I love seasonal jammies, though I only own one pair. It is in owning and wearing seasonal jammies that you start to heal from pediatric cancer, I am sure of it.
I almost couldn’t wear them this year because every time Selah saw me in them she would melt into a Halloween inspired puddle because she didn’t have any Halloween jammies.
I should have just bought her some, but I am a bit late to the game this year, being that the holiday is 10 days away, and I am far too practical to buy something for 10 days of wear that she will outgrow by next year.
However, fear not, I have set a reminder in my phone for November 1 to go scan the stores for clearance Halloween Jammies, but a size up, *bam* ready for Halloween 2022. Look at me planning ahead.
Month Two After HuCAR-T
Anywho, what’s knew with me? Well, on Monday, I spent two hours price checking our 20 most often purchased grocery items on InstaCart. What items should go on which list- Costco, Natural Grocers, King Soopers, Whole Foods.
You see, Beau had clinic this week and I was pretty anxious, see the aforementioned use of time. Why not see if I can save approximately $1.87 on produce to avoid considering that it may be the last normal day we see for a while. We’d check at clinic for b-cell aplasia, the lack of b-cells would indicate his t-cells were still working.
A dark room, and a bat
I told a friend the other day that the only way I can describe how we are living right now feels like this:
You get diagnosed with cancer and you get tossed into a dark, pitch black room. Slowly, you start to see a tiny light at the far side of the room, and you learn you just have to make it to that light to get out. So you start to walk. Through treatment, through relationship changes, through reconsidering everything you thought to be true, through side effects, you just walk towards the light. And along the way you start to feel a bit better. You adjust to the dark, your eyes grow somewhat accustomed. But you also start seeing other kids die. Because all the other people in this dark room, walking to the light, are cancer families. And the trouble is that some don’t make it out. So you walk, or crawl your way forward and find normalcy in the pain of being among these fellow sojourners. For 2.5 years we made that crawl towards the tiny bit of light. And then, last year, on November 11th, relapse came up from behind us, with a metal bat, and took us out at the knees.
Out of no where. No sign, no indication, no genetic explanation. Shocked us, shocked our team.
We were told to carry on in the room. That it was the same black room, and there was the same light at the end, it just wasn’t as clear when (and now if) we would get to it. No one explicitly changes the when to if, but the room changes shape. It goes from 4 walls and a straight path forward, to an infinite space.
So we did it. I kept crawling towards the light. I mean, really, because what else does one do? But now we knew that there was someone in the room with a bat.
CarT came and went and, as you’ll recall, on Day28 we found out that the cells hadn’t held. Another blow.
Summer came and went. Life felt normal, but HuCarT was on the horizon. Then Emily relapsed and that damn light of simple, straightforward survival felt dimmed. Can we handle dim, yes? Do you want as much light as possible when you are in a room with someone with a bat? Also, yes.
We crawled through Philadelphia, through HuCarT, through Beau’s reaction, and on Day28 heard the treasured news that the T-cells were still working! Amazing. A sweet sip of fresh air.
Just a sip though. You don’t ever really exhale when you are in a dark room and you know someone is walking around with a bat.
This month, “Month 2” felt like big results to me. I mean, every month feels like big results. Every result feels like a big result. Every damn day that the metal bat doesn’t hit you is a relief. But Month 2, this mattered.
I mean on Day 28, sure no b-cells, but what if they returned on Day 29, or Day 30. What if we had just barely missed them. But Month 2, month 2 would put us at 57 days out. This would buy us some actual time. This would show us that his body wasn’t just across the board rejecting t-cell therapy.
–
Driving to clinic yesterday I ran through all the possible reactions I could offer when we found out bad news:
frustration. annoyance. defeat. sorrow. complacency.
I didn’t ponder how I would react if the results were in our favor.
It’s not that I was expecting the results to be bad. But I guess, well, the only way I can describe it is to say, “If you knew that you were going to walk into a dark room and one of two things would happen. One, someone is going to take a metal bat to your knees. Or two, they won’t.” Which situation would you prepare for?
–
I am done praying for good results. If you want to continue doing so, by all means. But I am done. I have prayed for 3 years for different results. I have watched thousands pray for different results. I have watched Lorin pray for different results.
I have not resigned that praying is worthless, but I have completely upended my thoughts on what the point of prayer is when it comes to direct asks. So, yeah, I didn’t pray for good results. I prayed that I would know what to do if the bat came.
–
B-Cell Aplasia Results
Anti-CD20 Evalution
CD19 Percent (Rituximab)
<.01%
CD20 Percent
<0.1%
–
No b-cells present. The t-cells are still working!
No bat.
–
I texted Lorin. Lorin who’s Emily was in the middle of a procedure. Lorin who’s Emily wanted these results a couple months ago.
“No B-cells. We live to see another day.”
“Amazing!! Go live your life! Enjoy it!”
I have never felt a more encouraging charge.
Go live your life. Enjoy it. Direct orders from a mama who knows that despite still being in the black room, when the bat misses you, you celebrate.
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