In 2020 we became a “medical family”.
Here are the events as they unfolded. Mostly unembellished by the emotional storm we were tossing around in for just over a year as our girl started to show signs that something was seriously, terrifyingly wrong.
In 2019, in her eleventh year, our sweet Vera started having random episodes of vomiting.
No nausea, just “Mom, I threw up”.
And it kept happening.
I knew in my gut something was wrong, she had never been a pukey kid.
January 7th, 2020
In the car on the way home from dance class, Vera said, “Mom, it’s weird, my teeth hurt”. Ok, I thought, probably growing some molars, we are due for a visit to the dentist.
An hour later we are at home, I’m making lunch and plans to take her and her friend to the pool. She’s curled up on the sofa wrapped in a blanket. “Mom, it’s weird, I can’t remember things.”
“What do you mean honey? What can’t you remember?”
“Well I can’t remember math things.”
Ok, I thought, some math anxiety.
“Like, I know that’s a paper, she said pointing to the paper on the coffee table, “but I don’t know what that is,” she said, pointing at the pencil.
I asked her more questions. She got increasingly flustered. I called Kelly upstairs.
I’m not proud of this, but in the moment, I was so incredulous that she was having trouble speaking, that I blurted, “come on honey, if you are putting this on PLEASE stop, you’re freaking me out!”
But by then she could only say, “I’m fine… I’m fine… I’m fine…”
Kelly knelt in front of her and he said, “honey, can you tell me who I am?”
“I can’t see your face.”
We called the ambulance.
We thought she was having a stroke.
In the ambulance bay at the Stollery emergency, the EMT flashed a light in her eyes and they rolled up and to the right. Oh my god.
Kelly was catching up by car.
Not long after, while a resident was looking her over, her eyes rolled again and she started twitching.
“What was that?!!”
“Oh, just a bit of ticking,” he said.
“Really? Nothing? Because it looked pretty scary to me”
That night they ran every test, bloodwork, CT scan, spinal tap, toxicology. Nothing came up.
For over 6 hours she couldn’t tell Kelly and I who we were.
This was mere weeks before Covid 19 really landed here in Canada. The hospital wasn’t looking for it yet. But her flu swab did come up positive the next day. Influenza B.
Pretty dramatic flu onset. We were sent home with Tamiflu and a diagnosis of a confusional migraine.
The vomiting continued. In regular intervals, once a month, she would have a day or two where she would begin puking in the afternoon and into the evening.
The vomiting was particularly intense. Projectile all over the bathroom. I ran out to get some Gatorade.
The third time that afternoon, I had her sit in front of the toilet and was braiding her hair out of her way when her eyes and head turned all the way to the right and she fell on the floor in a full seizure.
She was postictal when the ambulance arrived. That, we learned, was what they called the recovery period after a seizure. Very, very tired and confused. They say having a seizure is like running a full marathon in just a few minutes.
This time, when we got to the hospital, she went into another seizure and a whole group of staff and doctors saw it.
No, it was not just a confusional migraine. It was not just a tic. It was terrifying, and I was sobbing outside the room.
I knew really nothing about seizures, but I felt pretty sure she was never going to be the same.
We spent 4 days in the hospital.
Epilepsy. Like for always? Probably.
The MRI showed a tiny irregular spot in her left temporal lobe, a smudge, almost imperceptible. “A very good brain”, they said, “just this one small concerning spot. Let’s take a look at it again in a couple months to see if there is any change.”
Waiting for Seizures
They say that Epilepsy is really a disorder of anxiety. Seizures are not happening all the time. And when they are not, life is pretty normal. It’s a disorder where you don’t have the problem all the time.
What you do have all the time is FEAR.
You live in constant worry about the next seizure. Because you don’t know when they will happen, and they are horrible.
The rest of the summer in 2020 was drab and long for most because of Covid restrictions, but for us it was an eternity of anxiety.
A month after the diagnosis, on schedule, a vomiting episode. Sickening dread. We took her to the emerg.
Kelly, being the calm one, stayed with her while I went home to freak out. Covid restrictions meant that only one parent was allowed at the hospital. This was one of the cruellest measures of the pandemic for us.
This time, the vomiting did not turn into a full blown seizure, but it took its toll on our nerves.
In September, the second MRI looked much the same as the first in July.
Well good then, maybe just a bit of an abnormality that can be managed with meds.
It’s probably a DNET tumor, they suggested, a common cause of Epilepsy. It can be managed with anti seizure meds, or surgically removed if not.
OK, we thought, this might be manageable.
The Surgeon’s Doubt
The neurosurgeon was still uneasy and wanted another MRI in December.
Ok, best to be sure.
Just before Christmas she called and told us that this MRI showed “subtle enhancements” in the tumor.
She would like to remove it to be on the safe side.
Right after Christmas, January 6th.
Oh wow. Brain surgery?