A Dream Come True
We rolled over the 1-year mark this past month. That’s incredible to think about and hard to get my mind around. Sometimes, life doesn’t look all that different from year to year. Other times, the contrast is so stark it seems like a lifetime has passed in between. This picture 👇 tells some of that story.
On the left: Day 0, Transplant #2 - 3/11/2021. On the right: Day +365, Transplant #2 - 3/11/2022.
I’ve thought back to that day and that time frequently over the past few weeks, specifically the night of the transplant. It was one of the most acute and critical situations he endured during any of his bouts with AML. His heart rate was off the charts, his breathing was the same and shallow, and he had a fever that just kept climbing. I’ll never forget our nurse that night. She was experienced and good. I knew this because we had had her before, but also just because she was his nurse that night. The easier the patient, the greener the nurse. The riskier the patient, the more experienced the nurse. On cell day for a second transplant, you automatically fall into the latter category. Despite her experience, it was taking work for her to remain calm. She typed his vitals into the computer one more time, then told me she was calling the Rapid Response Team and that the room would be getting very busy. I was scared and Jennings was in a delirious sleep. Fortunately, test results from earlier in the day arrived just in time for the RRT to understand what was happening to him. After some powerful antibiotics and a couple hours of time, he was backing away from the cliff.
It’s been good to remember - a way to honor the experiences and the pain. It magnifies the beauty of where we are today.
As seen above ☝️, we were able to celebrate the anniversary. Jennings’s last appointment was the first week of March and was filled with all the things: standard labs, research labs for the trial, a chimerism check, and an IVIG boost. He took it all (mostly) in stride and it was all hi-fives after the IV was in.
We got the results of the chimerism on Day +364, just in time to celebrate. The news came not without a slight scare, however. The chimerism test is run in Memphis by St. Jude, so the results take several days to come back. I checked in after about three days. The NP came right back and said she had been checking, it was not back yet, and that she would give us an update at the end of the day. I didn’t hear back, but didn’t think much of it. The next day I felt my phone buzz and saw an email from her. The one-line preview of the message on my notification screen started with “I’m SO sorry…” My stomach dropped before I could open it up and read the full message. It was an apology for not getting back to us the day before as promised, but his chimerism was 100%. Huge sigh!
That was an amazing answer to so many prayers. Thank you, Lord and thank you for praying. The dream come true, though, took place about a week or so later this past weekend.
Jennings played in his first baseball game!
Caroline played a couple seasons of softball in between his first & second fights with AML. That got him interested in baseball and ever since he has talked about playing. Last year around this time and further into the spring, he would tell us often, usually right before bed, that he was going to play baseball next summer (meaning this season). Looking at his skinny body, bald head, and central line bulging underneath his pajamas, we would verbally agree while mentally praying that it might be so. If we’re honest, many times we doubted that dream would ever come true. The odds were not in his favor and it can be hard to let yourself hope in the face of the hard. What a blessing to watch that dream become a reality!
Here’s some other happenings from the past month:
Clockwise from top left: Celebrating the new j-o-b; Nothing says Happy 1-Year Post Transplant like chocolate on chocolate cake with your sibs and best kindergarten friend; Enjoying the new fire pit one more time before we turn it into an ice bath for the summer; Henry with his favorite meal. We pulled into the parking lot of that place and I heard Henry. Sniff-sniff. Sniff-sniff. “I smell fwesh fwood!” He has an incredible sense of smell. Whenever he gets a whiff of something good, he says he smells “fresh food” - more often than not it’s deep fried goodness that is the opposite of fresh.
Lauren got to participate in another longed-for event this week. She chaperoned Jennings and his Kindergarten class on a field trip. They went to Discovery Place, but the exact purpose took a little more ciphering when Jennings was asking her about it.
Jennings, “We’re going to the wedduh museum.”
Lauren, “Letter museum?”
Jennings, “No, wedduh.”
Lauren, “What? Oh, weather!”In a couple weeks we head back to Memphis over spring break for the official 1-year check up. We’re bringing the whole gang to do it as a family and be able to spend some time in Memphis. We are excited, anxious, and heartbroken. Heartbroken because we will likely see several familiar faces on campus at St. Jude who will not be there for the same reason we are.
“Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change. Of his own will he brought us forth by the word of truth, that we should be a kind of firstfruits of his creatures.” James 1:17-18
#allinforjennings