Turns out the timing of the last blog post was a great divider. It felt that way at the time. He’d had five days of feeling well, but the conditioning regimen was about to get a whole lot tougher. It did not disappoint.

The day after the last post was Thiotepa day / day of baths. Lauren was on duty to handle and the first one started out with a protest, generally setting the stage for the next 30 hours. The Thiotepa caused him some nausea as well and with the agitation around the baths and dressing changes, he got sick a couple times over those days. To no one’s surprise, the 3a bath turned out to be the absolute worst. Jennings kicked and screamed through the entire ordeal. I was so glad Lauren was there for this, not just for obvious selfish reasons, but she was a great comfort and advocate for him. When he was passed out at 3p (bath time) the next day, she convinced the nurses to let her bathe him in the bed with soap & water while he slept. This is the after shot of that go round 👇

Sweet boy. In true J-man fashion, he surprised everyone and had a prefect, protest-free final bath at 9p that night. The night nurse thought everyone was full of malarkey for how they talked up how bad the last bath would go.

The following day he started Melphalan. That is some tough, tough stuff. He vomited a couple hours after the infusion and that set off a chain reaction of throwing up or at least dry-heaving about a dozen times through the rest of the day. Lauren said at one point, he looked at her confused and said, “Why does my tummy huwt so bad today?” He can’t exactly put it all together and just knows he’s been in the hospital awhile and hasn’t felt like that. We upped his Benadryl-Ativan drip to around half of his max limit and tried several additional bolus doses of each to get the nausea under control, which resulted in a late afternoon nap. Like the champ he is, he woke up from that and asked Lauren for Chick-fil-A. Amazing.

Day -1, the next day, was another dose of Melphalan for Jennings along with Rituximab, an antibody medicine similar to the rabbit ATG. He weathered this dose much better. With the B-A drip increased and some Phenergan given prophylactically, he made it through the day without getting sick. He even asked for Chick-fil-A again for dinner, but realized his body was not going to cooperate with his mind after a couple nuggets and fries. The nausea and mucositis told him to quit.

It was this night that the toll of those few days started to weight on him. I had switched out with L that day and we were getting ready for bed after the failed CFA attempt (but a successful Lego Batman screening). I came back into his room after dropping something in the parent room and he looked up at me from under his warm blanket, “I’m sad. I just miss Carowine, Shawett, and Henwy.” With a heavy heart, I agreed with him. “We have a million more days to go,” he cried. I know man, I know.

Day -1 was also donation day for me. So while Jennings was upstairs battling nausea, tethered to a telemetry monitor for most of the day, I was in the donor center tethered to the apheresis machine. The procedure went well. It took the entire allotment of six hours and over five of those were spent actually donating. And that is the worst part. For all of those hours, you really can’t move much at all. You are strongly incentivized against said moving by having a fairly massive needle in one of your arms. In the other arm, an IV is inserted so you have some mobility with this arm. Fortunately, Lauren lovingly came down to visit me. I, lacking the coordination and ability to pull it off on my own, grabbed this chance to have her help me with “the jug.” I’m not sure what I would have done if she was not upstairs with Jennings and able to come down at my beck and text. (This is an unfortunate reality for lots of parents right now due to COVID). I drank tons of water ahead of time, as instructed, to make sure my veins would be in good shape. They were in great shape apparently, but there was no way my bladder was going to be for five hours….and I would have made a mess of the old “one arm pee into a urinal while laying on your back in a hospital bed” trick.

That there 👆 is a stem cell donation for a haploidentical bone marrow transplant for those of you wondering how they do it.

Thursday marked Day 0, round 2. It got off to an early start with Jennings waking up to pee at quarter of six and noticing the dawn light beginning to filter through the blinds. His precious night nurse offered to turn on a movie and sit with him until shift change at 7a when I finally got my life together. After the early rise, Jennings wasted no time in packing a full day a little bit fuller. He spike his first fever that morning. As I’ve shared, first fevers on the transplant unit get special attention and they launch a host of precautionary measures including a needle stick. The peripheral stick gives them “belts and suspenders” on blood cultures to be able to pinpoint the source of a possible infection. Jennings knew from all of our prep-talks that he would get a “poke” when he got a fever. I explained to him that he had one and did my best to talk him up for it, but it ended in the ugliness of childhood cancer just like it always does:

That’s mommy on FaceTime at his request. Three of us holding, one line nurse sticking. Timing-wise this turned out to be a blessing, and a curse as we’ll see later. It was a blessing in that it happened in the daytime when I had time to prepare him (although it only works so well as you can see). Most of the time with the actual transplant, the cell infusion itself, patients will spike a fever in the first several hours. Cells are almost always given late in the day, which means a fever spike after bedtime, only adding to the trauma you see above.

