“Yo, stand my ground, dig in with both feet
No surrender, no turning no cheek, no retreat”
– “No Retreat,” Pharcyde (2000)
The last couple nights, I got alone time.
First with Beckett on Tuesday night, then with Brody tonight.
I told Heidi when she came home from a night with friends: I love that our children are our best friends.
On Tuesday, Beckett and I shot the shit while I cooked in the kitchen.
It was inappropriate and crude.
On Wednesday, I sat with Brody at a going away party for a friend in a bar.
She tried to convince me I loved her more than Beckett.
Father of the year for talking poop and penises with Beck; for dragging Brody to a bar?
But I’ll take it.
I’ve got dialogue. Legit, loving dialogue with a teenager and a pre-teen.
Can’t ask for nothing more than that.
* * *
I’ve been stupid petrified by the media coverage of the outbreak of acute flacid myletis. It’s a lot like Beckett’s Guillain-Barre, but with a wicked twist.
Kids are getting paralyzed, but they don’t seem to be getting better.
Some of this, I can’t help but think, is based on what these kids’ health insurance offers. Beckett has always had access to crème de la crème healthcare.
His saving grace has always been intravenous immoglobulin, otherwise known as IVIG. This “drug” – really a derivative of thousands of blood donors’ plasma/white blood cells – is limited in availability, hard to come by, and extremely expensive.
A single dose – line item – can cost $20,000. But the time of the medical staff, the supplementary drugs that must be administered for the human body to accept it and the “rent” for the time in the hospital bed you must stay in to get the transfusion, can easily push the cost to $35,000 or more. Per dose.
Beckett has had seven in his life – two of them in a highly concentrated form that can push the costs, when all factors are combined, into the $60,000 range, at the highest end.
Negotiated insurance costs drive these numbers way down, but the point is: saving a life isn’t cheap.
The favored alternative for insurance companies with AFM is steroid treatment – pills that cost a buck a pop that reduce neural inflammation, but appear to do little to heal many of these neurological disorders.
To be fair, the National Institutes of Health and the Centers for Disease Control aren’t convinced that IVIG can fix this outbreak of AFM we’re hearing about in the news; but nor do steroids appear to do much beyond slowing progress and masking symptoms.
There are who doctors argue in the wake of more data, children should at least be getting the drug that gives them the better chance of healing.
But that’s not the way supply-and-demand, insurance companies and high-cost drugs work.
I’m guessing most parents saddled with the frightening onset of the unknown don’t know where to turn, where to find resources, who to ask, how to fight their insurance company, how to deal with doctors who don’t know about rare diseases, how to do anything but sit-back-and-pray that their doctor and hospital in Middle-Sized-City, USA can fix this thing.
Problem is: in some cases it’s a largely futile prayer. There ARE doctors who specialize in rare neurological disorders. But you have to fight to find them, get time with them. You may have to travel to see them. You have to learn – so, so much. You have to be an advocate for your loved one.
You have to question everything. You have to become the expert.
If we didn’t do that, I don’t think Beckett would be the child he is today. Strong. Playing sports. Being a normal boy.
A lot of the tenacity we had was due to Heidi’s family. Her mom and step-dad were both medical executives.
They broke down the “myth of the doctor.”
In the hospital, in January 2017, when Beckett fought his second bought with Guillain-Barre, in arguably one of the best children’s neurological hospitals in the United States, his doctors wanted to send him home. Despite the fact that he was paralyzed from the neck down, despite the fact that he couldn’t move, despite the fact that a mere bed sheet grazing his toe would send him into intense pain.
This is the dark side of the modern medical system – when all the CAT scans, and blood tests and MRIs show nothing, you blame it on a “virus” and tell the patient: call us if it gets worse.
The day they told us we were going to be discharged, a couple of prominent neurologists, general MDs and interns stood in our room. I lit into them: about what we were witnessing, about what he was facing, about what we knew from our previous experience with GBS in 2011.
It was the single best public-speaking performance of my life.
Armed with my anger, they ordered one more test. Given only by one expert in the whole hospital.
And that test: a nerve-conductivity test – basically running electrical impulses through your body and seeing what happens – confirmed what we knew. Beck had GBS again.
Armed with that data, they prescribed IVIG. And three days – and two mega-doses later – he walked – WALKED – out of the hospital under his own power.
