Chapter 1 – Diagnosis

Charles Dickens had it right in “A Tale of Two Cities”… “It was the best of times, it was the worst of times…”.  It was July 2004 and I was celebrating – celebrating both the delivery of a baby girl in June and the purchase of a new home.  My two girls and I were at my parents’ house.  Two-year old Cailyn was watching one of her favourite TreeHouse shows as she ate her afternoon snack, and my Mom and I were enjoying a visit while 7 week-old Lauryn slept.  I noticed that Cailyn’s attention had moved to the outdoors.  I asked her to tell me what was so interesting outside that it was drawing her attention away from a “favourite show”!  She answered “my show”.  I asked her why, then, wasn’t she looking at the TV.  She stated “I am”!  Well, as it turns out, she was… but she was doing it by turning her head to the side and looking out of the corners of her eyes.        

Within the next week, two more neurological signs appeared, prompting our family doctor to send us over to our local hospital to see an on-call
doctor.  As an introduction to how emotional medical experiences can be, this situation served perfectly.  Cailyn received an IV
– something she still fears to this day – with the intention of giving her “contrast” during the scan.  Contrast can make certain tissues,
abnormalities or diseases more clearly visible.  Unfortunately, she wasn’t one of the children who respond well to the sedative used…
she just wouldn’t settle.  Three doses later, rather than having a sleeping child in my arms, I had a thoroughly agitated girl who was
trying to dive headfirst off her bed.  The window of opportunity for completing the scan was closing, so I had to physically hold
her head in the machine as she was screaming and thrashing about. 

I personally had had 2 MRIs and I understood the importance of a patient lying very still for the images to be clear enough to make a diagnosis. 
Movements of any significance can make the images useless.  Although I was applying all the pressure I felt I could, I knew I hadn’t been
able to hold her head perfectly still.  There was so much movement, actually, that the doctor and technician decided not to bother using
the contrast for additional clarity. 

Some time after the scan was completed, the doctor approached us and told me that he had seen nothing of concern in the scanned images.  I
sincerely wanted to believe him… who wouldn’t… however, I was very concerned that the images wouldn’t have been clear enough to rule anything
out.  Although I shared my concern, it was not well-received.  Dismissing me, he turned to the nurse to discuss my daughter’s discharge. 

It was an extremely difficult moment for me… I felt powerless to get the doctor to consider any further tests that could confirm that
things were going to be okay.  It was both frightening and humbling… I was afraid that we didn’t have enough information to truly
understand what was going on with my daughter, AND, I was unsuccessful at getting my perspective heard.  If I had been in a boardroom
and I felt my perspective was important enough to consider, I wouldn’t have allowed myself to be dismissed.  Here, in the hospital environment,
afraid for my daughter’s health, I held my tongue and passively accepted the diagnosis, one I desperately wish had been accurate.  I accepted
in that moment that my concerns and observations were not valued as something important to consider.  We were sent home numerous hours
later, after Cailyn had come down from her drug high, with a follow-up appointment 4 weeks later. 

Cailyn’s first symptoms were a turned-in right eye and an asymmetrical smile.  I had read about “strabismus” (crossed eyes) on-line after
our family doctor had mentioned the term.  Not knowing how critical the timeline was for considering the treatments noted on-line (patching
and/or glasses), I e-mailed my cousin who is an eye surgeon in London, Ontario.  I wanted his advice about whether or not I should do
something in the interim between our hospital experience and our follow-up visit.  He e-mailed back and suggested that I take Cailyn
to an eye doctor immediately.  I was able to get an appointment the next day.

My cousin called me the next evening to get more information about her symptoms.  He had been out running and all of the details I had
provided in my e-mail to him kept running through his mind.  I told him that we had been able to see an eye doctor and he listened carefully
as I recalled the doctor’s observations.  He felt that Cailyn was dealing with something neurological that should be further investigated. 
He told me that he was going to arrange a consultation with a paediatric neurologist at London Children’s Hospital.  Immediately, I felt
a wave of anxiety.  He was suggesting that I go “over the head” of the on-call paediatrician.  What was I going to tell the paediatrician? 
Would he think I didn’t respect him?  I was very concerned that it would compromise the quality of our relationship.  [This is a
very real concern of many family members supporting a loved one on a health-care journey:  we are afraid of angering a health-care provider that we’re relying on to care for our loved one.]  

My cousin reminded me that the quality of my relationship with this once-seen doctor wasn’t something I should be concerned about now.  My
daughter’s well-being was the only thing I should be considering.  I can still remember the physical shiver that ran through my body as
I realized that this journey required me to take on a new role – one that I didn’t want:  Cailyn’s advocate.  I would have to put
the needs of my daughter before my own comfort level.  I somehow sensed that I was going to experience a great deal of discomfort in this
new world of advocacy, and my body was trying to “shake off” the realization.  

My cousin organized an appointment with a pediatric neurologist in London and I got the call from this neurologist’s office the next morning. 
My Mom and I quickly packed up the girls and headed down the 401 to meet him.  He did a comprehensive neuro-assessment and recommended
an MRI for the next day.  On our way home, my Mother and I commented to each other that we felt we were in good hands.  He was straight-forward
and no-nonsense but listened openly, hearing our concerns and observations.  He made no preparations to leave until we appeared satisfied
that we had “aired” everything. 

We all drove back to London the next day for Cailyn’s MRI.  Again, Cailyn had some real difficulty settling, although they’d used a different
sedative.  (I wonder how much of my nervous energy was transferring to her!)  I really felt the pressure for her to fall asleep…
I was painfully aware that there was a limited window of time within which she could have an MRI – if she took too long to settle they would
have to move on to the next person.  I “frantically” rocked her (how helpful was that) – I don’t know how many times I repeated “PLEASE
fall asleep”.  Eventually, after what seemed like hours, Cailyn settled and the scan was completed.

There were a few signs that we weren’t going to get the results we wanted…