On the Rise
As in Tom Brady’s age. Potentially Patrick Mahomes’ number of rings. And, Jennings’s counts.
His ANC was showing signs of life at his labs on Thursday and count recovery was confirmed today. Since his platelets and hemoglobin had both continued to drop on Thursday, the team scheduled labs again for today. Not many Saturdays off around here, but it was a fairly quick visit as both his platelets and hemoglobin had also started to recover. He made it through this round with only one blood and two platelet transfusions. Not bad.
Next week the busyness of pre-transplant business continues. Multiple appointments every day except Thursday. Friday is the big day where he will have his next bone marrow aspirate. We are glad that it’s Friday as his counts should be well recovered by then, which will give us an accurate picture of MRD. He already had a scheduled sedation that day for a PET-CT scan as part of his workup, so it made sense to combine the BMA with this versus another sedation earlier in the week.
We’ve had a good end to the week and start to the weekend. When I’ve had the three, we’ve checked out a couple of parks that Jennings & I advanced for them over the past month. They approved of our work.
Charlotte enjoys defiance. In that spirit, she defied the odds and managed to fall through the webbing in the bottom right picture. She is also fiercely determined. In that spirit, she impressively caught herself and hung by one hand, looking quite concerned, until I could get to her.
One evening, I instigated a Nerf gun war with the younger 3. Only Jennings could operate one of the guns on his own, so I reloaded for Charlotte and Henry. I had the most fun watching them shoot each other. Before this I have been unable to convince him that it might be fun to have a battle with them. I guess when someone shorter is pointing the Nerf gun at you, it’s less intimidating.
Yesterday, we went to The Art Project, a local art studio for kids. We had an hour to do whatever we wanted, a sweet gift from one of Lauren’s friends. Their slogan is: “You make the mess. We clean it up.” The perfect place for our kids. Too bad they don’t mean they clean you up as well. Despite an apron, Henry left with a different color shirt and Charlotte added some red highlights to her hair. It’s an art free-for-all for kids and they had a blast. This was my portrait of Charlotte, followed by some real artists at work:
We followed that up by finally finishing Season 1 of LEGO Masters. Jennings entered treatment with two episodes left and we made a pact not to watch them until we could do so all together. So last night, complete with family style nachos, was the night. For a cool $6 (of course they disappeared from Uverse on-demand and Fox has virtually no streaming here), we watched both remaining episodes. Some of the best money we’ve spent. Jennings had to hold back some tears when Mark & Boone didn’t win the finale, but it was the most animated we’ve seen them watching any form of competition. No offense, Dabo & Trevor.
We’re doing our best to soak up this time. We’ve got another week and a half or so together, then we’ll be separated and J will be knocked down pretty hard by transplant. The initial schedule goes something like this:
If you followed last time or worse yet, have personal experience in this world, you will remember that the big day is Day Zero. This the official transplant day when Jennings gets the new stem cells: March 4, 2021. In this haploidentical transplant, he will get cells again on Day +1. After Day Zero, the calendar counts up and those numbers are used as benchmarks in the transplant journey. If all goes well, somewhere around Day +14 to +21 he will be discharged from the inpatient BMT unit. Typically around Day +30, there will be a BMA. And somewhere around Day +100, another BMA and you can return home.
The days before transplant, once admitted, count as minus days going up to Day Zero. Last time around, he had something like 10 minus days whereas it’s 15 for this one. In the calendar above, each minus day is labeled with what he will be given on that day. If you’re like me, the first three minus days may have jumped out at you. He gets rabbit ATG. Yes, rabbit. Also known as bunnies, or wascawwy wabbit if you’re Elmer Fudd. The alternative is horse ATG, so I guess he lucked out? It is basically an immunosuppressant drug used in this case to calm his “host” immune system down. Reactions are fairly common, so he’ll be pre-medicated with Benadryl and Tylenol before the slow infusions.
After that, he gets two rest days and then one day of Cyclophosphamide. He got this chemotherapy with his last transplant as well. This lovely drug has a tendency to sit in and irritate the bladder. So to counteract this, you are forced to pee often. Like every TWO hours often. For 24 hours. Last time around, Jennings was in diapers so this was much easier. Load him up on IV fluids, change diapers regularly, and make sure they’re wet. This time will be a little trickier. L and I will probably coin flip on who gets to cover this day versus Day -3. Thiotepa is a chemotherapy that comes out through your skin once processed by your body. If left on the skin, it will burn and irritate, even causing open sores. So to counteract this, you are forced to bathe often. Every six hours for 24 hours. Along with each soap and water bath comes a central line dressing change as well. Jennings has come a long way with “sticker changes,” but they still take 25-30 minutes and are filled with anxiety for him. This will follow five days of fludarabine (typical chemotherapy) so he will be feeling pretty miserable by this point. Should make for a great day, and even better night.
St. Jude gives you printouts on each drug, factsheets mostly focused on side effects. For each of the drugs on the calendar above, the top two side effects are nausea and vomiting. Nausea, vomiting, nausea, vomiting, nausea, vomiting. They could save some paper and just put nausea, vomiting, and loss of appetite in big 24 point font.
Our prayer requests remain mostly the same. Caroline got accepted into the local school, so she will start there next Wednesday. You can pray for her transition. We are still looking for a nanny / helper. Lauren managed to interview three last week, in addition to placing three children in two new schools. We thought we had a winner, but she ultimately declined the offer since it is short-term. So the search continues there.
Thank you all for reading, following along, and most importantly praying. We are grateful for your support and will need it more than ever as we enter into transplant.
“Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ.” 1 Pet 1:13
#allinforjennings
PS - I had to post this picture, sorry.
small bear, big wheel