You can read Part 1 of this update: Here.
The benefit of a visit to Philadelphia without any procedures was that we got to have an in-person conversation with the CAR team. We are at a fork in the road, and it felt relieving to make a plan to move forward with us all in the same room. Mostly because we don’t entirely agree on where to go from here, and not agreeing on life or death things for you child is hard enough, muchless not agreeing over the phone, half a country away.
The details of that:
Without 6 months of consecutive CAR persistence, the current data suggests that more treatment is needed. The current data does not parse out how to understand a patient like Beau who has been NED (no evidence of disease) for 13 months, nor a patient whose history is one, CNS- only, relapse. How do CAR T-cells operate inside of spinal fluid, as opposed to bone marrow? It’s anyones guess.
And when I talk about “the current data”, well, do you know how many kids have had CNS-only, first relapse and done CAR T?…A handful. We are making decisions based on the statistical analysis of a handful of kids. There are a couple hundred who have done CAR T, that data is more significant, but for Beau, for his relapse, it’s small.
None of this makes sense.
So while the CAR doctor, tells me that the protocol is to move forward with a bone marrow transplant, I suggest that that is the protocol because almost all of the previous CAR T patients are on their 2nd or 3rd relapse. They have already exhausted the other options. CAR T was their last shot. She concedes that that is correct. She also explains that because they haven’t ‘waited and watched’ on many kids, they can’t really say what the outcomes are with that approach. I know every kid they have waited and watched with, she speaks of them as numbers, but I know them by name. Thank you Facebook CAR T parent support group. She acts like there is no precedence, but I list the names and she nods.
We aren’t sure how a patient like Beau proceeds, what his body needs. She says we have to follow the disease, and I agree, so with NED what exactly do we follow?
She agrees that the ‘wait and watch’ approach is feasible, though not their protocol. I agree the approach is feasible and that there is no protocol.
“To be clear, I don’t want to ‘wait and watch,” my eyes start to get hot. “What I want is to know Beau is healed. If going to BMT is the only way to get him there, I would demand we start tomorrow. But we don’t know. We just don’t know. And given where he is at,” I break every contact across the bed and look at Beau. Healthy and well, immersed in a game of MarioKart. A single hot tear rolls down my cheek. “I don’t want to ‘wait and watch,” but I can’t sign him up for BMT. Not now.”
The nurse had been looking down for most of the conversation, but I could swear for a moment I saw her hold back the hot tears too. Maybe I imagined it.
The doctors affirms me, saying that she thinks we are making a sound choice based in logic. This is all I need. It’s not the choice they would make, I know that, but it’s also not there son.
“We have to allow for the thing we prayed would work (CAR T) to…. work…”
None of this makes sense.
With our new found freedom of canceled procedures and thus no sedation recovery we had 6 hours before our flight departed. We headed to the Franklin Institute to putz round. Beau found all his favorite exhibits that by now we know well, and I relayed the info to Joshua.
Eventually we found our way to the airport. As we uber’ed, I texted Lorin, Emily’s mom.
“Just checking-in. Our procedures were canceled. blah.”
The reply was unexpected. “Emily’s brain is bleeding and they aren’t sure why. They performed a surgery to mend it.”
Lord…this family… Cancer, relapse, CART, relapse, BMT, brain surgery. We check in with each other 2-3 times a week, and that’s all the time it takes to go from “She is good today, some mild arm pain, but overall good.” to “she is in emergency brain surgery.”
None of this makes sense.
We arrive at the airport and start in on the security line. I mindlessly scroll through new updates on Instagram and see an update on Knox. He is the boy that is 9 months ahead of Beau, with a very similar story, whose family is waiting and watching. They are a light at the end of our tunnel.
Knox had his 12 month procedures and they found no evidence of disease. A precious picture of him doing a push-up on the exam room floor. I saw the top line, “No Leukemia detected!!” I didn’t click to read through the entire caption. I closed my phone, shoved it in my purse.
Is there even enough survival luck to go around? It sure feels like slim pickings.
It was the first time I have seen his results and not been solely encouraged. I noticed and watched the feeling move through me.
“This isn’t how survival works.” I reminded myself, “We aren’t ‘drawing straws.” If he relapses we don’t suddenly get a coveted spot on survival island. No, Betsy, in fact, we then have no light at the end of the tunnel…”
I sit down at our gate and begin to take in the good news while still worrying that he is the one in a million, not Beau.
Survival math never helps anything.
I know this. I know this. I know this.
This is new science and the occupancy of the island is still being understood. We haven’t a clue. But what I do know is that if Knox remains healthy and whole, well, then there is actually an island to survive on.
Today, March 1, we are headed to Denver for our re-scheduled 6-month procedures. We are praying to see no evidence of disease in Beau’s CNS (central nervous system, spinal fluid) nor his bone marrow. We are hopeful that he is well, and also recall vividly that before his initial relapse he seemed healthy as a horse.
The waiting space is hard, and yet we hope.
Also, for those of you who have prayed for our dear Emily. The brain bleed ended up being a tumor, a cluster of leukemia that is referred to as a “lymphoma.” They were able to remove the tumor cleanly, but its presence was a real scare. Since then, they have done many tests and find her bone marrow transplant (BMT) to still be intact and fully successful, and there is be no other disease in her body- THANK GOD!!!! They think this little cluster of cells is left over from pre-transplant and is isolated. She will have targeted radiation to treat it. Please, please, please, as you pray for Beau, pray for Emily. Sweet girl has been through it all. BMT being hard enough and now two brain surgeries. Pray that she be healed and whole, and this extra radiation be all that she needs.