All I want to do is publish this damn post. And every other damn post I’ve been (mentally) composing for weeks now. But each time I open my laptop- I write a bit and link a bit, and search around the site to link some more and inevitably find myself reading a post from who knows when and then I’m crying.
Mostly it’s the hot tears that say something like, “fuck, I can’t believe what we’ve endured.” Because I am so tired, but also so fucking proud of us. Sometimes when Joshua is critical of where we are, whether it be parenting or marriage’ing or what have you, I am tempted to print out every blog post since December 2018 and sprinkle them at his feet as I scream, “WE SURVIVED THE PITS OF HELL! Anything else is a miracle!” and dance in a silly, insane way that makes him realize that we have fallen short, but we’ve made it.
Last year a post I wrote went viral. Since then it has been seen by 32,000 people. That feels insane, especially since I wrote it before relapse. Back when the worst thing that happened was cancer with a 94% survival rate.
Anyway, I am just trying to write about Beau’s recent labs. Which look great. It all looks great. Everything is great.
Except when I am dancing and crying and trying to make sure Joshua knows that we made it.
I just got a call from the school. Jude fell off the play structure. His hip hurts, his head hurts, there is no obvious sign of concussion, but he wants to come home. I’ll go get him, even though he is fine. Because sometimes you just want to be gotten, right? Even when you are fine.
He fell off the structure three times last week. His shoes have lost their traction from wear and his mind moves 1,000,000 times faster than his body. Or is it his body moving faster than his mind? I am not sure, but they aren’t often synced. I love him more than feels right, knowing exactly how it feels for your body and your mind not to be moving in unison. I am going to pick him up for reasons just as much about me as they are about him, that’s for sure.
I can’t wait to ask about the fall, hear about the details, let him show me the exact location. I can’t wait to help him to the van and toss him my phone and tell him to be the DJ for the drive home. I can’t wait to walk-in and tell the nurse, “I am here for Jude.”
He is fine. He doesn’t need to come home. But he doesn’t have a lot of practice being the one who gets to come home early. The one who gets to be worried over. Then one who gets to here, “I am here for Jude.” So today, that’s what I will give to him.
Perfect labs. Beau’s labs.
Just like the labs the day he relapsed. Before they reviewed his spinal fluid. Back when “his labs look great,” was all we needed. So yes, I’ll tell you about how his labs look great and it’ll link to something sad.
Someday the labs won’t trigger panic. Won’t they?
Did you know that even great labs cause Joshua and I to comb the internet to ensure that a low, flagged BUN/ Creatinine level is likely just dehydration. And that low hemoglobin, well it’s actually his normal, but that automated low red flag never remembers that.
The trouble is that almost any lab marker you google can be explained by a host of things, but the top two are almost always: dehydration or Leukemia. Try it, it’s ridiculous.
Cool. Cool. Cool.
But his marrow is strong, his platelets are above 250, his white blood cells are 7, (7!), an ANC of 3850, for goodness sake.
His labs look great.
…But he has .01% immature granulocytes and, sure, any value under 10% is normal, but everything starts normal, doesn’t it? And sure, immature granulocytes can be from a compromised marrow like the cold he has been battling since forever, but it can also be from a compromised marrow that is riddled with cancer. So does 1/10 of a concerning value feel worth being concerned over?
Of course, of course!
Of course not.
The other day a friend posted on Facebook, “Be so positive that people must unfollow you because they can’t hang in such hope.”
That will never be a problem for you all. Clearly.
I unfollowed her immediately because that’s toxic positivity and will kill you.
So Joshua texts me and I text Lindsy and I consult google and within 15 minutes we all decide Beau likely just needs to drink more water.
And it’s ‘generally’, like he ‘generally’ needs to drink more water, but Joshua texts me back, “OK, I will have him chug a huge glass when we get to grandma’s.”
Beau’s labs looks great, and he needs to drink more water. That’s all I have to report.
Except we also have to decide if we want to check his spinal fluid. His team at CHOP says we don’t need to do that. We can just wait and just watch, just stay hyper vigilant for signs of relapse.
“You’ll know,” they say.
His team in Denver, the team we love and know and trust and feel like family, they suggest a simple LP.
“What’s the harm? He does so well. We could just take a look and see.”
But an LP is not simple. It’s a procedure. It’s a sample from an internal, closed system. There is risk of infection. And discomfort. TO BE CLEAR, just because Beau doesn’t cry doesn’t mean it doesn’t hurt. Can he hold it together to lay in the fetal position while a 4″ needle is placed between his vertebrae into his spinal column? Yep, he can. Does that mean he should, for us to take a look and see?
Not only that, but seeing means knowing and knowing means that perfect labs may actually mean nothing. So, Joshua and I haven’t discussed it, in a way that feel both like optimal mental health and also supreme PTSD dysfunction. It’s Christmas after all, and denial can be a state of mind just as much as it’s an island.
What is the point of knowing before Christmas? Maybe so that we can celebrate this Christmas as we did the Christmas of 2020, following relapse, where every adult in the room had the unspoken panic that this was the last one.
Our team suggested the exploratory LP happen in “December or January,” so we will just wait until the New Year.
It’s only a suggestion.
Besides, his labs are perfect.