All Shook Up
We’ve had a solid run of plenty of feel good days, but those have fizzled out for awhile. Jennings is getting dose #7 of 8 right now. We had the pleasure of arriving early for this one, complete with overnight bags after he woke up from nap around 5p with a 102 fever. We fully expected to have to be admitted tonight, but getting one to break in our favor, will be able to go home after the chemo finishes. His ANC is still 1800 as of today (which is actually the low end of normal) and the threshold for admittance with a fever is an ANC below 500. He will be below that in another couple days and the Ara-C fevers typically plague him for 5+ days, so we’ll probably leave the bags packed.
Up until late yesterday, he has been powering through the week and we’ve been incredibly encouraged watching him be as close to a normal 5 year-old boy as possible. He is a true warrior. He’s been thumbing his nose at the Ara-C all week. We knew it would eventually catch up with him, but it was inspiring to see him take 2 infusions a day and then find the energy & inner joy to live.
On Wednesday, we took him to a great playground at Overton Park near the zoo. The plan was to do the zoo while his counts were still up (post-transplant this will be a no-no), but COVID had other ideas and the place was closed. The park was a nice substitute and he got to interact with some other kids his age, carefree and full of energy. We all 3 chased each other, had sweetgum ball fights, and Jennings & I risked an indecent exposure charge finding a tree mostly hidden from the greenway trail (COVID strikes again with closed bathrooms). The reward for a hard afternoon of play sandwiched in between 2-hour chemo infusions was Gibson’s donuts. A Memphis staple and so so good.
Yesterday, although feeling nauseous from the chemo, he asked Lauren halfway through the morning infusion, “So, what are we doing today?” We threw out a couple ideas and he chose Graceland. I did not see that coming, but was actually excited that he picked it. We’ve spent much time in Memphis, but have never made it over there. He slept in the car on the way there and wanted nothing to do with food, but perked way up once we got there. Almost as if he’s learned to conserve and harness his energy for the short amounts of time when he really wants to use it.
We all really enjoyed the visit to Graceland, even Jennings. Being somewhat afraid the idea might have sounded better than the reality, we did not have high expectations going in. But before the shuttle had even left the ticketing area for the house, Jennings exclaimed “This is fun!” Elvis sure seemed like a fun-loving guy from the opulence and eclectic feel of his home & possessions. My favorite was a kid-sized go-cart with a giant motor in the car / vehicle museum. There is a picture of Elvis on it, probably 30 years old, smiling ear-to-ear racing it down the driveway of Graceland.
Later that evening, the nausea and stomach pain started to increase. While carrying him through the empty hall from the screening entrance to the Medicine Room (he falls asleep on the way to chemo every night, poor kid), I told him that I was sorry he felt so lousy and that I wished I could take it from him. He told me I couldn’t, as seriously as if I thought I could and then asked me if I knew the one who could. “God?,” I asked. “Yes,” he said then asked an incredibly insightful question….”but why doesn’t he?” I gave my answer about his sovereignty, his goodness, but yet our limited knowledge and understanding of his plan for each of us. Jennings kind of cut me off and said, “Maybe he’s helping other kids.”
We are praying for the side effects to hold steady and begin to subside as the chemo begins to leave his system. It is such a toxic drug and I can’t begin to imagine how he feels after 4 days of it. When he got home this morning from his infusion, he got down on the floor on his knees in the fetal position and asked to stay there…so we covered him with a blanket and got him his pillow & the iPad. He is already starting to develop a rash. The small veins in his face are showing out and the area under his eyes is so dark. It makes you look almost as sick as you feel. We know he can weather it; we just ask for mercy as he does. We also pray that it does what it has been infused in there to do: kill the remaining AML and keep it at bay until he can get to transplant. With his genetic mutations, his greatest risk and our greatest fear is relapse. That is what gives them the poor prognosis classification…relapse, even relapse during treatment.
Another heavy topic we have been wrestling with is the other 3 kids. We have been continuing to talk through and think through when and how to bring them out. It is hard to be broken up as a family, but putting us all back together is not without its own challenges so we are striving to find the right time. You can pray for wisdom and discernment as we navigate this.
Caroline and the twins are so well loved where they are and they are doing fine, but it is still hard. It’s hard to see the slight looks of confusion on Charlotte & Henry’s faces when they see me on FaceTime yet again. It’s hard to hear their questions that show the lack of comprehension of this trial….why they’re not home, why I’m not around, why Memphis. They were born into the midst of the chaos and trauma of Jennings’s initial diagnosis and this led to an estranged relationship on my part. It’s really just been in this last year that this brokenness has started to heal and our bond has really started to cement. Now it feels threatened yet again.
We are all looking for strength. For Jennings, strength to endure this punch, shake it off, and recover prior to the next one. Lord knows it’s coming…bigger and stronger. For us, strength to balance the competing demands of 4 kids…1 facing a life-threatening disease and 3 others who need to be loved all the same, strength to maintain our marriage, strength to manage the ever-increasing demands of caregivers. Fortunately we know where to look. It is not in ourselves.
“The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength.” Isa 40:28-29
#allinforjennings