New Look
It started on Monday. I had gone several days without sneaking a hair check. I gently and discreetly, if pulling someone’s hair can be done discreetly, ran my fingers through his hair clamping down slightly on the way out. I got more than I expected and way more than I have over the past week. I had been chalking up the usual few here and there to a lack of hygiene (last shampoo was pre-Thanksgiving), not chemo. It is not worth attempting a hair washing on a 5-year-old with a central line. I figured the bounty I got Monday marked the beginning of the end. Sure enough, come Tuesday it was ripe for the picking. It wasn’t falling out of its own accord, but as much as you wanted you could pull with ease. Today, his pillow told us it should be haircut day.
We set up the video camera to capture the moment, and potentially use as a DIY how-to video on my YouTube channel…stay tuned for that gem. I’d say Miss Tiara’s turf is safe. We also FaceTimed with mommy and the other kids got to see so it won’t be such a shock. Before starting, I prayed that this would be the last time. That in a couple months his hair would start growing back post-transplant, albeit in that stiff, grayish way. I prayed that this next round of hair would be with him until it turns gray and begins to fall out on its own in his old age. God, let it be so.
#newdo
The good news is that he doesn’t seem to mind. He asked me to hold him up so he could see in the mirror afterwards. He agreed that it looked good and just said, with a shrug of his shoulders, “I just don’t wook wike myself.”
Medically, he continues to do very well. We spent Saturday at the Jude getting blood and platelets. We arrived about 12:30 for his labs to be drawn and walked back into Lee & Dave’s house about 9p that night. Incredibly long day (lots of unnecessary waiting mixed in), but it was good to get it all done in one shot. He had labs drawn again yesterday and things are looking as they should. Counts are still bottomed out, as expected, and we’ll go back in tomorrow for another lab check. Based on the trend, he’ll need another platelet transfusion tomorrow.
Side effects from the chemo, other than the new look, are dwindling to nothing. His eyes and skin are all looking good. His stomach still bothers him from time-to-time (several times a day), but not bad enough to vomit or stop him completely from eating. This is attributable as much to the Vancomycin (IV antibiotic) that he is on twice a day as the chemo.
In other news, we have shifted gears on L’s return to Memphis. She was originally scheduled back yesterday, but we made the call over the weekend to move up the move. She and the rest of the gang will fly out to Memphis next Monday. With Jennings doing well and a gap until February 17th in heavy treatment, we figured we would capitalize on this time and get us all together. Friends back home are helping pack up the van and a small truck this weekend, and then two close friends are driving them out to Memphis on Sunday. Lauren and the kids will arrive the next day…and we will all live happily ever after until Jennings gets admitted. 🤣 We have been apart for a month, but are not that naïve. But, we will be together and that’s what we are after.
This is Lauren’s current state. My head hurts just looking at it. I have enough trouble remembering socks and a toothbrush, let alone trying to pack for four kids to live in another city for 4+ months. This time the baby bottles, formula and cribs are replaced by Camelbak bottles, baby dolls, and remote control trucks.
We have a few (hundred) prayers for this transition that we would love for you to join in with us.
That everyone would stay healthy through Monday and remain so once here under one roof. In true “never a dull moment” fashion, Charlotte had a fever Sunday into Monday. Jennings is still neutropenic and though his energy level and overall appearance might fool you, he very susceptible to infection right now. An infection at this point could mean a delay in transplant. A delay in transplant is not something we want to think about.
That the logistics of everything would work out as planned. So many selfless friends are working to make it so and we are incredibly grateful. Pray for a safe drive for my brothers and a smooth flying experience for L & the kids. Char Char convinced mommy to spring for first class 😉. Actually, that will probably happen next time. This time, it is helping limit exposure and maximize L’s chances at managing everyone.
That patience, love, and joy would mark our time together at Lee & Dave’s. We will have a little more than two full weeks under one roof and want to be good stewards of that time.
That we would find a nanny or come up with a plan for the inpatient part of transplant. L & I will be trading off inpatient shifts with Jennings. Logistically, physically, and emotionally we are skeptical that we could pull that off while single-parenting Caroline, Henry, and Charlotte.
We continue to be given warm, sunny days amid the gloom of winter. Fun & funny letters to read, packages from those we have never met, friends & family ready at the drop of a hat to sacrifice time and effort, Jennings showing thankfulness for the love he has been shown and compassionately asking me to “put a piece of money” in a card to a brave little girl, Jennings spontaneously starting to pray for his dinner 2 nights in a row - once thanking God for Miss Lee coming to play and once for getting to see his K teacher on zoom, a visit from a from a fellow battle buddy that shared the BMT floor with us almost 3 years ago. We are blessed.
One of his transplant floormates, back for her 2-year post-transplant check-up. A gigantic well-visit about 8 months late. We were happy to see them and the hope they represent. Jennings was especially happy they stopped in after he tried the King Cake they brought. It makes Hulk smile like:
He just saw this picture…."When I look at King Cake, I just want a PIECE!!”
“Then the Lord said, ‘I have surely seen the affliction of my people who are in Egypt and have heard their cry because of their taskmasters. I know their sufferings, and I have come down to deliver them out of the hand of the Egyptians and to bring them up out of that land to a good and broad land, a land flowing with milk and honey’” Ex 3:7-8
#allinforjennings