We are that…together, all back under one roof. Lauren, Caroline, Charlotte, and Henry arrived Monday. The van and all of our stuff arrived Sunday night as planned, courtesy of some great friends back in Charlotte. The kind of friends where you know the answer you’ll get before asking for a monumental favor like driving a U-Haul and minivan 10 hours. Thankful for brothers like that and for time to catch up over a beer & a burger. Miss Cathleen came in clutch with some late Sunday evening babysitting to enable that part of the operation.

Monday came just in time for Jennings and me. We were running out of gas on ways to keep each other entertained. His last appointment last week was on Thursday where he got a boost of platelets to carry him through the weekend without having to go to the hospital. The 3 days with nothing we “had” to do made Monday seem like it might never come. But come it did, and the airport pickup was sweet. We parked and got out at the baggage claim pickup (there are no angry, whistling, overzealous traffic enforcement officers to prevent such an egregious breaking of the rules at the Memphis airport). We ended up being one bay of doors down from where they came out, which made for an epic reunion definitely worthy of a low budget Hallmark film. I use the word film loosely. The kids started waving and then took off running down the sidewalk in giddy excitement. Caroline and Charlotte practically tackled us, and Henry eventually did after he got over the realization that he had thrown his toy train into the drive lane in his effort to get to us first.

Jennings was excited for his siblings to each open their gifts that he had picked out for them. He had this idea on Saturday, so we picked out and wrapped a present for each of them. He “hid” them around the house and then promptly escorted each sibling to his or her respective gift. They all had fun playing with new toys and getting reacquainted with one another, and then Jennings rolled out Part II of his welcome plan. He wanted to take everyone to….drum roll….where else, but the Putt Putt Golf n Games. Since it was 39 and cloudy outside, he was fine just showing them the newly discovered arcade portion of the facility. Tennessee lifted some COVID restrictions recently and with it the ban on the arcade apparently.

It’s as deserted as the putt putt course during the day on weekdays, so it feels safe enough. Unless you’re one of those little pixelated aliens. They didn’t stand a chance.

Monday, as you can imagine, was a magical day. Tuesday, it was back to the reality of why we are in Memphis to begin with. The transplant workup process got started and wasted no time getting into high-gear. This was the appointment schedule from Tuesday:

We left the house about 7:45a and pulled back in the driveway just before 4:30p. Quite the day with plenty of highs and lows. Probably the best high was Jennings getting his COVID swab. We all get one weekly here at St. Jude and Jennings has had plenty before coming to Memphis as well. This was the first one that did not involve him being restrained against his will while screaming. The night before, I had offered up a Mario LEGO set if he would do a “good job.” Tuesday morning, he told me he dreamed about it and had thought about it and was sure that he could do the good job. He had an uncharacteristic look of determination about it and sure enough, he pulled it off. I was quite proud of him.

Probably the lowest low, if I do say so myself, was the process of yours truly becoming an official St. Jude patient and getting my labs drawn in preparation for being his donor. Despite this having been scheduled for several days, it took no less than 2 hours and several trips from the BMT (B) Clinic down to patient registration. My labs were originally scheduled for something like 10:30 that morning, but it was 1p before we got around to it. Granted, we knocked a couple other “easy” appointments during that time, but we did not make it for lunch. After the kind nurse took 17 vials of blood, no typo- 17, from my arm, she told me should would leave the needle in me until she got through scanning them all into the computer. You know, just to be sure. Que the lightheadedness. With no food in me and all that blood gone, I got woozy and was getting woozier when she called out for some juice. One sip from the kid-sized apple juice carton (after barely being able to fumble my way through inserting the straw) and I was instantly back to normal. Crazy how fast your body processes that.

Another high was his sticker change. He is back in a good groove being able to tolerate a dressing change with little issue. Child Life makes a point to come to these to help with the distraction and this time he lucked out with music therapy. He was convinced she was going to show up and play on the iPad with him like everyone else, but his line nurse kept betting him that she would be bringing more than one musical instrument. I knew who was going to win the bet and was worried we might have a poked bear when he realized it, but he actually got into it.

Multitasking. They sang songs about dinosaurs eating bananas and pooping their pants. At least those are the parts I can remember. The impressive part was the line nurse having to juke and jive to avoid him hitting her sterile gloves with his xylophone mallet. He did not seem concerned.

Today was another long day. He started with an ENT exam that was easy enough, we met with our social worker from the BMT team, and then he had an eye exam. Despite the great success with the swab yesterday, eye drops today were a total disaster. Probably some PTSD around his eyes from the chemo experience a few weeks ago. I usually do the holding down when required, but his nurse was a sweet grandmotherly lady who went to get help before I could jump in to do my part. She came back in the room and scooped J up, plopped down in the exam chair with him, and bear-hugged him while the other nurse got the drops done. She thoroughly enjoyed getting to squeeze Jennings, despite his yelling and attempts at escaping. When it was over, she asked him if it was really that bad. He said, “You squeewzed me too hawd!” To which she replied, “I’ve never had anyone tell me that before.” Good stuff.

After that, we hung out in the cafeteria during a longer break and got some school assignments done. That ship is taking on water, especially now that he is in the appointment-intense workup time. Once he’s inpatient, he may not feel well enough most days to do anything learning related. He will meet with the school program at St. Jude tomorrow to discuss how they may be able to assist. Just another example of how they look at the complete patient here. We are committed to helping him along and not giving up entirely.

He got this afternoon off and got picked up by Caroline & Miss Lee for an afternoon outside at My Big Backyard. I was not so fortunate and had several more afternoon appointments, which I attended by myself at a pediatric cancer hospital. A little strange seeing the same nurses for an x-ray or an EKG for myself as we have seen for Jennings.

Well, that’s enough for now. Maybe next time I’ll share a little more on the transplant schedule itself. It is confirmed that he will be admitted on February 17th to begin the conditioning process for the transplant, which will happen a couple weeks later. For now, you can pray along with us

• that he is MRD negative at his next BMA which will be one day next week (counts are still not recovering as of yesterday)

• that he will stay this way up until his transplant…relapse remains his biggest threat at the moment

• for the twins as they start a new preschool for 2 days a week next week…they and us both need that

• for C as we consider a local school (St. Mary’s) for her where she could be engaged in person and have something that is “hers”

• for my mental state as I struggle to turn on and off the different portions of my brain that need to be focused throughout each day here….from caregiver, to parent, to friend-dad, to husband, to advocate. I can too easily let that sap the joy from my day.

• for our marriage as we enter into another phase where we are handing off batons in a relay race with little time both holding on at the same time

Until next time, keep it real. Like Jennings in an audiology sound booth…laying down those sweet beeps.

The precursor to Jennings’s battle verse…captures how quickly we can lose sight of what God has done and is doing…a sentiment I am fighting often these days. This is almost immediately after God has freed Israel from bondage in Egypt:

“When Pharaoh drew near, the people of Israel lifted up their eyes, and behold, the Egyptians were marching after them, and they feared greatly. And the people of Israel cried out to the Lord. They said to Moses, “Is it because there are no graves in Egypt that you have taken us away to die in the wilderness? What have you done to us in bringing us out of Egypt? Is not this what we said to you in Egypt: ‘Leave us alone that we may serve the Egyptians’? For it would have been better for us to serve the Egyptians than to die in the wilderness.” And Moses said to the people, “Fear not, stand firm, and see the salvation of the Lord, which he will work for you today. For the Egyptians whom you see today, you shall never see again.” Ex 14:10-13

#allinforjennings