5 years. 5 years have gone by. 5 long, often hard, sometimes sad, completely life-changing years.
I can hardly believe it.
5 years ago today (July 29th, when I started typing this), we heard those words, words that seemed to suck the air out of the room, words that when you hear them, you have absolutely no idea what to do with them.
“He has a mass… in his brain…”
The rest will forever remain somewhat of a blur. There was something about needing to head down to Children’s Hospital in Minneapolis, something about calls have been made and they’re expecting you, something about not passing Go, and not collecting $200…
We took some minutes to figure out some quick babysitting for the 7 youngest children, and made that hour long drive for the first of what would be dozens of times over the next few years. I remember the drive, the uncomfortable, palpable, silence. I remember thinking, “We’re actually doing this. This is actually happening. This isn’t a movie. This is my life, playing out in real time, right now. We’re actually driving down to the Oncology Clinic at Children’s because our oldest son actually has a brain tumor…”
A few days earlier, I thought he probably had a pinched nerve in the neck or something…
A few hours earlier, I thought maybe he had MS…
The day before, when they had asked me for permission to start an IV for contrast during the MRI of his brain, “to get a better picture of what’s going on in there…” somehow a tumor hadn’t really occurred to me.
Cancer hadn’t yet entered my mind.
And the next thing I knew, we met the neurosurgeon.
We are all forever changed.
Not the same.
Our little Faith is 5 years old (she was 4 months old when Ian was diagnosed), and has no recollection of life before cancer. She doesn’t remember her oldest brother being able to run and jump like a teenage boy should be able to do. She doesn’t remember his singing voice. She has no memory of his beautiful violin playing. She doesn’t remember Ian walking with a steady gait or being able to write legibly. She doesn’t remember a time when he didn’t frequently drop things because he struggles with both gross and fine motor skills, still.
Daniel (3 1/2 yrs) & Joy (just about 18 months) will never know a life unaffected by their big brother getting cancer.
They’ll probably never know a September without being acutely aware of Childhood Cancer.
They’ll probably never know a May without being acutely aware of Brain Tumors, and the havoc they wreak.
At least not while I’m around…
Sometimes it seems surreal how not normal our lives actually are…
Our children are used to hospital visits.
Our children are used to long therapy appointments.
They’re used to long days with a babysitter while mom takes Ian for all day appointments for follow-up scans, shunt revisions, lab work, and visits with his oncologist, neurologist, psychologist, physical therapist, occupational therapist, speech therapist, audiologist, and whoever else I’m forgetting…
It’s all just a part of regular life for us.
I’m used to it too.
When it became obvious that little Daniel was significantly speech-delayed, it seemed natural to me to have him evaluated down at Children’s in Minneapolis, despite there being clinics closer to home. I knew the therapy clinic at Children’s. Half of the speech and occupational therapists there had worked with Ian.
I drove that hour for weekly speech and OT appointments for another child, 2 years after Ian had stopped weekly therapies, because I was familiar with it. I trusted them. I knew the best therapists around work there.
For me, there is a strange comfort at Minneapolis Children’s. Still.
It was our second home for well over a year…
It’s not normal to feel at home at a Children’s Hospital.
Except that it is.
It’s our normal.
So how is Ian doing 5 years later?
Oh, that is such a hard question for me. Like, my heart breaks a little each time somebody asks me and I have process the thoughts again.
There is just no easy answer.
The short and simple answer is, great! NED! (For the uninitiated, that stands for “No Evidence of Disease”.) Stable. “No new neoplasms.”
The long answer is much more complicated. And more than a little bit heartbreaking.
His speech has come a long way, but it doesn’t take long after meeting Ian to realize that something is different. He has a mostly flat tone when talking. He still has trouble controlling the volume of his voice (and every time I say that, I giggle a little bit inside remembering that scene in Austen Powers…) He has to really work at his breath support, to get the words out, and because he has to actually work at it so hard (something the rest of us take almost completely for granted), he often ends up much louder than intended.
He has trouble keeping up with conversation because his processing speed is slowed and it’s work for him to not only form the thought/response, but it’s work, real work, for him to get the response to his mouth and off his lips. A laid back conversation is usually ok, but if the discussion starts to get a little bit intense or heated, like, say, a political or philosophical debate (sometimes I can’t help myself), he will usually check out with a frustrated huff, because he simply can’t keep up.
I can’t even begin to imagine how frustrating that must be for him. I mean, I’m a talker, a fast talker, like Gilmore-Girls-speed talker. To not be able to engage in a lively debate at breakneck speed is something I just cannot wrap my brain around, despite seeing it played out before my eyes on a regular basis…
His gross motor skills have come a LONG way. He walks independently, though, again, it doesn’t take long after meeting him to notice that something is different. He sways when he walks, leaning to and fro, often reaching out to steady himself by touching a wall or piece of furniture. He still occasionally falls. Through all of the lingering balance issues, he has continued on in tae kwon do, which has been the best physical therapy money can buy, and he just recently passed his brown belt test!!
