I am wondering when I will stop counting up from March 29th (1st CarT transfusion day) as the basis of where we are at on this long, winding road. I suppose I could say we are:
Initial Diagnosis Day +887
CNS only Relapse Day +223
or perhaps I could look forward:
Next Philly trip Day -5
HuCarT trial Day, give or take, -47 to -61
Life with Cancer Day ∞
Yesterday Beaudin had his monthly IV IG infusion locally at CHCO. We had planned to give him the IV IG in Philly during the Month 3 testing, but since that trip was pushed, we thought it was best to give it in Denver this week. Though his b-cells are making a comeback (17% return last month, 39% return as of yesterday), they are not back with enough vigor to produce his own immunity. As such, he has to receive a transfusion of immune globulin (IG) which are antibodies collected during the blood donation process. Because it is a blood product there are inherent reaction risks, and more so since the transfusion is antibodies which, naturally, activate the body’s immune reaction.
With risk there must be pre-emptive reaction or something. That’s how it seems at the hospital anyway, and so, normally, they administer Benadryl and Tylenol as pre-meds before the transfusion. However, for the past 2 transfusions we have declined the Tylenol. It is a prophylactic med that many kids don’t end up needing and so we decline it and take a “wait and watch” approach. And really, as I re-read that sentence, I’d like to offer an unedited version of that peacemaking tone- I will be explicit that I say “no” to Tylenol because it is known to whack out the glutathione levels in the gut and can increase likelihood of intestinal permeability. It’s a hand grenade that is lobbed around like a water balloon. This is obviously an opinion, that differs greatly from the western Medicne team we work alongside, Hi, Dr.M. We never can exactly agree on the strength of our ammunition. And so we move forward and believe that survival merits leaky gut.
Really it’s everything in moderation I suppose. But Beau is not offered or dosed with Tylenol “occasionally”, it’s often. And most often, it’s prophylactically. So when possible, we decline. And most of the time that works out. We decline, he doesn’t need it. We dodge another intestinal permeability bullet.
It’s kind of hilarious that we are still putting up any kind of resistance to intestinal permeability. I mean, the child has been on high-dose antibiotics for weeks, low-dose weekly antibiotics for years, has had toxic chemotherapy for over 600 days, has had Tylenol over 10 times, I could go on. His poor little intestinal lining. And by hilarious I mean it’s the exhausted laughter that only the person on the hamster wheel really finds that funny.
Alas, we continue. Seeking to find the balance of wisdom vs. ego in our resistance.
Yesterday the IV IG transfusion started off normal enough. It is a 3-hour drip so once things get underway Beau relaxes back and drinks in the unlimited screen time. I was able to connect with his oncologist, which after our last hospital trip was really helpful. As expected, she was cool, calm, collected, and reassured me that we have really no idea what we are doing.
Just kidding, wanted to make sure you were all still here with me….
I mean to say, the road through relapse is a foggy one, so she didn’t have any answers or directions, but she did have a lot of confidence that we were taking all the correct itty-bitty baby steps in the right direction. For example, Beaudin still has the sinus congestion from last week that got the Philly trip postponed. The trouble is that this congestion could last for weeks because of his low immune globulin(IG) production. Which isn’t really trouble at all, but we need to get his Philly tests done asap… and they won’t let us come to Philly until he is congestion-free. So, instead of talking about the long-term survivability of CarT vs. transplant, we talked about taking some Zyrtec, like, today. And then another Zyrtec, like tomorrow. And really hoping that this clears by Friday, and if it doesn’t clear by Friday, perhaps dosing him with an antibiotic, just in case.
Have I mentioned how much I love dosing things just in case…
Dr.M and I aren’t ideating on long-term survivability of CarT vs. Transplant, we are literally figuring out how to get the snot cleared from his sinus’ so we can get to Philly next week to get the Month 3 tests that we need. That’s all. We need to Month 3 tests because we don’t know the current state of Beaudin’s cancer. We can assume the CarT, though not persistent, put him into a remission, but we are not sure how long it will last. And as of now, he has been +\- 12weeks without surveillance to assess where things are at.
Around the time that riveting conversation ended, Beaudin became upset that I wouldn’t go get him (his third) apple juice. He got out of the bed and started crying. It was out of character, but I wondered if speaking so (too?) freely with the oncologist was stirring something inside of him.
