It’s Official
The actual annual transplant check-up is in the books. Our prayer is that this was the first of many annual check-ups and the last first.
We celebrated Jennings’s 7th birthday with Pokémon everything, one giant cake by Nana, and plenty of zipline rides. That same afternoon, we packed up our things and loaded the car to head for Memphis over Spring Break.
We left shortly after 6a to get a couple easy, quiet hours on the road. These three pictures sum up the 11-hour trip pretty well. 👇
Celebrating Jennings’s actual birthday with Cracker Barrel pancakes. Henry deliriously passing the time by eating…I’m not sure where all of that salami & cheese sub went, but it disappeared. And then Smally Bear on her last legs…just past the halfway mark.
We made it though, and his appointments started bright & early Monday morning with 7a labs. Over the next four days, Jennings was poked, prodded, examined, and talked to by all the specialty physicians imaginable. He had an echocardiogram and electrocardiogram, social work appointment, audiology evaluation, pulmonary function test, endocrinology visit, CT for bone density, x-ray, sedation for a bone marrow aspirate, pulmonology visit, dental exam, eye exam, physical therapy, BMT team exam, and a nuclear medicine test for kidney function.
Clockwise from top left: riding the donut train, all wired up for an EKG, rocking out in the sound booth, trying to blow hard enough to get the rooster across the finish line and pass his pulmonary function test.
As of this week, we have all of his results back and they’re all great. His bone marrow aspirate, from which the most important results come, showed that he is MRD negative, his bone marrow chimerism is still 99-100%, and there are no detectable mutations for either of his high-risk subtypes (MLL & Monosomy 7). Praise God!
We got similar news from most of the specialty visits as well. We thought he might have some level of hearing loss as he does not respond to the same voice level as the other kids. The audiology evaluation showed he hears just fine, and apparently ignores any commands or questions that he finds inconvenient. Same thing with vision. One of his teachers at school mentioned that he skips lines sometimes when trying to read and he’s not exactly Mr. Contact in baseball. But he passed his eye exam with no issues. He’s just seven and still learning I guess. And hey, reading does go much faster when you skip lines.
The only slightly negative result we got was during the endo visit. All of his blood chemistry & hormone levels are fine, but he is small for his age. By weight, he is in the 25th percentile; by height, about the 5th percentile. His body has gone through two long stints where its sole focus was repopulating its blood-producing system and then its immune system…from scratch. Growth took a seat in the way back, but that’s ok.
Our time in Memphis was not all hospital visits and doctors; we had some fun too. We saw so many of our dear friends. Lee & Dave actually stayed with friends so we could use their house since we brought the whole crew and wouldn’t fit in St. Jude housing. Kelli & Pete had us over to see their new house and have cupcakes with the kids for Jennings’s birthday. We saw Ruth & Blair, our friends from Charlotte who are in Memphis for treatment for their son Park. We had dinner with Zach & Cathleen who are sweet enough (and crazy enough) to invite all four Palmer kids to be in their wedding. We stopped by Mud Island and hung out in the square outside Sean’s House catching up with the family who is back there for their second stay and Suzie & Bill, the best Harbor Town neighbors you’ll ever meet. The Witheringtons invited us over to try out their new pool. And of course, we went to Jerry’s, Central BBQ, My Big Backyard, the Children’s Museum, and down to see the river and M-bridge.
Clockwise from top left: hard to beat Jerry’s Sno Cones on a sunny spring day; the neighborhood Easter Egg Hunt was no joke - petting zoo, train rides, food truck, and age zones for the eggs; Caroline giving Smally more than she bargained for at the Children’s Museum; trying out the pool - no floaties, no teeth, and no central line.
We hit the ground running back in Charlotte, getting back just in time for Easter Sunday. We went to a wonderful worship service followed by a big family gathering. This one doubled as our 12th wedding anniversary, so we celebrated big by super-sizing our leftover mac & cheese portions. 🎉👌
That’s the kids on the left tearing through their Easter baskets as the pre-payment for the top right photo. Jennings already had his first appointment back in Charlotte this week (top left) for a boost of IVIG. And the third grade classes at Smithfield nailed their performance of Pirates! The Musical.
L took a quick trip out to California the week after we got back. She spoke at the Juice Plus national sales conference. They are the title sponsor of the St. Jude Marathon Weekend each year in Memphis. She was interviewed on stage in front of a couple thousand people to tell our story to encourage participation in that sponsorship. I got to watch a recording and it confirmed what I already knew…there’s no one more equipped and well-suited for that task.
Well, here we sit. Checked off the official 1-year post transplant milestone with flying colors. Jennings is on Day +413 today. We are still unable to fully rest or find assurance in his long-term survival, and instead, we strive to focus intently on the present. I think that is right where God wants us.
Having suffered in a unique way, as many of you have in your own ways, we are tempted to think that we have paid our dues. We’ve weathered the storm. We’ve checked the “suffering” box. But that’s not the way it works. God does not promise that for this life. So whether it’s Jennings or something completely unrelated, there will come another storm.
L wrote a prayer for Ember Charlotte last night called The Rock. It focused on Matthew 7 and how, though the rain fell, the floods came, and the winds blew, the house did not fall because it had been founded on the rock. Jesus gives us hope and peace for living in the present, storm or no storm.
Often, the anticipation of the storm, the awareness of a challenge looming, or the potential for future suffering is worse than the thing itself. Like Jennings getting a “poke,” the buildup is worse than the needle. When we feel this anxiety, we can turn back to the present because of our Rock. It is a constant turning back, but we are focusing on and enjoying the busyness of our spring. Come what may, we are His and as such, He will give us the strength and the grace to endure.
“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” John 16:33
#allinforjennings