Love in the Mist
I believe we about have this website email notification thingy figured out. My inability to even name the problem tells you how much I had to do with the fix. In any event, the streak is over and I have medical updates for you.
Lauren took Jennings back to Memphis at the beginning of last week for his 2-year post-transplant visit. With St. Jude being a research hospital, these visits are marathon sessions where they completely evaluate him from head to toe, inside and out. We have typically done these over spring break because they span over several days and are so intensive. I make it sound like we’ve done many of them, but in reality it’s only been two. Both were the 1-year check ups as we missed the 2-year visit pre-relapse due to COVID. Anyway, we also used them as a way to get our whole family back to Memphis to see friends and just be together in a place that has been so impactful in our lives. This year we had family in town over spring break, so we punted on that plan and last week happened to be the first available slot we could get. So, L and J flew out late Monday for all day appointments last Tuesday and Wednesday.
I am thrilled to report that we have all the results back and everything looks great!
Clockwise from top left: assuming the position for waiting in an exam room; riding the donut train / getting a CT; somethings never change - like waking up from sedation and having your cereal; on the plane with mommy.
His CBC was the first to result only about an hour or so after his lab draw, and it looked pretty good. I say “pretty good” because he had a higher than normal white blood cell count, which in his case can be quite the red flag. But another marker seemed to indicate that it was from an infection he was fighting and his normal platelet count also pointed away from AML as being the culprit. Platelets are some of the first cells to go when leukemia begins to take over the marrow, so if it was relapse you would typically expect a very low platelet count. Sure enough, on Thursday we got the MRD result from his bone marrow aspirate the day before - NEGATIVE! Over the next couple of days we got the rest - peripheral blood chimerism 100%, bone marrow chimerism 100%, and no detectable traces of the genetic abnormalities associated with his specific AML subtypes. These are picture perfect results and we are ecstatic to have them.
The time leading up to the trip and then waiting for the results was not without anxiety, however. We can so easily misinterpret the various happenings from our lives and end up spiraling into a dark place of fear.
It had been sooo long since his last chimerism check. Then, the week before the trip he started feeling bad (hence the infection that we later realized). It started out as pink eye, but by the Monday they left, had transitioned into a 103 deg fever. When they got to Memphis, he was tired, not eating, complaining that his legs hurt, and asking to be pulled around in a wagon like a sick kid. Trigger, trigger, trigger, trigger. You begin having to constantly talk yourself off the ledge. Step back, stop looking down. Some of that is a form of self-protection, some is a lack of faith giving into fear.
Levity-through-pictures break. These are all from what Lauren dubbed “May Day.” I said yes months ago to a golf trip with my dad, then we got our spring activity schedules. The Saturday of the trip, the boys had a baseball game, Charlotte had her spring dance recital, and Caroline had her state gymnastics meet. They did manage to start the day with a little royal history and I did my part by taking in the views.
We come out of that anxiety filled week looking forward to summer. We feel able to fully anticipate the fun we have planned and even added one to the list as a celebration. Jennings is good and it will be six months before we check again.
Here are some others from May after mommy slayed May Day 👇
Clockwise from top left: I took Charlotte on a date recently and she asked to go to the climbing center 😍; yay for a day to celebrate moms and all they are; baby steps in the kitchen; celebrating the good results with all the video games, bright colors, and candy for tickets.
We are rejoicing. Others are weeping. We are still learning how to hold that tension. My uncle lost his wife after a long battle with ALS. We went to a Celebration of Life for a friend’s daughter…she was two. Even just today, a good friend called to tell me that his bro-in-law has just been diagnosed with cancer and is not doing well. He’s married to my friend’s sister, just turned 40 years old, and has a 2-year-old son.
We are to rejoice with those who are rejoicing and weep with those who are weeping. We are called to act and engage. We won’t do it perfectly. We can’t control the outcome. We won’t be able to get in a nice orderly box. Yet we can do it with the hope of the gospel, looking to Jesus for how.
The pastor at the Celebration of Life did a beautiful job sharing the gospel. And then a sobering job of listing the metaphors the Bible uses for the brevity of our lives compared to eternity - a passing shadow, a breath, grass that withers, a flower that blooms then quickly fades, a vapor that appears then vanishes. He sprayed a mist bottle into the air. The mist was there, then it was gone. Whether we live for two days or 80 years, our lives are but a mist. What will you do with it?
“…love one another earnestly from a pure heart, since you have been born again, not of perishable seed but of imperishable, through the living and abiding word of God; for
‘All flesh is like grass and all its glory like the flower of grass.
The grass withers, and the flower falls, but the word of Lord remain forever’” 1 Peter 1:22-25
#allinforjennings