Lauren and I got to enjoy some time together on the floor with him. She came up after the scene above wrapped and stayed until the first round of cells went in. We took advantage of a mid-day burst of energy brought on by Physical Therapist Jamie who came to “play.” Jennings got out in the hall for some celebratory laps, complete with mommy-daddy arm swings.

If there’s one thing we’ve learned, you take the energy when its there and the good moments when they come, no matter how short lived they may be.

He got two infusions of cells on Day 0, and since they collected all they needed from me in one day, they were able to give both infusions to him on the same day. The first bag of cells arrived around 6p and the second got started about 9p.

Clockwise from top right: Rescue meds taped to the window for quick access…there’s a slight chance of a sever allergic reaction during cell infusion and so these medicines are dosed into syringes and taped to the patient’s window for each and every transplant. First bag of cells being hung on the IV pole. Priming the IV tubing with the cells for infusion #2. Infusion #1 snaking its way into Jennings.

We both got to hold the bag beforehand, Lauren prayed over them and the transplant, and then we watched as every last drop made its way into Jennings. J-man, despite being informed, was into his iPad and oblivious to the significance of the event. I think he was more attuned to the anticlimactic-ness of it.

Now back to the curse of that first fever. It was just before the second infusion started that things started to go downhill. Lauren had left to get back to the twins for the night, so it was just J & I for bag no. 2. His fever had not really broken all day (the picture of him in the hall above is him powering through a lower spot of around 100°F after Tylenol) and then he had several high blood pressure readings after the first infusion. So, they decided to give him medicine to help his blood pressure before giving him more cells. Medicine to help with blood pressure made me perk up a little bit; he’s never struggled with that before in all his treatments.

We went ahead with the infusion and as it finished, his fever crept up to 102.1°F. It was late at that point, so we started getting ready for bed. It was hard to see him like he was….slightly shaking, puffy and red from fluids / fever, burning up hot, but freezing all at the same time. All that and if you asked him how he felt right then he would say, “Good.” Definition of a trooper and a champ.

He dozed off and I worked on getting ready for bed. Before laying down, I was watching his nurse check his vitals. I could tell she was concerned. I walked over and she told me his fever was up to 103.5°F. His heart rate was up, way up, as well. She left to go talk to the NP to see about getting his Tylenol orders switched from oral to IV. While she was gone, I watched his heart rate jump up another 10 bpm consistently from the upper 150s to the upper 160s. This is a kid who is sleeping and who’s max rate should be somewhere in the 120ish range. I was nervous.

She came back several minutes later and we checked his temp again. He was up to 104.7°F. I watched her enter his vitals into the charting system on the computer. Based on the numbers entered, an orange alert screen popped up. She explained why this happened and then told me she was calling the RRT. I asked her, already knowing the answer, what the RRT was. In a shaky voice she said, “Rapid response team.” I put my hand on his smooth, bald head. It almost burned it was so hot.

Within minutes, the room was full…the ICU NP, transplant NP, his nurse, the nurse leader for the transplant floor, and the respiratory therapist. The ICU NP was clearly in charge and didn’t even make eye contact with me as she went to work. She started taking notes off the telemetry monitor, asking his nurse questions, and intensely watching his respiratory and heart rates. Their looks of concern were amplified on me and I could tell they were teetering on the edge of moving him to the ICU.

While we were huddled up at his bedside, the transplant NP’s phone dinged and the concern on her face melted away. She showed me the text and announced to the rest of the team, his peripheral blood culture had just popped positive. He had a bacterial infection. They now knew the source sending him dangerously close to crashing and they knew how to treat it. They ordered Vancomycin immediately, one of the stronger antibiotics.

About that time, the attending ICU physician arrived and got up to speed. She, along with the rest of the team, looked much relieved but informed me that he wasn’t completely out of the woods yet. The Vancomycin has a tendency to send blood pressures plummeting, especially when given to patients with a full blown infection. If that were to happen, and it stayed down for more than a couple readings, he would be headed to the ICU. They told me we would have our answer in the first several minutes after the antibiotic started dripping into his line. Crazy how fast things work in the body.

