When your child is diagnosed with acute lymphoblastic leukemia you hear that it’s the “good” cancer in that it’s EFS (event free survival) is upwards of 94%. And that helps you find some footing in the sinking sand because in what world could you fall in to that 6% of kids. You already got the short stick, right?
Then your child relapses, like that seemingly small 6%.
Then you learn that of those 6% of kids that relapse, only a single digit percentage, something around 4%, relapse as “CSF-only (Cerebrospinalpinal fluid)”. And you start doing the math (and by doing the math I mean I am calling my brother and being like “do this math for me….”) and come to find that that’s, you know, .25% or a mere one quarter of one percent!!
Beaudin relapsed in a way that shows up in 1/4 of a percent of the patients. Which feels like a tiny number. And also irrelevant in size because it’s our life, so what difference does it make as a statistic?
If at diagnosis the doctors had said that there is one quarter of a percent chance that Beau will relapse this way I would have laughed and been like, “yeah, ok, not loosing sleep over that.”
In December when we met with our team to discuss next steps, that time where no one said it, but everyone knew it was relapse, the team agreed that trying to get in to the CHOP study was a fine way forward. The success rates of Car T were around 60-70%, and the success rates of the other option (2 years of chemotherapy and radiation) were around the same.
6 in one, half dozen in the other.
Moreover, Car T was less toxic, shorter in duration, and allowed Beau to not have radiation which would help him if he relapsed again and needed to move to bone marrow transplant. When you have a transplant, you have to have full body radiation, and there are life time limits to that before it kills you, so if you’ve already used up some on relapse therapy, you have less to use on transplant- rendering your transplant potentially less successful.
And that’s relapse for you. Making decisions about treatment based on what may happen after the next relapse. A new space in heartache is carved out as you are no longer seeking “the best treatment”, but instead weighing the cost benefit of what will keep the most options on the table for the next relapse.
We chose Car T, as you know by now.
The first day of treatment we checked-in, Beau was accessed, and the doctor came in to chat quickly before starting the chemotherapy that would clear out his marrow for the Car T infusion.
“So, we just wanted to let you know about some mid-trial data that has recently come to the surface. It appears, based on the data, that the kids in this trial are keeping their t-cells less than 50% of the time.”
“How much less than 50%?”
“Well, it’s hard to say since many kids are still within the first 6 months, but likely around 40%”
I stared at her and ran quickly through the scenario of grabbing Beaudin and fleeing. Car T had been an obvious choice for us, but also an impossible one. It is new science and has unknown ramifications on things like life-time autoimmunity, fertility and more. It is the right choice and also unimaginable. Because sure, a genetically modified chance at survival is better than 2 years of tocix chemotherapy and dangerous cranial radiation, but barely. But we were told success rates were similar, 60-70% either path.
But now I was being told, 10 minutes before the point of no return, that the success rates were not in fact equal. This trial was not what we thought it was.
Not what we thought it was when choosing to move to Philly for 6-weeks, not what we thought it was when deciding to leave our other kids at home for 6-weeks, not what we thought is was when we decided to be married across the country for 6-weeks, not what we thought it was when agreeing to the fine print unknowns.
Life it seems is never what we think it is. Did this change matter?
“Ok…. So…. is there consideration to stop the trial?”
“No, not at this point. The treatment is still a very low-toxin approach, and a good option for children so it’s not like we are in an unethical space. However, I just want you to be aware of this data, I’d want to be aware of it if this we my son.”
Well, right, but what I would really like is to have been made aware of this prior to 10 minutes before we start. Or really, what I’d really like is to just not be here at all.
I looked at her for a couple moments, my furrowed brow causing her to shift in her seat as though preparing for all I was about to say. I ran through all the thoughts in my head, wondering if any of them should be voiced.
“Ok….. well… I guess that’s good to know,” I said after a pause that made both of us uncomfortable.
“Ok, the nurse will take you back now.”
I mean what difference does it make. We’d still choose this. We’d still be here. We’d still have taken Beau from his school, from his siblings, from little league. We’d still have divided up our family. We’d still have agreed to the toddler crying over FaceTime. We’d still have understood the fall out of Jude’s behavior. We’d still have signed-up for the fine print. Even if the numbers were 40% and not 60-70%. We’d have given this a chance.
It’s all just numbers right.
Statistics, data, footing.
Last week our team from Denver emailed to check-in on us. I read the email and my heart ached to be with them. It’s so weird, caring more for your child’s cancer doctors than you care for most other people in your life. Reading their words like a balm for my soul. I replied with an update and let them know about the mid-trial data update and how it felt kind of defeating.
Our attending, someone who shoots straight and has little time for the fluffy edges replied quickly:
Thanks so much for sharing. I do think it is so hard to hear other stories and not see your own child in that. However, there are also kids who this has worked for, the first time, so important to also have that parked somewhere deep inside. You all are amazing and making great decisions for Beau. We are looking forward to seeing you all again! You are missed!
So deep inside I’ve been trying to carve out some space for that. For the small statistics. For the truth that this could work for Beau. After all, Beau ended up in a situation that left us in the 1/4 of a percent group. And now we have a 40% chance of this working, of this being the thing that ends it all.
40%. Perhaps those are good odds after all.