Chemical Sleep and Bon Voyage

The day Beaudin had his port put in, January 19th, 2019 a fellow met us in the surgery waiting room and asked if we would be willing to sign Beau on for a study that was seeking to understand the effects of methotrexate on kidney function. All we had to do was sign the last page in a 50 page-stack and then let the nurses collect his urine output for the next 48-hours. It felt straightforward enough, but it didn’t sit right. First, you are going to tell me my kid has cancer. Then you are going to tell me he has to have a medical device implanted in his clavicle, and while they are implanting that device you’ve come to the waiting room to ask to take his urine because the chemotherapy is so toxic that it may well wreck his kidneys. What’s next!!

The fellow said she would give us some time to consider, but they had to have an answer by end of day so that they could begin specimen collection.

Thankfully, Mimi was there.

My dear Mimi. The first time I was ever at Children’s Hospital was 3 years prior to take Jude to see a Cystic Fibrosis (CF) doctor and get a CF test. He was a sickly little one and no doctor could figure out what exactly was wrong. Eventually, a CF test was the next thing to check-off the list. I remember telling Joshua as we drove to the hospital, “Perhaps this is why God gave me Mimi? I mean, what better guide than your best friend?”

Well, as you may have guessed, turns out Jude didn’t have CF after all. I went back to thinking that perhaps Mimi was just a normal friend without divine reason.

In November of 2018, Mimi flushed her central line at our dining room table after Thanksgiving dinner while Beau looked on. Having dealt with CF since birth, Mimi is a pro at all things medical and so though this may read as bizarre, it’s not. She flushed and I explained to Beau that all that saline was going into her veins. He was enamored. ‘She what?!’ he giggled as he watched, bewildered. I would never have believed if you told me that two month later Mimi would be sitting with us in the surgical waiting room while Beau got his own central line.

Mimi has been in and out of the hospital her entire life, sedated more times than anyone can count, and involved in more trials than make sense. As Joshua and I hemed and hawed over signing Beau up for his first ever trial, she offered, “My general rule of thumb is that if the study doesn’t involve more pokes, I just let them have it. Like Beau isn’t going to use the urine, let someone study it.”

I still hated the idea, because at that point I hated everything, but I knew she was right. We signed the papers. Around the time surgery was meant to be finishing up, Mimi went home and Joshua and I waited to allowed back to the recovery ward.

A couple hours later I texted Mimi. Beau wasn’t waking up very promptly from the general anesthesia. “The nurse had said she would be out to get us in 20 minutes and that was 45 minutes ago,” I panicked. Mimi replied, “Of course he isn’t, gah, chemical sleep is the legit best!” I laughed through my tears because everything about everything felt scary, but I knew Mimi knew more about any of it than me. If she wasn’t worried, I would try not to be.

Eventually the nurse called us back and we were escorted through the recovery ward to Beau’s bed. He was knocked out, and though the nurse said he had rustled, he looked dead asleep. Joshua and I asked the recovery nurse repeatedly if it was normal how knocked out he was, and though she assured us it was, it didn’t feel right. I was absolutely positive that his excessive tiredness was proof he was going to die, right there, as we watched. The minutes ticked by and the nurse casually made comments like, “Goodness, he sure is enjoying this rest!” and “Gosh, will the child ever wake!”

Beau’s first chemical sleep, Jan 2019

Chemical sleep, I tried to lean in to the idea, but it felt impossible. I ran my hands through Beau’s hair and wondered when it would start to fall out. I looked back and forth between the monitor and his body to see if the slow rhythmic beeping matched the rise and fall of his chest. The entire time I watched the nurse out of the corner of my eye, waiting for her to make a movement that gave away that she was more worried than she was letting on.

After a while the team decided that though he wasn’t awake, he was “awake-enough” that we could go back to our inpatient room. We headed back to floor 7 and had tacos with Eric and Lara. Beau slept for 3 more hours.

Chemical sleep isn’t the only thing that Mimi has taught me about over the last couple of years. She has reminded me that no child has ever gotten addicted to opioids after bone marrow biopsies, so just let the pain killers flow because what is the point of this hell if not, at the very least, to enjoy a legal, drug-induced, high. She has told me time and time again to stop worrying about Beau’s schooling because she spent her entire 4th grade year inpatient at Children’s and turned out, more or less, fine. (She also then rambled off that her distaste for math and science could also be linked back to that missed year, “but whatever…”) She assured me that Beau’s port wouldn’t fuse to his bones because she had had one for much longer and it was fine, generally, “except the part they just had to leave in.”

She talks me off the cliffs and makes sure I don’t take myself too seriously.

But more than anything, Mimi has been a daily reminder that people can live really, really, beautiful lives with chronic conditions. That having a body that is unpredictable doesn’t mean you’re broken.

The other day I was feeling overwhelmed while giving Beau his subQ IgG, ruminating on the fact he may have to take it for the rest of his life. His whole life! A body that doesn’t really function, a medicine to keep him alive, I mean, what kind of life is that, anyway!?!

