Summertime
And the livin’s easy. Easy is a relative term, of course. Lauren would otherwise argue that at some point during most days, rightfully so.
We have been good. Really good. And we are thankful for that.
Jennings’s last appointment was all the way back on June 1st, just after the last update. He had all kinds of labs drawn - CBC, chimerism, trial research - but that was it. We were in and out of the clinic in half an hour. His labs looked great and his chimerism came back the next week at 100%. 🎉We also found out that his IVIG level is finally starting to hold its own, so hopefully he will not need any more boosts of antibodies.
We celebrated the last day of school with much joy. For Jennings, the year began very immunosuppressed; a first day of school that lasted about 45 minutes with a teacher who came to the house. It ended with a full day, in the classroom, like a normal kid.
Lauren, in a continuation of a tradition from her school days, threw the kids a “first day of summer” ice cream party when they got off the bus. We wasted no time in getting the summer events kicked off and jumped in the car at 5a the next morning to head to Memphis.
There was nothing medical about the trip at all. Our dear friend, and the twins’ former nanny from Transplant #1, Cathleen, was getting married and graciously asked all four kids to be in the wedding. No, yes, that’s right. All four.
Lauren and I were beaming as they came down the aisle in pairs. The boys first as faux ring bearers and the girls next as flower girls. They each managed to keep their outfits looking presentable and did exactly as they were told. Cathleen’s idea wasn’t crazy after all. We had a great long weekend and were so honored that the kids were included in Zach & Cathleen’s beautiful wedding.
Clockwise from top left: Henry at the rehearsal dinner rewarding himself for a taxing rehearsal after spending all day in the car; getting some sweet time with Memphis friends at their family farm; the beautiful couple with their wedding assistants (and Smally nailing the pose for mommy against the instructions of the actual photographer); twin love on the dance floor.
Seeing Jennings run around the reception with his siblings brought back some bittersweet and poignant memories. The last (and only other) wedding he had been to was his Aunt Meredith and Uncle Andrew’s back in the fall of 2017. He was a pudgy two-year-old then, running around with the same innocent joy. That reception is an Ebenezer to me. He was sick then, but we did not yet know that. He would be diagnosed a little over a month later, effectively ending our time with him as a squishy toddler. He would emerge from treatment at close to four-years-old, more boy than baby. At this last reception, almost five years later, we got to watch that same boy with the same smile run around, healthy. God is good and here is a side-by-side to show it 👇
In this first wave of summer, we’ve gotten to participate in two events (live & in person!) for two of our favorite organizations that are pushing childhood cancer research forward. Neither is perfect (and neither are we), but each is contributing towards advancing knowledge and treatments in pediatric cancers. They believe, as we do, in the observation I’ve shared before from Richard Doll included in The Emperor of all Maladies: “Death in old age is inevitable; death before old age is not” and so they fund research for those with the greatest potential.
On the left, the Leukemia & Lymphoma Society Man & Woman of the Year gala. That’s this year’s winner in the middle, Jen Kipphut, flanked by the winners from the past two years: Denise Hartmann (2021) and Lauren (2020). Neither of them were able to experience a live gala the year they won, so they got to introduce Jen as the winner this year. On the right, the St. Jude Celebrity Chef & Wine Dinner. Lauren shared our story that night and the event itself raised $1,043,720. It’s important to us to stay involved and we are thankful for these opportunities to do so. Sad stories about kids get to people and it’s important to use that to hopefully give more of those stories a positive ending.
We find ourselves, now, in between trips in a wondrously normal summer season. Lauren and I went to Jamaica last week, just the two of us. It was supposed to be last year about this same time, but Jennings’s relapse and treatment had other ideas. It was a special time away and we are indebted to the grandparents for keeping the kids in order to make it happen. We made sure to drink a pina colada or two for them each day.
We first went to this resort on our honeymoon and fell in love with the place & the people. We have been back four times now, two of them rescheduled due to AML. Adrian, the beach butler (bottom right), has brought us drinks on the beach every single time.
Next week, we are back in Manteo, NC where, at the end of last summer, we got a two-week reprieve from a hard year. Our beloved friend Laura and her family have been incredibly generous and gracious in allowing us to use their home. It, too, has been a place of much joy and healing in our lives.
The following week, Jennings will return to Memphis for his next scheduled check-up. Please pray that it’s as quick & easy of a trip as it should be and that his chimerism is still 100%. I hope each of you has a great 4th of July and we’ll talk soon.
Psalm 30, v2: “O Lord my God, I cried to you for help, and you have healed me.” v11-12: “You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness, that my glory may sing your praise and not be silent. O Lord my God, I will give thanks to you forever!”
#allinforjennings