Last week Beaudin had his t-cell apheresis completed locally at our hospital in Denver.
Beau had his cell collected. He rocked it. He said the PowerWand line placement was a 2 on the 1-10 pain scale. Which says a lot about how damn brave he is, and also a lot about how lucky we are that our facility uses PowerWands which are a relatively new medical device. The day was long and slow as it was in January and just the same, I felt quite busy with nothing to actually do.
Hospital Time is a weird phenomena. There is very little to accomplish on paper, but there is never a moment to sit down. For six hours I adjusted the incline of Beau’s arm so the machine would pull properly, handed Beau drinks and snacks, confirmed with the nurses paperwork after paperwork after “oops, forgot to have you sign this one” paperwork, helped Beau to the bathroom, went to the bathroom myself, arranged Beau’s pillow, handed Beau his iPad, adjusted the position of the heating packs wrapping Beaudin’s arms, consulted with the Apheresis doctor about if we really had to leave the lines in overnight, rationed through the explanation to Beau, and more. You get it. At the end of the day I laughed when I looked in my hospital bag and saw my laptop and a book, both untouched. I had run in place for 6 hours straight.
Beau’s body allowed the collection of a load of healthy cells, twice as many as in January, and 5x as many as was needed. Because we started the collection later in the day, Beau had to keep the lines in over night and when he had them pulled the next morning, usually the hardest part, he barely flinched. Actually, he didn’t flinch. He said the pain was a zero. He is so damn brave. Fact.
During the visit, I met with the hospital’s lead bone marrow transplant (BMT) doctor. She is the one who leads the apheresis collection (from the cancer side of things, there is a separate Hematology doctor who is also directing traffic) and so though Beau is not currently under her care, per say, she is the lead of his case. She was very kind and enjoyable to speak with, had a lovely bed side manner- direct, witty. And frankly, left me completely leveled about if we were moving in the right direction.
It turns out that there are different “camps” when it comes to how to approach relapse, and though they all play for the same team, there are significant differences of belief. I’d compare it to a gathering of different denominations. ….An Evangelical, a Lutheran, and a Presbyterian walk in to a bar…. Do they all believe in God? Yes, sure. Do they all believe in the same God? Yes, sure. But despite this core tenant, how they express their faith, what they believe about their faith, how they approach people outside their denomination, is vastly different. Are they fighting each other over their particular stance, no (or at least not currently in history.) However, if you pull the Lutheran aside and ask, “Surely, you can just be Presbyterian, right?” the answer is a firm and loyal “no.”
…So, a CarT doctor, a bone marrow transplant doctor, and a standard chemo doctor walk in to a bar….
The part about walking into said bar was that I hadn’t at all been expecting it. The bone marrow doctor arrived somewhat unannounced to introduce herself and within a couple moments I was in the hallway of the apheresis lab probing into the dark, scary space of transplant survival rates and she was casually telling me she didn’t agree with the CarT route for Beaudin’s case.
Cancer is weird because in some ways you are never not thinking about it. “It” being everything. But in other ways, you block out so securely certain thoughts that when they arrive unannounced you are side swiped.
What exactly does “single digit treatment induced mortality” mean… to us?
For a lot of Leukemia parents, bone marrow transplant is a scary, “hope we never get there” idea. There are a slew of truly terrible side-effects and a lot of statistics that don’t bend in survivals favor. But it is also a damn effective route to long-term survival. One trouble is that many patients do no go in to transplant until they have exhausted many, many other options. That’s a fancy way of saying that after years and years of chemo that wrecks their bodies, they finally arrive at transplant and offer their weak and battered little bodies to a hugely aggressive and hard treatment. So among a slew of things that we discussed with the transplant doctor, alongside casual things like a 90% likelihood of infertility and, was does approaching a bone marrow transplant earlier, allow a healthier patient a better chance at long-term survival.
Talking about your child’s life with the phrases “long-term survival” and his death with “treatment induced mortality.” will never not floor me. I nod in agreement and write down the answers to my questions, but inside my ego is screaming with all it’s will.
THIS CANNOT BE FUCKING REALLLLLLLLLLL.
Most unfortunately, this is, in fact, quite real. Last night, Josh and I were out, at an event, among other people. I know, picture it. It was wild. We were chatting with a woman and Josh said, “Sometimes I still feel shocked when I think “Beaudin has cancer.” Two and half years in and it is still hard to get the deepest parts of us up to speed.
