Colder Weather
Week 6 in Memphis and it’s been much like last week. Busy. Filled with fun, appointments, sibling playtime, laughing, dancing, hurt feelings, yelling, crying, and a touch of school.
We managed to squeeze in a trip to the Memphis zoo on Sunday before the Super Bowl. It was in the mid 30s all afternoon, so we had the place mostly to ourselves. Despite the temps, we got to see enough “cool” animals to satisfy all who made the trip. The lions were a hit and so were the apes, one of whom jumped into the glass as we walked away.
On Monday, the kids enjoyed the one decent day of weather this week with a trip to My Big Backyard with Miss Lee. They had way more fun than they would have with us and we had way more fun at the grocery store than we would have with them. Although I still ended up with a few impulse buys.
Tuesday was the twins first day at their new preschool / parents day out. They seemed to enjoy it and told us all about it in typical kid fashion. Parent, “How was school?” Any kid anywhere, “Good.” End of conversation. It’s a longer day than they’re used to, but it’s only 2 days a week and they get a nap while their. Henry, who loves to sleep, had no problem with that. Charlotte, on the other hand, took a little convincing but eventually gave in, probably under peer pressure.
That night, we were afforded a date night courtesy of our remarkably generous hosts, Lee & Dave. The kids love them and we loved getting one last peaceful meal together. The next time we do that will be somewhere in the distant future. We found a great, new to us spot and had delicious food & drinks and the sweetest waitstaff. The bartender who waited on us at our table in the bar area was perfect for her job. She was so personable and when she heard it would be our last one for awhile, she brought us a toast and small dessert to end the meal. Her helper had a St. Jude pin on and turned out to be a former patient. He moved to Memphis from the Bahamas with ALL in 2008, is now cured, and is pursuing a clinical internship there. That’s one of the silver linings of this world. We have the privilege of meeting and having deeper than average connections with so many wonderful people.
Wednesday was the first day of school for Caroline. She came home super excited and bucked the typical kid response trend making us both sit on the couch for an elaborate step-by-step recount of the day, complete with props and iPad demonstrations. We are so thankful that she will have this outlet where she can be in community with other girls her age. Lauren was reflecting on what a relief it will be to know that if she is showing signs of struggling it will be attributable to this trial we are in and not to loneliness, isolation, or lack of peer connections.
Wednesday was also a busy day for Jennings. He had a nuclear medicine injection into his lines to measure his kidney performance. It requires labs to be drawn from his line at 1 hour, 2 hours, and 4 hours post-injection. That was in addition to his normal CBC / blood chemistry labs. After getting results back from those, we added ourselves a bonus appointment for a blood transfusion. Strangely, his hemoglobin dropped through this week down to 7.5, so we went ahead and got blood yesterday. His other counts are still recovering with his platelets up to 108 and his ANC up to 390.
Our last appointment Wednesday was a consult with Dr. Talleur, his transplant doctor. She came down to the Medicine Room while he was getting blood to save a long day from getting even longer. We FaceTimed Lauren and she walked us through the transplant protocol that St. Jude will use. Most of it was a review, but she did spend time going over each conditioning medicine in greater detail. She answered all our questions and spent a good amount of time with us just talking. St. Jude has pioneered this type of haploidentical transplant (half-match) in a way that optimizes the “graft vs. leukemia” effect while minimizing the “graft vs. host” disease. That is the reason we are here. It was a good conversation, but sobering. Chilling in a way. She wants to hope right along with us, but she also carries an obligation to explain the full reality of a second transplant. That involves using language and numbers that have a tendency to send shivers down your spine.
The chill fresh in my mind, we walked out to the car into one of the coldest days yet. It seems we’re in for a spell of them.
Jennings and I got in the car after jogging through the parking lot. Our breath condensed in the cold air making the familiar smoke-like clouds. “Our bwef is fwozen!,” Jennings exclaimed.
Last night, we got the freezing rain that had been forecast for several days. School is out as a result and from our vantage point, the world is literally frozen. Surprisingly, we also got a thunder storm last night during the freezing rain. Lauren and I awoke to thunder and lighting around 3:30a. It wasn’t long before we heard the soft footsteps that tend to accompany middle of the night storms. It was Jennings who appeared at my bedside. I expected him to be seeking comfort, see my face, and immediately depart for the other, more tender side of the bed. Instead, he asked me in a fully awake and alert voice if I remembered the deal I had cut with him the day before. It involved me promising a “surprise” of a new toy, to be given first thing in the morning for his compliance with something during one of his appointments. Confused at the timing of the question, I told him I did remember and he started to head back to bed. Almost out of the room, he looked back over his shoulder and said matter-of-factly, “It’s dundewing. In case you didn’t know.” And with that he was gone. Lauren looked at me with one eye and sleepily said, “I’m so disoriented. It’s thundering. It’s lightning. And there are little bald kids coming in our room.”
As we enter next week, we expect the colder weather. We expect the hard that comes with transplant. Before our first go-round, I remember thinking to myself, “If transplant is the biggest gun against this disease, why wouldn’t everyone just go to transplant?” After doing it, we now know why.
Our prayer with these expectations is, like the storm and Jennings’s concerns last night, that we will be surprised along the way. That we will get more, or less, than we expect, depending on how you look at it. We hope that he will sail through against the odds…avoiding mucositis, without an NG tube, zero trips to the ICU, narcotic-free, zero infections, minimal fevers, minimal vomiting, minimal diarrhea. We hope this will be the definitive victory over his AML. We pray that, as Jennings constantly models for us, we will find joy in the journey.
Tomorrow is his bone marrow aspirate following the last course of Ara-C. It will be Monday before we have results, but please continue to pray fervently that he is MRD negative. As confirmed in our consult with Aimee, this is the most important data point from all of the pre-transplant workup. This will keep us on track with the plan in place. We will take the step from the bitter cold of winter into the familiar warmth of the BMT unit. We will do it together, in spirit, as a family, sustained by God, carried by the love and support of all of you.
“For God alone, O my soul, wait in silence, for my hope (expectation) is from him. He only is my rock and my salvation, my fortress; I shall not be shaken.” Ps 62:5-6
#allinforjennings