Chapter 3 – The Calm???
Having learned that Cailyn wouldn’t be alive in a year, if we didn’t begin some form of treatment, wasn’t the lowest moment of September 2004!
At our next follow-up with our neurosurgeon, the day of Cailyn’s 3rd Birthday, we learned that something had to be done quickly. Not
only was the cyst filling up again, but there appeared to be many little cysts developing inside the tumour… in essence blowing it up from
the inside. Our neurosurgeon felt that Cailyn’s best chance of survival required the removal of as much tumour as possible. To
this end, she had been actively soliciting the opinions of neurosurgeons from other institutions. With her help and a connection from
a dear friend, I reviewed Cailyn’s case with 5 other neurosurgeons. Included in this list were surgeons from CHEO (Children’s Hospital
of Eastern Ontario), Children’s Hospital Boston, NIH in Washington, Toronto Sick Kids and a surgeon who was involved in starting the Brain
Tumour Foundation of Canada.
The next few days didn’t get any easier. We attended the two last consults in person. I was very thankful my parents accompanied
me for the appointments, as it required us to be in the car for over 11 hours with a 3-year old and a 3-month old!
We arrived at the first hospital that Wednesday. It was a beautiful sunny day. As I opened the back of my SUV in the Hospital parking
lot, four (4) dragon flies flew into my car. I had heard that dragonflies brought good luck to those near whom they rested. I remember
feeling very hopeful that this would be the place where we got the help we needed.
The consulting doctor we saw was our London neurosurgeon’s mentor. He shared that he had been to the location of Cailyn’s tumour between
10 and 12 times throughout his career and was prepared to do the surgery. However, the success probabilities he quoted were extremely
frightening for me to consider. I told him how thankful I was that he was prepared to do what he could to save my daughter’s life. However,
I very respectfully asked if he knew of a surgeon who had been to that part of the brain more frequently and could, consequently, quote better
success probabilities. Without hesitation he told me about a surgeon in New York. I then asked this surgeon, who was prepared to
help us, an unfair question: “What would you do if she was your daughter?” He told me unequivocally that he would take her to New
York. Wow!!! Obviously my thoughts were running amok inside my head… what did I have to do to arrange it all? What about
our other highly-anticipated consult? What about OHIP? He told us that he would send our neurosurgeon the necessary information
to begin the process with OHIP and I would have to arrange for a transfer of her scans and her file to the New York surgeon’s office.
We then started our journey to our last consult. We didn’t know what to expect but we were very hopeful that our surgical solution could
be realized closer to home. My brother Michael joined us for the consult and we waited, holding our breath, while the neurosurgeon looked
at Cai’s MRI images. The interaction didn’t go as we had hoped, or planned. Regardless of the biopsy results, the neurosurgeon
felt that Cailyn’s tumour had a diffuse component to it. As a result, he did not think that surgery was a reasonable option. He
promised that he would take Cailyn’s images to his Tumour Board meeting that night and call me with the consensus of the gathered experts.
[A Tumour Board is a multidisciplinary group of health care providers who meet to review diagnostic information and discuss treatment
options for patients with brain tumours / cancer.]
We left the hospital feeling like we’d been punched in the stomach. If this surgeon’s opinion was right, we were dealing with a different
kind of tumour and the prognosis was worse. I was so hopeful that the other experts on the Tumour Board would have a different opinion.
We went to a restaurant and waited for “the call”.
Unfortunately, when the call finally came in, I didn’t get what I wanted……