HuCART: Month 6 results Part 1

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*unedited, sorry for typo’s*

Part 1- LP results

On Tuesday Beaudin had his 6-month, post HuCART procedures. As you’ll recall, his b-cells retuned in late December and despite returning to Philly and doing a boost in January, continued to come back strong. 6-months was technically February 8th, but because we were hoping the boost would work and he would remain in b-cell aplasia we didnt go to Philly until the following week. Unfortunately, the tests were delayed because of head cold Beau was slowly working through and they pushed the tests for 2 more weeks to allow for his full recovery. In this time he received IVIG which helps bolster the immune system and he was able to recover in full.

On Sunday morning, in the pre-dawn hours, Selah, our 4 year old, woke-up throwing up. The stomach flu had struck. We had a very long Sunday helping her work through her first experience with it. At that point I was ready for everyone to start dropping like flies. By Sunday evening Beau was saying he, too, felt queasy. But come Monday no one was any worse for the wear. Beau continued to not feel great, but without active vomit, we were not going to delay the procedures yet again.

By Tuesday morning Selah was more than 24 hours symptom free and able to return to school, Jude and Meemaw had a special morning planned and so Beau and I headed to the hospital. Normally appointments that include a sedation procedure are scheduled very early in the day as the patient has to be NPO (can’t eat or drink). However this appointment was not until 10am. Beau woke-up feeling queasy again and was begging for some “clear liquid that’s not water!” (he knows the protocol! ha, “no food after x amount of time, only clear liquids until 2 hours prior.”)

We were already within the 2-hour window, but I did fear he would actually throw-up on an empty queasy stomach, so I ran quickly to the store to get him some apple juice. I knew that by the time we got checked-in and everything we actually had a bit more time before the 2-hour window, but not much. I hurried to the store and back and told Beau to down the juice boxes. I am sure 16 ounces of sugary apple juice is helpful on a potential stomach flu, empty stomach, right?

Anyhow, in all that hustle and bustle we forgot to apply EMLA cream to numb his port area for access. However, we were running a bit ahead of schedule, so we figured we would just get it from the hospital upon arrival and have time for it to soak in. Once we had checked-in and applied the EMLA cream in the lobby, they called us back within 10 minutes. Beau started to tell everyone who he came into contact with, “I need more time with my EMLA.” and they all affirmed him, “yeah, we have a bunch of stuff to do before access.” But he knew, he knew they weren’t really listening. And sure as shit, when the nurse starred the unpack the sterile access kit, we both knew that he was not going to have had enough time to be numb. He protested again, and they gave him some lip service that in hindsight was super frustrating, but in the moment I missed. I was worried about keeping the peace- keeping Beaudin calm, because I could see we were moving forward either way. Beau continued to explain, “I haven’t had enough time! I need 45 minutes.” And the nurse placated, “I think you are good sweetie…”

Well, he wasn’t good. He was not numb. And as soon as the needle went in the tears began to fall. They weren’t hysteric sobs, they were worse. They were the painful weepy tears that fall when you are both in pain, and furious that no one has listened to you. He cried the hot tears desperate to steady his breath, and I leaned down and held his head to my chest. The moment I pulled him in he sobbed. Once the needle is in there is still a multipart process that takes up ~3 more minutes before the access is complete.

“I’m sorry bubba,” I no more than whispered as I stroked his hair.

“I told you. I told you I needed more time…I hate my life… I hate my life.”

“I am sorry sweetie,” the nurse quietly added, moving slowly to complete the access.

It was a really shitty moment. Access usually goes seamlessly for Beau and it’s easy to forget how hard all of this is, how much we all carry into these moments. He continued to cry for many minutes and repeat, “I hate my life….” and the nurse and I held a sacred space where we both didn’t try to talk him out of it. We used quiet voices and gentle touch and just sat with him, all of us knowing that the moment was unexplainable.

I was so proud of us. Him, me, the nurse. The ideal world would be for us not to be here and here not to be employed but life’s not ideal. It real and rugged and raw and there we were, all showing up trying to do our best, falling short, and holding each other for the fallout

Thankfully, Beau recovered quickly once the access was all said and done and was eager to get his procedures underway asap, (“So I can get this stupid, painful needle out of my chest!”)

Since our case is a bit specific, we request that our primary oncologist do the procedures as opposed to the PA that normal runs the procedure room. There was a bit of confusion about which tests exactly were needed for CHOP and the study, but after a quick phone call and a couple more orders, that was all squared away. He would have a lumbar puncture to check his spinal fluid, a bone marrow biopsy and a bone marrow aspirate. Multiple samples of each to check locally, send to CHOP, and send to Seattle.

Beau and I went quickly to the bathroom and upon returning he walked into the procedure room, instead of the waiting exam room, and asked if everyone was ready. The team thought that was quite funny. He hoped on to the exam table and starting directing traffic. He was confidant and comfortable. I watched as the propofol entered his system and he went from aware to asleep.

Oh the highs and lows of all of this! One moment I am stroking my weeping son’s head as he cries that he hates his life, and not but 15 minutes later he is hoping on the exam table and listening as the team details that they will take both a liquid sample and a core sample of his bone marrow.

It used to be that we couldn’t even use the word bone marrow in his presence.

I went quickly to the hospital lobby to grab Beau a couple post-sedation snacks, as he always wakes-up ravenous. As soon as I returned to the recovery room the recovery nurse mentioned that they were almost done.

