The Weight
It feels easier to insert a link to The Band’s classic song and call it done, but that would be defeatist. Plus, I know you’d rather read than listen to music and I’d hate to disappoint. But it’s been a heavy few weeks for us. Jennings, from an AML and post-transplant state, is all good. There are actually almost no updates to share in that regard since the last post at the end of January. He went to clinic right after the last post for his IVIG infusion. That went well and his general labs looked good then. His next “big” appointment will be late next week where he will have full exam locally, research labs for the trial, and his chimerism checked.
The heaviness is unrelated to Jennings’s diagnosis and treatment, and for that we are thankful. However, that does not make it all that less heavy. I’ll start with the most recent fun and then bounce around from there.
Some combination of us have been down for the count with a bad stomach bug for going on five days now. This had better not be the “new reminder” I was looking for to remember to write this blog (J randomly threw up the night before the last post). It started with Jennings on Friday night and has made its rounds since then with Jennings being down the whole time. With his new immune system, he just can’t shake things like a normal kid.
Monday was a CMS holiday and we had rescheduled a snow-tubing trip that had previously been canceled due to the ice storm. Sunday evening, we thought we might be headed out of the woods and planned to play it by ear Monday morning. Henry made it about 5 minutes into Monday and made that call for us. I woke up later that morning in the same state and Monday proved to be the day that had the most of us down the hardest. I don’t think the six of us moved from the couch from about 8a until 1p, and then we only went back upstairs to bed. 🤣 👇We also set a Palmer Family record watching five movies in one day!
This has been one of the worst bugs to have ever entered our home. As I am trying to type this, Henry, who has been a comatose blob on the couch all day, just jumped to his feet. “Ahhhhhhh,” he screamed, “I need to frow up!” He took off running for the bathroom, God bless him, but came up short by about five feet.
Semi-related to the plague that has befallen us is our desire to get connected at church. We went through the process of searching for a new church when we moved back from Memphis. It was for a whole host of reasons that I won’t go into here, but we really felt called to move on. We found a great church back in the fall that gave us all the feels, as Lauren would say, but we’ve really only been going on Sunday mornings with little other engagement. Only in the last month or so have we been able to start to make some connections. We met with Pastor Spence and got to hear from him about the church while also being able to share our story. He connected us with a Community Group and then the following Sunday we met another family with three boys close in age to our kids. I had a St. Jude pullover on and it turns out that their son is a patient at the affiliate clinic here in Charlotte (not cancer, but a genetic disorder that can lead to it). We had plans to have them over Sunday evening and then our second Community Group would have been Monday night, but obviously had to punt on both. We have realized the time it will take to build a deep and wide community at a new church and we are in for it. We just had the hope of momentum and now the disappointment at its disappearance.
The next stressor or weighty element that I’ll pull out of the hat is: my work. I have made the decision to leave my current position and join my former boss who started his own company at the beginning of the year. Leaving is hard in and of itself in some respects. I’ve been there for eight and a half years, I’ve been afforded many opportunities to grow, and they saw us through Jennings’s first and second bouts with AML. But, the excitement of an entrepreneurial adventure and the fact that all of the above referenced time with this company was also with Josh helped to temper any remorse over leaving.
The process of leaving got started a couple of weeks ago and my last day is set for Friday. Unfortunately, it took and unexpected and sudden turn for the worse towards the end of last week. Rather than have it be an amicable separation like it was trending to be, it turned into something else entirely. I liken it to walking calmly out the door when someone suddenly sticks their leg out in front of you and then someone else pushes you from behind, sending you flying out of the door and landing face-first in the dirt. There was talk of terminating me this week before my two weeks would have been up, but cooler heads have prevailed. I’ve been tripped and pushed, but not hard enough to land me with a THUD and a cloud of dust. I won’t go into the details here as it would not be productive and would only be my side of the events, but the threat of being fired, even if unjustly, is quite upsetting. In a final show of thanks, they told me I would not be permitted to take my cell number with me. So, if we communicate in that way, be on the lookout for a random number soon.
The pediatric cancer world is the final major category of heaviness. We had a period there at the end of the year into January where things were going well personally for us and those we knew at the time. This allowed us some mental distance from that world, not out-of-sight-out-of-mind by any means but definitely not every day in-your-face. That has changed over the past four weeks or so.
Our St. Jude AML buddy who I have mentioned before relapsed for a sixth time recently. He had achieved remission following his fifth relapse and was on maintenance therapies to extend and provide quality of life. He has made it to a point where there is a new trial open at St. Jude for CAR-T for AML. It is a Phase 1 safety study at this time, so only one patient at a time can receive the treatment. He is on the waiting list currently.
Lauren got connected with another local family with a sweet baby girl with a central nervous system tumor, ATRT. Little Eden is not even a year old yet and has been in treatment since November. An initially inoperable tumor, the chemotherapy she received melted the tumor to the point that an operation was possible. A brave team in Boston performed the surgery last week (which became two surgeries in back-to-back days) and was able to remove about 95% of the tumor. She will face more treatment once her little body recovers.
We also learned recently that a little girl we connected with in Memphis last year just relapsed. We have been praying for over a year now that her scans would be clearer and clearer as she moves further and further out from treatment. Unfortunately, at her one-year scans they learned that was not the case and her cancer had returned. They are now back and facing another fight.
Most shocking of all, though, was last week when a little boy named Park was diagnosed with a brain tumor. Park is the three-and-a-half-year-old son of Ruth, one of Lauren’s very close friends. It’s like lightning striking the same friend group of half a dozen women / couples twice with childhood cancer. Ruth & Blair went from hosting said friend group for the Super Bowl to sitting in a consult room on a peds floor the following Tuesday hearing bits and pieces of what the doctor was saying as he gave them the worst news of their lives.
Park had surgery late last week to successfully remove all of his brain tumor. Praise! They are currently waiting pathology results that will help determine next steps as he will face treatment following his recovery from surgery. Blair is keeping everyone updated here and I know they would appreciate your prayers if you would follow along.
We have a lot of friends and acquaintances in the pediatric cancer world. Almost all of them, though, are friends and acquaintances because of that world. So, this really hit us both hard, Lauren especially. Combined with all of the other news from the past few weeks, we were plunged deep back into the childhood cancer waters.
That was a lot, I know. I feel like I owe you for a couple of counseling sessions. But, God is still good. In the midst of all this tough news and life circumstances, He is good. Sometimes it helps just to say it. We can cry out in lament and complain from our brokenness in this broken world but should follow it with a “but” or “yet” — God is faithful and his steadfast love endures forever. Adding that, even when our hearts our filled with lament, complaints, or disappointments, can refocus us. Not remove all of those feelings, but refocus us. He has been faithful to give us just enough strength and grace to wake up the next morning and do the next thing.
This verse immediately came to mind in the days following Park’s diagnosis.
“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our afflictions, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too. If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.” 2 Cor 1:3-7
We have had the opportunity along the way to see this verse in action. L walking alongside Ruth through the initial phase of Park’s diagnosis is an especially poignant one.
It hasn’t all been doom & gloom…like all of life, there are bright spots in the hard times and tough spots in the good times. Here are some to end on a high note…
Clockwise from top left: ice skating date with my big girl; ice skating with the whole crew to celebrate Margot turning 1!; the birthday girl 😍; Smally looking to see if they have ice skates for her other two paws
Happy Valentine’s Day!
Patio transformation courtesy of some great people at MetroGreenscape.
Please pray for our friends and their kids battling cancer. Please pray for our current level of stress to subside to something more sustainable. And, like always, please pray for J’s chimerism check next week to still be up at 100%.
#allinforjennings