Blessed,
we have been. Jennings has had several days of feeling pretty good. The Fludarabine has proved to be as tolerable as advertised and for that we are thankful. His counts are headed toward the old nadir with blood & platelet transfusions again in his near future, but otherwise he is ok. He’s had tons of energy and a pretty ravenous appetite over the past few days.
Today, Sunday, is Day -4. This was his last day of Fludarabine and tomorrow it is on to Thiotepa. He gets a dose in the morning and a dose at night. This is the drug that comes out of your skin all over your body as it is processed and therefore, requires frequent baths to keep it from burning said skin. Based on getting his morning dose at 9a and the requirement for baths every six hours, Jennings will get a bath at 3p, 9p, 3a, 9a, 3p, 9p. Oh, and each one of those baths comes with its very own central line dressing change. That will be one clean 5-year-old and one tired momma. Lauren is taking the brunt of this one. Payback courtesy of our 2-night shifts, which landed me with the cyclophosphamide pees.
After Thiotepa, he will get Melphalan on Tuesday and Wednesday, along with Rituximab on Wednesday. Melphalan is a very toxic drug and is the one responsible for clearing out his existing bone marrow to make room for new cells to grow. This drug also goes by the name Phenylalanine Mustard, as in mustard gas. This is one of several chemotherapies that Jennings has received throughout his treatment that are derived from mustard gas, the chemical poison gas that first rained down on British soldiers in the trenches of WWI in 1917. Hard to get your head around that.
Meanwhile, I’ve started G-CSF shots in preparation for donating cells on Wednesday. It stands for granulocyte colony stimulating factor and it makes the bone marrow produce stem cells and release them into the bloodstream. That way, when my blood is collected, there are actual stem cells in sufficient quantities in my blood for the transplant. The only side effect is flu-like achiness due to your bone marrow working overdrive. So far, I feel fine and can’t distinguish anything from the normal aches & pains I have getting out of bed as an ever-aging man (I am now 90 years old if you ask J and it doesn’t feel far off).
Jennings has been keeping the rotation fresh between legos, transformers, Xbox Lego Jurassic Park, and dabbling in some homemade crafts. Mommy got a sweet new bwacewet out of the deal, pipe-cleaner purple. Every night has become “movie night” with the late afternoon / evening routine. We let him pick out a movie from the hospital’s infotainment system to watch while we eat dinner and wind down. I finally talked him out of another showing of Lego Batman tonight. Not counting previous hospital stays, I believe I’ve seen that one three times already and there’s no telling how many times mommy has.
I mentioned the appetite. Breakfast and lunch have been usual, non-events. Dinner, on the other hand, is a different story and is stuck on repeat just like the movie selection. He has been downing Chick-fil-A nuggets and a large fry almost every night for the past week. We’ve become Grubhub ordering pros figuring out how to make sure they know to meet us at the right gate outside of campus (no food deliveries to campus with COVID / security concerns so we get our steps in for each order). I had to rehearse several times in my head to build up the confidence to tell him that today was Sunday, and there would be no Christian chicken.
Despite all the Chick-fil-A, the past couple nights have ended like this. ☝️ A room service cinnamon roll for dessert. Yes, there is no sheet on his bed. Those are bits of icing littered about his clothes and head. And that is a knife in his hand that he insists is the only way to eat a cinnamon roll.
Jennings has also developed quite the reputation on the floor. He’s been in here now for 11 days being conditioned for a bone marrow transplant, yet he has twice the energy as any of the adults. Depending on his mood, he either plays tickle monster or a hiding game with anyone who comes in his room. He loves being tickled and would allow it to go on without ceasing if it were up to him. If there are two people in his room, as is often the case at shift change or rounds, he insists that both tickle him simultaneously. He absolutely loses his mind laughing, all of the veins bulging out of his skull. “Are you sure??,” they’ll ask. To which he always replies, “Oh, vewy, vewy!” He does not think it necessary to put the adjective after very.
The “hiding” game is better seen than describes, so here you go. This was a couple nights ago with Lauren and his respiratory therapist for the night….turn the sound up.
He definitely knows how to live with joy and keep everyone on their toes. Danielle, his NP, was in talking with me this morning. She did the tickle monster routine, even tag-teaming with the nurse, while trying to go over his labs with me and the logistics of the next couple of more intense days. Before she left, he asked her randomly, “Are you old?” (She is my age) He made her pull her mask down, take off her glasses, and let him smell her in order to verify. “You smell like my Gigi,” he said. Poor Danielle didn’t know what to make of it all. 🤣
Caroline took a trip back to Charlotte for the week for spring break. My mom flew in Friday to get her and got to spend some time with the twins and me. She was looking forward to getting all of the one-on-one grandparent time and having something to “do” during her week off of school. That means Lauren and I get some quality time with these tornados this week, whoever’s the “normal parent.” They get more and more manageable, and fun, everyday. They’ve also been “rushed” through their childhoods thus far, so it’s always nice to get some time to connect with just them.
We are looking forward to the big (although somewhat anticlimactic) day this week. Day 0, the official transplant day, is Thursday. For this one day, Lauren and I will both be allowed on the floor with him since it is such a significant event.
Please pray that this will be his cure. We were reminded again this week of his high-risk disease when we finally got the official pathology report from his last BMA. There is no detectable disease, but they could still detect the genetic mutation responsible for the MLL classification, although even this detection is below 1 / 100,000 cells. We’ve said it before, MRD or not, detectable mutations or not, this transplant will cure him of his disease forever or it won’t. Most kids who don’t survive on this transplant trial don’t die from transplant; they succumb to relapse and progressive disease. That is why we pray. That is why Day 0 is such a big deal. We hope in God’s power to heal and we find encouragement in the fact that this transplant trial is actually performed. Meaning, there are kids who survive.
In addition, you can pray
the Thiotepa bath day(s) go well
for strength as we really do enter some tougher days
Caroline will enjoy her week
for protection from sickness for all of us….there have been some sniffly noses and Jennings is entering a very fragile time as he awaits a replacement immune system
“Yours, O Lord, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O Lord, and you are exalted as head above all. Both riches and honor come from you, and you rule over all. In your hand are power and might, and in your hand it is to make great and to give strength to all. And now we thank you, our God, and praise your glorious name.” 1 Chron 29:11-13
#allinforjennings