Fortunately, that did not happen. The Vanc started and his blood pressure actually normalized. His other vitals did not, but they stabilized at their too-high-for-comfort readings. I sat next to him until the Vanc was finished and flushed (about 12:30a) to make sure what didn’t happen in the first several minutes still didn’t happen. Then I turned the telemetry monitor so I could see it from my bed and laid down. His nurse was in every hour for vital checks and the combo of the antibiotic and IV Tylenol went to work on his fever, heart rate, and respiratory rate. He steadily improved and had close to normal vitals by 5a.

This is a window into that night. 👆 It was incredibly hard to see him like that. Heart pumping out of his chest, lungs working in overdrive, burning hot, sleeping in a delirium. Right before the RRT got called, I walked up and knelt down beside him. Sensing me, he said with his eyes still closed, “You don’t have to be fwustwated at me, daddy.”

Everyone I spoke to today has the same assumption. Based on the culture that grew, how it grew, and the timing, the infection is likely due to bacteria entering his bloodstream through his lost tooth. With everything else going on this week, Jennings thought it would be good to add on a couple tooth fairy visits to the BMT. He lost his first ever tooth on Monday morning (day before Melphalan which destroys the mucositis barrier in your mouth) and promptly lost another the morning of Day 0. It is comforting to know the source and have a treatable infection on our hands (vs something tougher like a virus or fungus). He’ll be treated on antibiotics for the next couple of weeks to hopefully clear the infection while he awaits his new cells to engraft in order to build his own immune system.

The downside to the infection is that he will continue to spike fevers over the next several days. Tylenol should help keep them in check, but later this morning (Day +1) he was back up to 103.5°F. Right after that was wrangled under control, he received a platelet transfusion. And right after that finished, it was NG tube time.

The nasogastric tube is one of the most horrible things to Lauren and me about transplant. They look like they feel bad to have in (annoying at best), they are difficult to manage as caregivers, and they are pure torture to put in. I think, during his first transplant, he had to have his inserted four times. They are often vomited back up or accidentally pulled out. There is just nothing comparable to holding down your screaming child with a team of people as one of them tries to fish a tube up their nose, down their throat, and into their stomach.

We gave Jennings a healthy dose of Ativan right before the procedure in the hopes of relaxing him. It helped but he still fought like hell on the first try. His nurse, who is absolutely wonderful, got it about 1/3 of the way in before he coughed and spit it back out. We regrouped with me and two nurses telling him what to do and encouraging him that he could do it. Right there in that moment we broke his will. He asked us through tears to let him go and stop holding him down. He put his hands down by his side on his own. In between reflexive gags, he tried his best to swallow as instructed to help them help the tube down. Once it was all the way down, he threw up, just like they always do. By the time the tube goes in, there’s nothing but medicine, bile, and stomach acid left, but out it comes. NG tube #1 down. And after that, they drag your fever-ridden body out of the bed into a wheelchair and take you down to imaging for an x-ray.

Center: right after insertion, looking like someone who has been beaten physically and mentally. Top Left: on the way to x-ray to verify placement of the tube (have to make sure it’s in the stomach not the lungs before you start pushing food through it)…side note and hard to see, but that nurse still has his #allinforjennings bracelet on her lanyard from Transplant #1. Top Right: at least you get to pick your own decorative accessory stickers.

I know this post is long and a good many of you probably never made it down this far. I also know it was probably a bit harder to read than usual. My goal, our goal, with this is to tell the honest truth about one tough kid’s journey with pediatric cancer. There are days when it is light and airy, and you can almost forget where you are and why you are there. Then there are days when you can’t look at your own son his hospital bed without tearing up. Days when you go down to tag-out with your wife in the drop-off loop and can’t get the words out because of the sobs. “How is he?” “We just broke him,” I finally got out, tears streaming down my face.

There is an ugly, ugly side to this world of pediatric cancer. I had never seen it and wouldn’t have wanted to see it before Dec 2017. I inhabit it now and feel called to share it with you. I will share the fun, the light, the good too. But I will not spare you the hard. These kids deserve better. Better’s only hope is people speaking up.

The ugly side applies to this world in general, too. When you come face to face with that reality, with the ugly side with your name on it, you better have something to cling to. Something that won’t let you down. I know of only one such thing and we are thankful that we have it, now more than ever.

“The Lord will fight for you; you need only to be still.” Exodus 14:14

#allinforjennings