I am always trying to find the balance of letting Beau have awareness of what is going on, while also not overwhelming him with the intensity of his lot in life. Historically, we have doctor conversations in the hallway, out of each shot, but more recently we have been having them without as much caution. Obviously we are still careful to not be too explicit about topics like mortality, but we are more flexible using words like “relapse”.
As soon as he stood up to fuss about juice, he curled back in to bed, chattering his teeth, and began to cry harder. As I worked to soothe him, it became apparent that he was not emotionally reacting, but something physical was going awry. He was shaking uncontrollably (I know this because I kept saying, “Beau, you HAVE TO STOP shaking,” thinking he was kind of overreacting to the damn apple juice, and in spite of that he riggored on. Hindsight people, hindsight.) The oncologist called in our day nurse and the charge nurse and things began moving quickly.
As they took his vitals, they wrapped him in warm blankets, stopped the IV IG infusion, and encouraged him to take slow slips from the juice box we’d urgently procured. He refused the apple juice which was when I knew he was really working through something. His body was shaking more than I’d ever seen it. His pulse was reading 180BPM which is dangerously high, so we all panicked a bit until we decided the machine was “double reading” and his pulse was, in fact, only 90BPM. Oh, Phew. The urgency began to dissipate and we were able to get Beau distracted with an iPad that seemed to generally slow his chattering. All of his vitals looked great, his temp was 97.3F, so we turned back on the IV IG and our nurse went to lunch.
I sat down, for the first time all morning, and texted Josh and the babysitter about the delay. We wouldn’t be home as expected and thus someone else needed to collected Selah from school. I texted our neighbor, Selah’s teacher (and my dear friend), and explained that I wasn’t sure who would pick Selah up, or when. Oh Selah. I thought about how thankful I was for her flexibility, and wondered when it would run out…
Beau started to cry again, not in pain, but in annoyance that he couldn’t stop shaking. I went over to take his temperature, 38.3 deg C….Damn.
38.3 deg C. = 101 deg F.
I let the charge nurse know that he was fevering- something they’d all assumed was happening before, but dismissed when all of his vitals came back normal.
By the time we had everyone back in the room on the same page we decided to go ahead and stop the IV IG (he only had about 10mL left). His temp was up to 38.8C and it was decided that we had to administer Tylenol to stop the fever. The moment the IV IG was stopped and his line flushed, Beau perked back up. Though at that point we had to hang around until the Tylenol kicked in, aka his fever plateaued, which took about 45 minutes. Beau was worn out, but feeling ok.
The visit ended up being 2 hours longer than we’d expected. I drove home with urgency because the afternoon that we’d planned for him to rest up for his baseball game had been eaten up by the visit and now we were going to be pushing it to make the game on time. I felt crappy for the way things had gone down. Mainly because I default to feeling personally culpable when clinic visits…. well I was going to say, “when clinic visits don’t go perfectly,” but really I think the most honest answer would be, “I feel personally culpable when clinic visits….occur.”
Gah, codependence is a bitch. It’s a big enough bitch when you are just trying to untangle yourself from your spouse, but when you are trying to walk along side your child with cancer…. yeah, well anyway.
Mainly, I wish I gave Beau more credit. I wish I defaulted to knowing that he could really be working through some crap. Instead I default to, “Beau, you have to try to stop shaking!” as though he can power through his body goes from 97.3-101.8 F in <20 minutes.
It’s kind of like being told to “calm down” when you nervous system is on fire.
Alas, the cancer path is never short on opportunities to reflect. So I spent a couple miles considering all the ways I could have [been perfect] and then threw on some Hamilton and rolled down the windows and played the music loud while Beau and I sang along.
We arrived home just in time to toss Beau into Joshua’s car for baseball. Beau hadn’t been sure he’d be able to play the whole game, but knew he wanted to give it a try. His team is in the play-offs, after all. I decided to stay home. That, in and of itself, felt like a radical act of self-compassion because despite weighing the dark swirls of “but what if this is his last game, like, last.” I knew that I was emptied out from clinic and needed to be home, resting my heart, and my ego.
Despite 5 hours at clinic, benedryl, Tylenol and a high-fever, Beau helped his team secure a W, pitching a three-up, three-down win. Their season continues, it wasn’t his last game after all.
Let this be so.