Anyway, back to… well where was I going with all this anyway? Ego? A bar? PowerWands? I’m not sure. The conversation with the bone marrow doctor was disheveling, apheresis went really well, and I left desiring an actual drink in a bar with no doctors nor members of the faith. I think that’s where I was going with this.
This is the part where I want to just list off data, but it’s so intwined in my soul with experience that it takes me forever to write a single word. Literally this post has been open on my laptop for going on a week and I still can’t make out what needs to be published.
Originally we were meant to be in Philly June 22nd for Month 3 tests. The tests are a bone marrow biopsy and lumber puncture that ensure cancer is not growing. Then we found out Beau’s t-cells fell off, so we planned to go earlier, this week- June 18th bc if the cells fell off, we needed to ensure the cancer wasn’t back in full force. I spent approximately 4,398 hours pushing forward rushed insurance paperwork and approvals, arranging childcare, booking flights, confirming hotels. After a lot of heavy lifting, it all came together. Then 48 hours out, Beau got a mild cough. Because the trip would include sedation, even a mild cough is a no-go, so everything got delayed. Pushed, not to the original date of June 22nd, but to the following week. (turns out the O.R. is quite busy with many patients pushing for things like mild coughs because when you distance for 12 months and then re-enter society, cold season is delayed.
This led to many emails among our team wondering if we had that kind of time. At this point, Beaudin has been without surveillance- that is to say- anything to stop cancer from growing- since April. The hope is that he is still in remission from the CarT because although the cells fell off, they usually ensure a couple weeks/months of remission, but how would we know? We’d know by getting his Month 3 tests done, which were meant to be done the 22nd, then the 18th, and now, God-willing, the 28th.
The plan is to move forward with HuCarT in Philly this fall, despite the conversation in the bar with the bone marrow doctor. (….was it a bar? Pretty sure it was…..) The t-cells we collected last week cannot be transferred to CHOP for manufacturing until we sign the consent paperwork for the HuCarT study, which we are planning to sign when we (finally) get to Philly for the Month 3 tests. From there, cell manufacture is 6-8 weeks. That’s another 6-8 weeks where we have to decide how to kick the can down the road in Beau’s treatment. Do we administer maintenance chemo to keep any rouge cells at bay? (Every dose we give him now is a dose we can’t give him later because of the lifetime limits of chemotherapies.) Do we wait and watch, given there is no measurable active disease in his body, and risk cancer coming back stronger because it is without surveillance?
No one knows, and every doctor in the bar has a different answer. I’ll let you know what we decide.
9 thoughts on “Three doctors walk into a bar: second T-cell collection”
So unbelievable. It leaves me speechless. Bone marrow transplant, infertility, Beau doing all of this, he has to go through all of the punctures and treatments, it’s still very surreal to me how strong and brave he is and that this is the only way. Love you
Prayers are the same for everyone “at the bar”!! Much love.
This cannot be real. I echo your feelings, every night we pray for this to not be and it still is. I’m so sorry this is still happening and want so badly for him and you to be ok. Love you Bets.
Thanks Sav ❤ It still is. thanks for still being here. love you.
Holy Kamoly Bets. All of this… the longevity of the suffering you’ve all been through, the contradicting expert opinions and the decisions on the table, the REALNESS of it all. No one asks for this and yet the GRACE with which you step forward (Grace includes telling WHAT THE FUCK?!?) always amazes me. You’ve got a massive reality on your plate and you continue to get up everyday and move it forward. Lucky Beau to have you as his mama. I hope I can continue to cheer you on. Please know I’m watching you over there. Always sending love.
Always love seeing you here D. And always feel fed by your encouragement. Always feeling your love. xxxxx
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Oh my gosh Betsy. The thought of all of these decisions you have to make overwhelms me. I feel paralyzed trying to order at a restaurant with all 3 kids. I can’t imagine making these huge decisions, when there are so many options and so many opinions. You are doing a phenomenal job.
[…] of the treatment. Generally. Except when they don’t. Like that one doctor, that one time, during t-cell collection, in the bar, you recall. She said that the more disease, the more reaction, the more reaction, the better because it give […]
[…] Our team put forth the standard relapse chemo regimen which is a modified version of the initial treatment: heavy hitting up front, followed by 2 years of follow-up chemotherapy as well as cranial radiation. That success rate hovers around 70%. I found another option online-CAR T-cell therapy and even better, a trial at the Children’s Hospital of Philadelphia for CAR T-cell therapy in CSF-only relapses. Our team said it was worth a shot. Less toxicity, and far less treatment. Relapse therapy is far less straightforward than initial diagnosis, with the path forward much less clear. […]