Halfway
Day +49 today. Right about halfway from the transplant to being able to return home, provided he remains in remission.
Jennings’s weekly day of appointments went well yesterday. His weight is up a little over a pound since last week, which is a significant gain for someone who weighs all of 40 pounds. We are greatly encouraged by that as he continues to eat and show interest in a slowly widening array of of foods.
His blood work looked great, except for low IgG. IgG is the primary immunoglobulin found in the blood and is a fancy word for antibodies. These are proteins that bind to antigens (foreign bodies in the blood) and help remove them. It is not atypical for IgG to be low following transplant. So, he got an infusion of IVIG to boost it as his bone marrow and blood cells continue to mature. We are still awaiting his chimerism results for this week.
The echocardiogram from last week looked better than the ones he had following his first transplant, so that is another good sign. He has thus far avoided being put on any heart medication this time around. That was actually the last medicine he got off last time, so we are thankful not to have that in the mix.
The past week has gone something like this:
Clockwise from top left: Inspired by new episodes of Izzy’s Koala World, they are all playing “kee wawas” at the park. Practicing for an upcoming “Boy’s Weekend.” Everything goes in Henry’s mouth….even dirty socks. Random sticker craft night right before bedtime.
And also like 👇
Top left: Fine tuning the ring light selfie skills. Top right: sipping on water and IVIG…laid back, doesn’t quite have the same ring as Snoop Dogg’s version. Bottom left: Addicts-in-training of mommy & daddy’s favorite “drink place.” Bottom right: Preschool here we come…and Henry’s incredible double-jointed.
In other news, I made a quick trip back to Charlotte this week. Had a work thing on Tuesday afternoon, so I flew in early Tuesday morning and was back out around lunch on Wednesday. It was nostalgic and a bit sad being back around the house, minus the rest of the fam. Going in each room, walking around the yard, jogging through the neighborhood…I had consistent thoughts of the last memories in each spot spurred by what my eyes saw. The evidence of a home vacated in the midst of life. The lushness of spring contrasted against the cold gray of winter that I remember leaving. Tools and sketches still out in the garage from the last house project. Antibiotic & antifungal medicine balls still in the garage fridge.
At times, you want to push away and leave. Other times, you want to pull everyone back, put things back the way they were, and pretend like nothing happened. Neither is feasible.
We are struggling with thoughts around how to reenter. Even the thinking is made more difficult by the fact that anything more than a week out has to be held pretty loosely. No one’s day-to-day life is certain. Yet, most of us live like it is. We had grown accustomed to that way of thinking ourselves. Before Thanksgiving, our fears had subsided and we had begun planning in longer and longer terms. We had plans for a semi-invasive home renovation taking shape. Lauren had begun to explore her calling outside of mothering as the kids were getting to ages where that would once again be possible.
Now, we are staring uncertainty clearly in the face again. We don’t know how much time we have with Jennings. It could be months. It could be a year. He could be cured and live a normal life from here on. The way you prioritize life and the major decisions you make look different in each scenario. It leaves you feeling paralyzed to a degree. That is why the time in Memphis can seem easier in some ways. We have a clear purpose here. We are monitoring Jennings closely and restoring his health, one bite of croissant at a time. We take it one week at a time.
When we get home, or even let ourselves think about getting home, we are pulled into thinking longer term. How will we manage, L specifically, the fall when Jennings is home all day with her? When would it feel like an ok time for her to think about doing something for her? When would it feel safe enough to tear up our home for an extended period? The answers do not come. It becomes easier to punt…talk about something else, pick up a book, do the next week.
You can pray for us as we navigate how to live in light of this reality. I have found myself feeling closer to God. We suffer, yet Jesus our savior suffered before us, for us. I have felt Jesus carry me through the times of heartbreak along this journey. I have every confidence he will carry me no matter the depth of suffering. It becomes easier to hope in the new heaven and the new earth, our ultimate reality. And in the weakness of my own faith, I find that those feelings make it more difficult to hope in Jennings’s ultimate healing. You can pray for that too.
“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Rom 5:3-5
#allinforjennings