Enter the Check-up Phase
Jennings and I just returned yesterday from, hopefully, the first of many check-up trips to St. Jude. It’s hard to believe we are in that phase already. Technically he was there as soon as he was discharged from the unit, but it definitely has a different feel once the appointments space out and start to require a trip vs. a few minute drive.
All of the important stuff got done and went the right way, but these trips always seem to have a dysfunctional feel to them. I should have taken it as a sign of things to come when TSA pre-check didn’t populate on our mobile boarding passes. The line for customer service to get that fixed seemed too long to be worth it, so we opted to brave the regular security line. It took us about 45 minutes to get through, which is not the end of the world but close to it with a six-year-old in tow and is considerably longer than I’ve waited in years. Once on the plane, we got the old “maintenance issue” from the pilot which delayed our departure about half an hour. Conveniently, the fix involved turning the heat on full blast for several minutes while the plane baked in the July sun.
Once in Memphis, we shared the shuttle from the airport with a 13-year-old girl and her dad, also returning for her first post-treatment check-up from a brain tumor. J was cracking me up on the ride. He’s normally a little shy and reserved, not into talking. Weird, I know. But after he gave the girl his little stiff wave and she responded, he started talking and didn’t stop until we got off. He told them all about how he would have to get a poke the next day because he had gotten his “wine” out. He told them about our family, doing the math every way possible. “If you include me, there’s four kids. If you include daddy and mommy, there’s six of us. If you don’t include me, there’s three kids.” And so on. He said he had two friends, Charlie and Jason, but that he wasn’t sure they would “ahmemba” him. Pretty sure he was not remembering that he has already seen both of them since being home. Anyway, Mille Grace, one of his neighborhood friends, got a mention along with all of his favorite neighborhood dogs: Zoe, Diega, and Daphne.
Once at St. Jude, we had to go straight to the hospital for a COVID swab before we could check into housing. Don’t have to wait for results, but have to get swabbed…? That’s bad enough, but it was compounded for us since he was still on isolation from the parainfluenza from over a month ago and it was after normal hours. The isolation piece added considerable time to the process and it was around 8:15p (felt like 9:15p to J) when we finally got into our room. I remember because that’s about the same time the Grubhub driver said she dropped off our Chick-fil-A…except she didn’t actually drop off any CFA.
Wednesday started early with 7:30a labs. We were once again confined to an isolation exam room in the BMT clinic. The poke was a struggle, as was the one he had in between in Charlotte. It’s all fear and anxiety; the anticipation far outweighing any actual pain. Once the needle is in, he calms right down.
So far, all of the results are good. His weight was back up to 18.5 kg which is about his post-transplant high. That credit goes to Lauren for the nightly ice cream sundae idea. Almost every night since his last weigh in he (and usually sissy) has been having ice cream with chocolate syrup, sprinkles, and sometimes M&Ms. Any weight is good weight right now and this has been working.
His labs looked good as well - his CBC looks great and most of his chemistries are within the normal range. His chimerism from the interim visit in Charlotte was 100%, but it will be a few more days before we have those results from this trip.
The one downer was the repeat nasal swab for a virus panel. He is still positive for parainfluenza. 👎👎 That’s the thing about getting something after transplant…it just takes forever to completely clear it, even after symptoms have resolved. So, he will remain on isolation protocols until our next visit when he can try to test out again. As a result, he had his scheduled PT & OT appointments in the exam room in clinic. Way less exciting than getting to go down to those clinics, but he has progressed well in both areas and is back to normal with the exception of grip strength in one of his hands.