“Really? Wow, that was fast.”

“Well, yeah, I mean you’ve got Maloney doing it.”

I didn’t know exactly what she meant, but the comment gave me a warm feeling inside. The benefit of being an extreme case is that you are given the best of the best. Within moments Beau was wheeled into recovery and I watched him as he slowly emerged from the chemical sleep.

He woke-up seamlessly and, half-sedated, shoved popcorn into his mouth. He is always silly in his partial coherence. The nurse and I laughed at him and he grinned. The nurse was pregnant and we chatted about the name of her little one. Beau spoke-up, “and the middle name?!” And we laughed and she said it would be James after her father who had died when she was 14. I asked her to tell me about him. So she did. As we stood on opposing sides of the stretcher both caring for my son, she told me about her daddy, and about her daughter who would know him even more by being his namesake.

Life is so fragile and so full and so heavy and so good.

Beau asked to go to Lucille’s after the hospital for “eggs Benedict, and beignets, and grits,” and as we have been having trouble to get him to eat much of anything these days, I happily obliged. We walked up and realized it was the perfect day for cajun food because it was Fat Tuesday! What a treat. Also, the owner of Lucille’s, a kind man named Fletcher, was there and we were able to chat with him briefly. Perhaps because it’s been my favorite restaurant since 2004, but it feels special to take to the owner. Beau enjoyed only a couple bites of three huge entrees and I couldn’t care less of the waste. He was here, we were whole.

A MyChart notification pinged my inbox as we were finishing-up. Frantically I clicked through the multiple steps to access the results. His first results, CSF cell count (lumbar puncture, spinal fluid) were in.

1 CSF nucleated cell.

Fuck. Ok, deep breath. Fuck. Fuck. Fuck. Stop. Ok this has happened before. Damn it. Fuck.

The spinal fluid is a closed system that should not have any nucleated cells in it. The result should be zero. And it had always been zero, until he relapsed. Now we’ve come to learn that there are a handful of scenarios when a nucleated cell can appear in the spinal fluid, and not be a cancerous blast, but they are rare. Having any nucleated cells in the fluid is cause for concern, until you know otherwise. I knew the manual differential wouldn’t post for around a hour. I looked across the table and wondered if this would be that moment. The one before hindsight. The moment before everything changed and we went from celebrating Fat Tuesday at our favorite local restaurant to being hurled towards a bone marrow transplant.

Two hours later the manual differential posted to MyChart and I frantically clicked through again. No Blasts. No cancer. 20 minutes later our oncologist called and confirmed the results. “Spinal fluid is clear. Now we wait for bone marrow.”

We arrived home and shared our left-overs with Jude who was very pleased as eggs benne from Lucille’s is his absolute favorite. The sun was shinning and the temperature was going to hit its highest of the year. I went outside and watched Selah jump on our trampoline with her neighbor best friends. Their mom, also my friend, came to join me. I shared with her our results. She hugged me fiercely and said, “Oh this had made my day!”

I was glad to have her holding that space for me, the space of radical gratitude. It’s hard for me to get there. It’s hard in 6 hours to hold your kid while they cry that they hate their life, to watch them wake from a chemical sleep, to wait in the purgatory of knowing there is one nucleated cell, only to find out it was nothing and then celebrate.

Thankfully, she reminded me that it’d take time to move in to that place and that was ok.

I walked inside to lay down and give myself some intentional space to soak in the results. Clear spinal fluid. A gift.

Jude told me he wasn’t feeling too well, and we decided that perhaps a bath would help him. I mindlessly added a couple drops of essential oils that I knew were helpful for an upset stomach. Within minutes he was complaining that his whole body was itchy like it had a rash, and I realized I had added a “hot” oil. A “hot oil” being basically an oil that has components that irritates skin and mucus membranes and should never be applied topically. We quickly drained the tube and I rubbed him down with soap and rinsed him with the shower head. He wanted to try the bath again so we re-filled the tub, but because of all the water already used, we lost hot water about 3/4 through the refill. He begged for more hot water and so we brain stormed that we could heat a huge pot on the stove and add it to the tepid bath. In the meantime I handed him a towel which he laid a top himself to keep the room air off his wet body that was only half covered with tepid water.

Josh went to boil water on the stove and I stayed with Jude. He was anxious to be left alone. I wasn’t sure why. But hospital days always have emotions come out in unexpected ways so I didn’t think a whole lot of it. Within minutes Josh yelled that he was headed up with more water and as if on queue Jude proceeded to throw-up, a huge amount, all over his bath. He started sobbing, between heaves. I rubbed his back as he sat in the bath, adding to the slurry of tepid water and his own vomit. He finished, turned to me and smiled, “I feel MUCH better…and I am so glad I was in the bath!”

To each their own.

I yelled down to Josh, “Abort mission! May Day! May Day!” and laughed at myself that I was able to just find the humor in this insane situation. Josh came quickly and we worked to get the bath tub drained and Jude rinsed and then soaped and rinsed again, though this time with fully cold water as the water tank was empty.

We got everything squared away and I got snuggled in to bed with Jude who would go on to be sick multiple more times that evening.

I didn’t have any time to sit with the bigger meaning of clear spinal fluid, we were anchored securely into getting through the stomach flu.

Head right on over to Part 2 of this story here.

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