Chapter 2 – First Surgeries

There was very little talking on our way home to Waterloo. My Mom and I were both exhausted, Cailyn was shell-shocked, and Lauryn was her sweet,
accommodating self… throwing us smiles that would temporarily drag us back to what “normal” could look like. It was an extremely long
day, consistent with the majority of our hospital visits to follow.

…

I have to admit that the day of Cailyn’s first surgery is a bit of a blur. There are a few key things, however, that I remember.

One, how traumatic it was to sign my name to the bottom of a consent form that only spelled out the risks associated with the intended brain
surgery. There was no black-and-white documentation of the possible positive outcomes.

Two, I was very well supported by family and friends.

Three, there were 3 objectives: get a biopsy to confirm tumour-type; drain the cyst; and, insert an ommaya reservoir (a mechanism that would
enable non-surgical drainage of the cyst so surgery wouldn’t be required every time the cyst “filled up”).

Four, the procedure took over 10 hours. We were definitely trying to focus our thoughts on the positive outcomes we wanted but the potential
risks were very hard to ignore. [Cailyn’s tumour is located in the pons-medulla area of her brain-stem… an area where, I learned, 10
of the 12 cranial nerves are located or pass through.] These types of experiences make you appreciate the quote: “ignorance is bliss”.

Five, an unfortunate event happened, resulting in a serious scare for all of us. The “Team” (the supporting group of family and friends) and
I were sitting in the waiting area of the Pediatric Critical Care Unit (PCCU). Two women came walking out of the PCCU and I heard the name
Hovey mentioned. We all over-heard one of the women say to the other, “do you want to talk to the family, or shall I?” Holy smokes – this
is one of the last things you want to hear! My heart was in my throat as she approached me and I don’t believe I physically took a breath
until they confirmed that Cailyn was okay. As it turned out, the two women were Social Workers and they were working out which one was
going to take our case. Whew!!!

Six, in my meeting with our neuro-surgeon, she shared that she felt the surgery had gone relatively well. She had been unable to insert an
ommaya reservoir but she believed that she and the other neuro-surgeon working with her had been successful getting a biopsy and draining
the cyst.

Seven, it was wonderful to know that my daughter had safely made it through surgery but it was extremely difficult to see her in the state
she was in, as a result of the surgery. She couldn’t breathe on her own and was horrified by the tube that was down her throat. She was
crying and trying to tell me something but I felt helpless to understand, which only made both of us more upset. I can’t recall how many
attempts were made to remove the breathing tube the first few hours after surgery but each attempt failed… watching her struggle with
respiratory therapy while her oxygen saturation levels were dropping was traumatizing for all of us. The end of the evening saw my exhausted
sweetie with a breathing tube. She was so unhappy but at least her body was receiving the amount of oxygen it required.

Eight, one of the things that I had hoped to see was a straightening of her right eye after the surgery – considering that there should be
less pressure on the nerves working the muscles of her eyes as a result of the cyst being drained. Immediately post-surgery, her right
eye did appear a little straighter. However, it was just wishful thinking on my part.

We were in the PCCU for a few days – we were able to leave once Cailyn could breathe on her own and her other critical health stats had stabilized.
We were then transferred to the “floor” where we were followed very closely.

As the hours passed, Cailyn’s neurological assessments were showing an on-going decrease in her strengths. After receiving the results back
from pathology and MRI imaging, we learned that none of the objectives from her first surgery had been achieved. In addition to the ommaya
reservoir not being inserted, the cyst had not been drained (any appreciable amount), and the biopsy was “inconclusive”.

I was distressed. My daughter’s well-being was crumbling before our eyes. Another surgery was urgently necessary…