It’s Mimi’s life. A life I have witnessed first-hand. A life I am grateful for beyond measure.

The day before Beau got his port removed I texted my Eshet Chayil girls, of whom Mimi is a part:

Guys. Beau is getting his port out tomorrow morning and I feel like I am on the verge of a fucking mental break. I can only describe it as I feel like my insides are inside out. Excited. Horrified. Traumatized. Wondering what the fuck just (like the last 3.5 years) happened to us.

Within the hour they had each replied. Kind, thoughtful, generous replies. Replies that make me feel better and better that they are tattooed to my ribcage. Then Mimi called.

“Are you home?”

“Yeah, why?”

“Because I am in your drive-way.”

Mimi, who had been in Denver all-day for CF appointments, who was driving home through Longmont only because she needed to stop at the pharmacy 30-minutes from her house, made a long day even longer as she stood in my drive-way and listened to me unpack why I was a mess over the port removal.

“I just feel like when they put the port in I had no choice. It was traumatic and insane, and I don’t even remember it, but it was just like, ‘hi, your kid has cancer, may die, and needs this and ok, surgery is in an hour.’ and there was no time to process. But now. Now, like we get to choose to take it out. And I have been living for this day. Like, fucking living for it! And… I am just not ready. Like what if this is the wrong choice? And then the other day Jude asked if we were going to celebrate and I was like, ‘good god the 8-year old is more aware that we should celebrate this than I am.’ and so I told him we would, but like how do I celebrate when I am not even sure this is what we should be doing?!”

Mimi listened well as Mimi is prone to do then asked, “Well, how do you think you could celebrate?”

“I don’t know, I guess I just want to have like a ‘Bon Voyage Port’ party. Because really we don’t know if this is the end. And with all Beau’s been through, with all we’ve all been through, I just can’t tell them this is it. So ‘Bon Voyage!’…and then worst case we have a ‘Welcome Home’ party later,” I laughed as I said it all out loud because it felt absolutely insane.

“I think that’s perfect.” Mimi replied.

Before surgery you are asked 100 questions by 100 different people.

“Has your child had a cough in the last 14 days?”

“Does your child have any known blood clotting disorders?”

“Does your child have any known allergies to anesthesia?”

It’s quite redundant, but having answered these questions 1 zillion times it is easy enough.

“No.”

“No.”

“No.”

“Is there anything else you want me to know about Beau today?” The anesthesiologist added to the long list.

“No, I don’t think so. Except maybe that he is kind of hard to wake-up after all the drugs,” I laughed.

Beau was wheeled down the hallway to the OR and Joshua and I were escorted to the surgery waiting room. We cozied up on the purple couches and I relished that we’d have, at the very least, 1 hour to watch a show. I went to the lobby to get Beau the “every single thing they have” snacks he had requested after being NPO until 3pm. I walked back in to the waiting room and saw the corner by the fish tank, the corner where we had sat with Mimi, 3.5 years ago.

How far we’ve come.

Eventually the nurse called us back to recovery. We walked up to Beau making groggy demands for “a blue raspberry slushy!” before falling back to his pillow and zonking out for another couple minutes. I rubbed his head and whispered, “Enjoying it Beau, every last drip of that chemical sleep.” He grinned and I held back hot tears.

Surgery was scheduled for 10:30, delayed to 11:45, then pushed another 3.5 hours 2 hours, so by the time we were headed home from the hospital it was rush hour traffic. I turned the music up loud and sang along to what have become our hospital drive home anthems, “Fight Song” by Rachel Platten, “Wait for It” from Hamilton, to name a few. Beau finished the cheese-its, the popcorn, the yogurt, the smoothie, the gummy bears and 1 pint of strawberries and asked why we didn’t get him more food.

We got home and walked-in to the kitchen, smelling of the celebratory dinner Meemaw had prepared at Beau’s request, “I want the thing we have on New Year’s Day for Good Luck!” Read: Black eyed peas, collards, and ham hocks.

“The best part is, Mom, your friends brought us a cake!!” Jude said overjoyed, pulling me towards the the most emotional chantilly I’ve ever set eyes on.

The card reads:

Dear Larrabee Fam-

Bon voyage to this port. No matter there are more ports in the future or if this really is the end of the road- this port has been accessed for the last time! We are celebrating this milestone and the journey so far.

With all our love,

Eshet Chayil


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Read more about the port:

Dear Beau, on the day of your port removal,

Dear Beau, Last night you scored the winning run of your baseball game. I cried hot tears as you ran across home plate and into the dugout where your teammates crowded around you, everyone estatic. You struck out earlier in the game and were so down on yourself. The game had been a nail biter…

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For the fear of needles.

During December of 2018 and into early January, prior to diagnosis, before we knew what the hell this was, Beaudin had to give a lot of blood samples. Daily cultures, daily labs, tests to send to Clevland, to Mayo. Was it Epstien-Barr, AIDS, “just the flu”? He had over 30 blood draws and/or IV placements.…

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