 2 hours each afternoon. The Venetoclax only comes in pill form right now and the manufacturer, again focused on adults, will not “allow” the pills to be crushed. As a result, only kids who can swallow a pill can be enrolled in the true trial and used as actual data. The plan for Jennings was to treat him exactly per the trial, but let him take the Venetoclax in liquid form after crushing the pills. Well, lo and behold, the kid swallowed all 3 chemo pills Monday night. They’re not your typical Tylenol or ibuprofen size either. I showed him the pills and gave him the choice: he could swallow them like a big boy or I could crush them up and mix them with some yucky cherry syrup. He went with the former and did it like a champ. This was partly a selfish move on my part as I was not looking forward to having to crush these 3 giant pills every night for 21 days, mix them with syrup, and then draw them up into who knows how many syringes full of medicine. I was so proud of him.

So far, all 2 days in, the side effects have been minimal. Nausea and upset stomach are big ones with both drugs and I’m worried most about that. A, that’s no fun…for anyone (patient or caregiver) and B, that will further expedite his weight loss which is not what we want pre-transplant. He seems to be experiencing some discomfort, mostly after he has eaten a decent amount, but he has yet to get sick or say he does not want to eat at all. Praying that can continue.

He did complain of leg pain last night, which I brushed off, and then again today twice which set off alarm bells. Bone pain, which is what he is feeling in his legs, is a trigger for us. It’s what he complained of for weeks prior to his initial diagnosis, but it never made any sense to us until then. Now our minds go immediately to leukemia cells proliferating in his bone marrow at such a rate as to cause pain. But, it is unlikely that this is the case now and it is much more likely that this pain is a side effect from one of the drugs. We’ll have a good idea with labs on Thursday and know for sure after Monday’s BMA.

Following Monday, we will evaluate next steps based on his MRD. If he is MRD negative, transplant prep would start immediately. If he is not MRD negative, therapy will continue. Most likely that would involve starting more intense chemo unless the level is 0.2-0.3%ish. If it’s that low, Dr. Rubnitz would consider just continuing the Venetoclax course by itself and holding on any further toxicity. We will see what the results hold. This all ties into one piece of startling and concerning news that came out of yesterday: St. Jude’s pathology report from his last marrow came back and was read at 3.96%. So, we have one lab in Seattle that read 3% then down to 1% and the lab at St. Jude that read 1.75% initially then up to 3.96%. They use different methods for reading and classifying the cells which are beyond my competencies, but still did not expect to hear that yesterday. In any event, it doesn’t change the plan and we were saved from knowing about it sooner and having it affect our demeanors.

In other news, all 6 Palmers got negatives on their COVID tests. If that doesn’t confound you about this virus, then I don’t know what will. As a result, the twins were able to get back to preschool (insert L happy dance here) and mommy will be joining us in Memphis this weekend (insert my happy dance here).

These last few days have been good, and it has been so special to see how the Lord is seemingly affirming our decision to be here in Memphis. We continue to be supported and loved, both by friends we had already made and complete strangers. Our Memphis nanny, Miss Cathleen, from back when the twinkies couldn’t even crawl, came over on Sunday to play with Jennings. She brought all kinds of outdoor fun - pool noodles for battling, balloons, a nerf football, and a roll of gold ribbon for present-wrapping. You can guess what the biggest hit was. That afternoon, Lee & Dave took us to My Big Backyard at the Memphis Botanical Garden. It’s a really neat themed garden tour / adventure / play space…we were regulars during our previous stay. The family that is hosting them joined us with two of their kids, so it was great for Jennings to get that interaction. Lee took Jennings & I on a quick neighbor tour yesterday. Several houses nearby have kids similar in ages and everyone was offering up their swings, playsets, trampolines, anything we want to do - just walk over and make yourself at home. Today, we went over to their host families house after treatment. Jennings got to play outside and enjoy some more kid time in the last chilly minutes of daylight. He took ride after ride on the biggest tree net swing I’ve ever seen. I am truly in awe of the hospitality we have experienced here.

We ended our day today watching, over Chick-fil-a takeout of course, a personal video to Jennings from Trevor Lawrence.

“So Abraham called the name of that place, ‘The Lord will provide’; as it is said to this day, ‘On the mount of the Lord it shall be provided.’” Gen 22:14

#allinforjennings