Getting his brown belt is an AWESOME achievement, and yet, my heart aches when I think about how they have passed him through the last few belts despite him not really being able to accomplish all of the moves with correct form. The instructors have many times commented on how far he’s come, how determined he is, how hard he works. They want to keep him motivated, trying new things, so while he does spend longer at each belt than most people do, he is being advanced in sort of an “honorary brown belt” sort of way. Again, he has come a LONG way, an amazing long way when I think about it, but we both know that he can’t properly execute a tornado kick. And there’s a good chance that he never will. And that breaks my heart.
His fine motor skills have improved, but he still struggles, a lot. His writing is barely legible, and I mean barely. Typing on a computer keyboard is a frustrating challenge for him as his fingers just do not do what he wants them to do. Tapping out text on his iPad or phone is a rather slow and laborious task fraught with mistakes.
He often complains about his hands, both about the lack of control and the lingering pain from the neuropathic pain. He’s told us that it basically feels like being poked & pierced with wood splinters, or broken glass, when his fingers touch something. The neuropathy set in just a couple months into his cancer journey, after a few doses of what is considered a pretty mild chemotherapy drug. Can you imagine nearly 5 years of feeling like everything you touch is poking you? I can’t either…
The neuropathy is still pretty bad in his feet as well. He tries to never go barefoot, as when he does, every time his foot touches something he recoils in pain. It’s better for him to have something always touching the bottom of his feet (shoes & socks), which acts as sort of a dulling buffer for his sensitive nerve endings.
He still struggles with double vision, after a failed attempt at correcting it surgically.
Cognitively, his memory has seemed to improve a little bit, as the chemo brain fog slowly lifted, though I’m pretty sure it will never again be what it once was.
Slower processing, declining memory, dropping IQ points… I was told by docs early on that radiating the brain basically speeds up the aging process. After watching him for several years now, I’d say that’s a pretty spot-on way to describe what’s happening up there.
The next few paragraphs are very hard to write.
The last thing I want to do is humiliate my son, but I do want to give a little insight into some of the other hard ways that Ian’s tumor and resulting brain injury have affected our lives…
Ian has had a few episodes of unclear, at times even delusional thinking, something I’ve never mentioned publicly, and even only rarely mention privately. He has made some very poor judgement calls (more than the usual young adult mistakes), and has shown himself to be easily preyed upon.
For instance, he has asked to borrow money, or to use my check card, to invest in some get rich quick scheme he saw online, more times than I can count. We’ve had many talks about it, and he still comes to me every couple months to show me an email that he got, that he is certain “looks legit”, and is upset every time I refuse to give him money despite my showing him how obvious it is that the link provided is not “legit”. He thinks I’m holding him back from finding a way to support himself (he has been unable to find a job that he can do…)
He has also been taken in by some not-so-great people on who have connected with him on social media, and we have had to follow the advice of his psychologist to limit and closely monitor his online activity. There were some very concerning interactions.
Ian has also, more than once, made “plans” to take off, across the country, by himself, with no money, to do things like “open a gym in Texas…” Now, I’m all for young people with big goals and dreams, but this is not the same. He had no money, no contacts there, and no plan for what to do when he stepped off the bus. When his plan was discovered, and I was questioning him about it, he told me he would probably sleep under a bridge until he found a place, you know, because it doesn’t get cold down there. (?!?!!!) He doesn’t remember this conversation today…
It has been recommended to us (by both a hospital social worker and his neuropsychologist) to pursue legal guardianship, and that he should not live on his own.
He is considered a vulnerable adult at this point.
I don’t think I can adequately describe the weight of that on our mom and dad hearts, so I’ll just leave it with asking for continued prayers, for the long haul.
I do want to add that the types of cognitive and mental struggles Ian has wrestled with are not necessarily common to childhood cancer survivors. Most, if not all, childhood cancer survivors will struggle with after effects of their treatment, but many will go on to live productive and very near-to-normal lives, praise the Lord! I am truly happy for those kids who really conquer the beast, but that happiness is shadowed by the knowledge that brain tumor survivors often face more struggles than their peers who have survived other cancers. But even so, many childhood brain tumor survivors will go on to live relatively normal and independent lives. And then there are the small handful of survivors who struggle on a much deeper and much more challenging level. Unfortunately, despite the leaps and bounds of progress he’s made, Ian still falls into this group…
Ian does have other after lasting effects of his treatments, like lingering frequent nausea, hormone levels out-of-whack, and more than an average amount of back pain which we can probably thank full spine radiation for.
I’m sure I’m forgetting some things, and I know I’m leaving out a few things that we’re just not comfortable sharing.
Just know that there is so much more than you know, so much more than anyone can see.
And that’s where we are 5 years later…