Had the disease been left to do its thing without the proper treatment? Let’s be blunt. Given two or four or six days to rip apart his nervous system some more … I don’t like the outcome. I think it’s safe to say: he wouldn’t have been recruited by the Diamondbacks high-school farm system a couple months ago.
* * *
But this is what we’re up against – all of us, young and old, parents of kids with rare disorders like this.
New CDC data shows the prevalence of conditions like Beckett’s may be up two- or three-fold since 2012. That still makes these conditions insanely rare – maybe 2 or 3 per 100,000 in any given metro area per year.
And that means that the flu, and broken arms and cancer are still what most doctors spend most of their time dealing with and thinking about.
But it doesn’t mean there isn’t hope; and it doesn’t mean – depending on the variant of immune system disorder you or your loved one has contracted – that there aren’t better therapies out there than the one you’re getting.
* * *
The crazy thing is: there are doctors doing ridiculously, amazing things that almost normalize some of these neurological conditions. That make it – in some circumstances – something that can be treated at home.
I want to emphasize: I’m speaking very generically here. This is not medical advice, just a personal story. AMF appears to be a very different condition than GBS. It presents differently, it causes, best I understand, spinal lesions, whereas GBS attacks the myelin sheath of the nerves. It’s the outcomes: the paralysis and the weakness that are similar.
That said, we are beyond blessed to have found a doctor who is world renowned for his expertise in immune system disorders that trigger self-destruction of the nervous system.
My first interaction with this doctor went like this.
Me: Blah, blah, blah, blah. Lots of medical facts and figures and Beckett’s history. And also this NIH study; and this CDC report and this interesting trial out of the Netherlands.
Doctor: Are you a doctor?
Doctor: A lawyer?
Doctor: Well, you sound like one. Okay, so fill me in on what happened in this last instance.
And then, as I talked, he responded like someone who had read (truth is: he wrote) most of the medical literature on Beck’s condition.
Then he offered a series of game plans as to how we would deal with any obstacle that came up. From in-office (in front of a movie screen) to at-home (at home!) administration of IVIG if Beckett ever needed it again.
We prayed for a doctor we could trust.
We found one who knew the disease inside and out.
We found an advocate.
It was the first phase to finding sleep again; naturally.
* * *
I recently connected a close friend to this same medical professional – one who also suffers from the same disease as Beckett.
She may – may – have the alternative, constant version: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Basically, lifelong GBS.
She’s been dealing with the side-effects (Beck has them, too, but not as severe – and not all of these symptoms). Too much exhaustion, tingling at the extremities, more weakness than is normal, returning paralysis.
Recently, she received the first of several doses of IVIG in a safe, non-hospital setting and has made massive progress.
* * *
But, I digress.
I’m not entirely sure what I set out to convey tonight.
Mostly a story of positivity, I suppose.
Sitting among friends, wishing my buddy goodwill as he planned his move to Chicago, Brody by my side, I was mostly at peace.
You can’t imagine how rare, how fleeting that is.
Not at 42. Not after all we’ve been through.
* * *
This morning, as I settled down to code some major changes to SRP’s website, I got a call from another friend.
“I was going to text you,” he said. “But it would’ve come out weird.”
“Have you ever considered Beckett’s health insurance when he’s an adult?” the friend asked.
I laughed, a friendly, knowing laugh.
“Uh huh,” I responded. “All the time.”
* * *
What started this whole train of thought was something I posted on Facebook last night.
The video of a distant connection and his sister on the Today show, talking about her own battle with GBS.
The media loves a good miracle recovery story. Crazy disease happens. Doctors figure it out. Patient gets better.
But, ultimately, the media (or family) attention fades away.
And then the patient and the family are left with the real healing.
The healing from the fear, the healing from the residuals – that very special place where all the literature stops.
Anyone with a few years of experience in the aftermath of real trauma can tell you all about this.
Seven-, and two-, years out, I’m comfortable with all that.
Comfortable enough, anyway, to know that its real. That it doesn’t go away. That you try to move ahead – normal as possible – with your day to day life.
You may be reading this because you’re on day 5; or maybe on year 5.
Know this – if this is your story – you’re on a different journey now. Nothing will be the same. But things will still be beautiful.
You will talk with your son or your daughter; your brother or your sister; your husband or wife; your mother or father.
In the kitchen. In a bar. Bedside at the hospital. It doesn’t matter, really.
You will know and feel love.
And you should know there is hope.
For you; and for the one you love.