First of all, thank you for reading, commenting, and sharing our story. Jennings’s story. We are so encouraged by how many know and love our boy. We are held up by your prayers. Your investments, both emotionally and in time, mean a great deal to us.

Last weekend, after the last update, and into Monday, we saw some improvement. Jennings was doing and feeling as good as could be expected given the circumstances. Granted, that is not saying a whole lot, but it is decidedly better than the alternative.

The spiking and sustained high fevers subsided, giving way to persistent low-grade ones. His nausea stayed mostly in check and vomiting occurred only about once a day. He began having diarrhea, but only a couple times a day and not uncontrolled by any means. All of this is par for the course and generally speaking, the best you can hope for during transplant. We enjoyed the time and rejoiced in his desire to engage, play, and laugh.

He made a wreck of his bed using play-doh and kinetic sand with his “chomping dinosaur.” He transformed several new transformers. And he built a couple new LEGO sets, one of which was his first Hidden Sides set. These have an interactive app that you can download and use with the set to play games. As with LEGO Mario, it’s a shame to see LEGO turn a physical building toy into yet another activity that involves a screen. But I digress. He finished the set early Monday morning and immediately said, “Dad, we gotta get that ab!” Ab is apparently Jennings for “app.”

Sunday evening he even showed interest in food. My room service dinner special came with a breadstick and he said, “I wish I could have some bwed.” I broke him off a small chunk and he ate it very slowly. Then he washed it down with about 3/4 of his water bottle. This was his first food since last Wednesday when he barely ate his Chick-fil-A and his first water other than small sips here and there.

These encouraging signs did not last, however, and he began to hit some bumps late Monday. I switched out with Lauren and left her with a dressing change as one of the first orders of business. She did not say, but I feel certain she was grateful.

Despite a great line nurse, the iPad, and all the toys, it was not easy. It’s a nasty combination: 1) he genuinely feels pain as his skin is super sensitive and months of a central line dressing cause severe irritation (even breakdown at times) and 2) he just doesn’t like the procedure (being still, wearing a mask, not touching it, etc.).

Later, during his nightly bath wipe routine, Lauren noticed some skin breakdown under his armpits. I hadn’t noticed the past couple nights, but by Monday he wouldn’t let Lauren touch them. Upon further inspection, there were more spots around his groin. All of them in skinfolds. The culprit? Thiotepa. That is some intense stuff. Lauren and nurses bathed him every 6 hours. Laboriously going over his body, cleaning with soap & water, checking behind each other. Despite all that, it still found crevices where it could hide leaving essentially what looks like 2nd degree sunburn in its wake. This is him 👇 with an ice pack to try to ease the burning sensation.

His interest in food continued Monday evening and he asked for some CFA. Wanting to encourage his interest, but knowing it would be mostly futile, Lauren ordered. He only managed one bit of fries. No bueno.

I was just sitting down on the couch after getting C to bed, when Lauren called on FaceTime. I answered planning to have a quick goodnight call, but when she came on she said, “Things have taken a turn for the worse here.” She was in the parent room making the call, but it didn’t take long for me to hear the screams in the background.

He had thrown up not long after trying the fries and that set off a gagging and screaming episode. Lauren and I are both fairly seasoned caregivers at this point, so for her to call during something like this I knew it was bad. He was gagging up gobs of mucus and screaming for the better part of an hour, “Der’s something stuck in my fwoat!” In reality, he’s right. There is something stuck in his throat. It’s his NG tube and he’s had that annoying feeling ever since it went in on Friday. He doesn’t quite understand that it is supposed to be there. In his mind, he helped swallow it so it should go in his nose and magically appear in his belly, not still be in his throat.

We talked through options and agreed on how to handle the situation, then Lauren jumped off and I waited…hoping not to have to call a neighbor to come sit with the kids so I could go in for backup. He got a big bolus dose of Benadryl and Ativan, then Lauren started telling him the story of the night he was born. He loves when she does that. She only got through the first couple of sentences and he passed out. He was exhausted from the episode, plus the medicines thankfully took effect.

Lauren was impressive in how she handled the intensely stressful moment so calmly. We were almost instantly on the same page about what to do and she executed it well. We started pain meds as the incident was almost certainly due to mucositis. As previously shared, the Melphalan obliterates any mucus membrane in your body. The diarrhea that started over the weekend (plus the not eating) was a clear indicator that this had happened within his intestines. The screaming / gagging event told us it was now in his throat and esophagus at a level that was causing pain. This morning, the scheduled morphine was switched over to a fentanyl drip. This comes, sadly, with a button that he (or we) can press to give him a bolus dose if his pain intensifies. It is obviously limited so that it will only give the dose at safe intervals no matter how many times it’s pressed.

This, again, is par for the course. He was on a fentanyl drip during Transplant #1 and he confirmed its necessity this morning during his light therapy. She asked him how his pain was and held up a card with various faces denoting different levels of pain. He selected face #4, “really hard” to swallow or eat. Here he is holding hands with our favorite light therapy nurse while she administers the treatment.

If Lauren’s steadiness under pressure were not enough, she made another great call today (Day +6). Jennings was supposed to start G-CSF as part of the REF2 transplant study he is on. That’s the same medicine I took before donating. It is given as a part of this protocol in order to stimulate engraftment and the speed at which engraftment occurs. Things like mucositis are with you permanently until you engraft. His body is currently incapable of healing itself from the damage done by the various chemotherapies. Only once new cells begin to grow in his marrow and produce healthy blood cells, will his body begin to repair itself. Until then, the best we can do is manage pain and side effects with other medicines. Hence the G-CSF to speed along new cell growth and help kids feel better quicker. However, it has been shown in some data to be associated with relapse. To the non-oncologist mind, this makes sense. His new cells have yet to start growing and fighting off any of his leftover old “bad” cells (the entire theory behind transplant). So, if there are any leftover bad cells, you could be stimulating their growth inadvertently by giving the G-CSF.

Lauren had heard about this through her momcology connections and researched it further on her own. The head of bone marrow transplantation at St. Jude happened to be “on service” this week, so he came into see Jennings today. Lauren asked him about the G-CSF and he was somewhat surprisingly supportive of not giving it. He acknowledged the mixed data on its use & effectiveness and said it should not effect the graft overall. If he’s going to engraft, he still will. It just may take a little more time. Thanks to Lauren, we made the call to take it off of his regimen.

So. That is where we find ourselves mid-week. Some good, some not-so-good. In these moments of not-so-good, Jennings says the hardest things. He is very attune to his emotions and the moment. He surprises us by expressing them so well, lightyears beyond his age. A common one has been that he misses his family. His little lip sometimes quivering and his eyes sometimes welling as he gets it out. Last night he said, after the episode before passing out, “I miss daddy. It’s hard being away from your famiwee.” He then asked Lauren to put the Xbox controller in the bed so he could think about us playing games. Empathetically he added, “It’s not that I hate you (mommy). I love you. It’s just that I want daddy. I wish you both could be here.”

The emotional toll is much more pronounced with his age this time around. It is just as difficult, if not more so, to sit with and process as the physical toll.

You can pray:

• that he engrafts on “schedule” this weekend, sometime around Day +9-11 or so

• that engraftment is manageable…often, kids feel worse before feeling better (potential for more high fevers and other risks)

• that his spirits remain up as much as possible and that he continues to process & express himself

• that his pain and nausea are managed well and kept under control

We remain hopeful. The darkness will not last. We are promised as much. “I will turn darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them.” Isa 42:16

Moments like this 👇 help us to remember that.

#allinforjennings