We did get to leave the room briefly, with an escort of course, to go down to imaging for a CT. That was a huge win. The fungal nodules once a concern in his lungs are all gone with the exception of one and it has shrunk by half its size. Infectious Disease is now ok with taking him off of antifungal medication. 🎉🥳🙌 That particular medicine has been a thorn in our side for months and months. It will not be adequately absorbed if taken around food, so it has to be given one hour before eating with nothing to eat for at least one hour after….morning & night. For mornings, that has meant giving it as soon as he wakes up and then not letting him eat breakfast for an hour. At night, since we have been encouraging eating at anytime, he usually eats something right before bed. So, I wake him up at least an hour later to give him the medicine…except he is impossible to wake up. By impossible I mean that I have to sit him fully up in bed, holding him up with one arm, while I attempt to follow his wobbly head around trying to stick the syringe in his mouth. After sometimes several minutes of this, he will close his mouth around it and let me squirt in the medicine. All while still asleep. Hooray for the end of that!
We made it back late last night with typical summertime thunderstorms sprinkling in a touch more dysfunction. We got close to Charlotte and had to circle in a holding pattern for about 30 minutes due to the storms. When the airport finally reopened and we were able to land, the taxiways looked like I-77 at 5-o-clock. The pilot came over the intercom and, no joke, said in a straight voice, “It’s just going to be a few more minutes until we can get to the gate. The tower has informed us that there are 28 aircraft in front of us.”
Clockwise from top left: a well-rounded vending machine dinner at 9p, courtesy of a Grubhub fail…and isolation protocols that prevent us from entering the cafeteria. Our six-year-old travel pro. After three hours in the same room, you have to get creative to find new & fun places to watch the iPad with your wom bwanquet. Thirty minutes in the same spot on the tarmac with a dead iPad and the stir-crazy six-year-old started to come out. 😬
You can pray for his chimerism result from this week and the RT-PCR analysis that has yet to be run on his last bone marrow (due to an oversight). That is the test that will show if the MLL gene mutation is detectable in any cells. You can also pray for next week. He will be getting a 5-day course of azacitidine as part of the proactive therapy we are pursuing. This is a low dose chemo that he both tolerated really well and responded to really well, so hopefully it works as intended this time around. Since he no longer has a line, it will be administered via a subcutaneous shot each day. Plus, on Monday he will get an IVIG infusion as that is slightly low and on Thursday he will have labs drawn. That is a total of seven needles in five days, so it will be a tough week…plus the (hopefully) minor side effects from chemo.
You can also pray as we continue to navigate “re-entry” as I’m calling it. This is the soft & squishy side of childhood cancer. Yes, he is essentially out of treatment and has successfully made it through in relatively good shape. But, even if he is cured forever, our lives have been completely scrambled twice now in three years. That leaves you asking yourself some fairly big questions. I think right now, for me at least, it is easier to put those questions out of mind until after vacation / summer. I’m sure I’ll find another reason then to continue to put them off…maybe it will be that for the next two years (Lord willing) we will live in the reality that any of these check-ups could swirl the pan of our lives, re-scrambling them once more. If you focus on that, it seems pointless to ask, let alone think through, any bigger questions. You can pray that we find the right tension in all of this…hope for this life yet knowing true fulfillment will be found in the life to come.
Here’s us trying to live in these moments, summertime style.
Happy late 4th of July! Fort Mill fireworks lighting up J & Caroline’s eyes, Kona Ice tongues, and the annual neighborhood decorated bike (or in C’s case, ride-on pony toy) parade.
Clockwise from top left: Nope, that’s still not a secret 5th…we overnight babysat for our niece Margot, J was all about her and was constantly correcting my attempts at babysitting. We got our new couch!…the fruits of L’s trip to Charlotte paying off. Our best bike rider ever, zooming around our circle at three. A break from biking to play with Daphne, the next door pup (it’s as good as having a friend with a boat).
J goes back to Memphis the first week of August. Pray that he stays in the clear through that. The following weekend we’ll attend the Claire’s Army gala (if you’re local, click the link and buy a ticket…if you’re not, click and donate) and leave for our trip to the beach the next day.
“According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith - more precious than gold that perishes though it is tested by fire - may be found to result in the praise and glory and honor at the revelation of Jesus Christ.” 1 Pet 1:3-7
#allinforjennings