Jason was now at the world renowned epilepsy center at the Montreal Neurological Institute (MNI). Jason’s neurosurgeon and neurologist were leaders in their field. I was so relieved that Jason was there. Jason liked his MNI medical team and they quickly grew very fond of him. The team in a short time got how Jason and I worked. At first they directed the questions to Jason but only to hear “You will have to ask my Mum. My Mum knows.” So soon enough the team would meet with me to discuss Jason’s case. Jason knew that I would go to the edge for him and get him the best and this took a lot of pressure and worry off him which became evident to the doctors. Of course Jason always had the final say but at least I could do all the groundwork for him. I recall in one particular meeting a couple of doctors who were brought onto the team assumed that I was a neuroscience nurse from the way I was briefing them and discussing Jason’s medical case to date. They were surprised to discover that I was a MUM and a horse stable owner!!!!  I would come to the meetings armed with my detailed notes, copies of all MRIs, CT scans and pathology reports. It must have looked  funny seeing me standing with them, the only one not in a white coat, looking at the images on the screen. I knew Jason’s brain images so well. They said I helped them tremendously as they took copies of my notes. It was a great relationship and Jason would grin when he saw me standing with the team and always became very relaxed knowing Mum was at the helm.

Meanwhile I had to find somewhere to sleep. I stayed at a hotel down the hill from the hospital for the first few nights but at $100 per night for a month I couldn’t stay there. A nurse at the MNI told me about a nunnery within walking distance that sometimes has a small number of basic rooms w/shared bathroom for relatives of the ill. With Jason now asleep and the nunnery business card in hand I set off to find it. I followed the little map on the back of the card. There rising from behind high stone walls was a group of imposing grey stone buildings with a spiral poking up through the middle of them. I wasn’t sure about this. I pushed on a heavy old wooden arched door somehow expecting it to be locked but to my surprise it creaked open. The buildings were cold and gray, sober in appearance with many windows which immediately made me wonder about the nuns on the other side of those windows, what an austere life it must be. There was not a soul to be seen but I felt like I was being watched.  A sign that said visitors with an arrow pointed to a small plain door. It was locked. I pressed the buzzer. An unpleasant loud crackling noise followed by an elderly woman’s voice “Allo?” met my ears . I introduced myself and my situation. There was no verbal response just a loud long buzzing noise and a pronounced click. I was in. No sound just my footsteps echoing on the highly polished floor as I bravely walked down the massive corridor, still not a soul to be seen. At the end was an elevator that mysteriously opened right ahead of me. I go to Main. It was eerily quiet. Everything was so grand and elegant in religious detail.  I spotted a  room with the door open. I walked in. A frail woman hunched over is barely visible from behind the solid dark oak desk. I said “Hello” carefully not to startle her. She raised her head revealing a delightful glowing face framed with large glasses complete with a mass of shocking white hair. She gave me a lovely smile and a nod  “Allo!!”,  this was the buzzer voice! Communicating with her was difficult due to language barriers but somehow we managed and I had a room.$25 per night including breakfast!!! Plus they would pray for Jason each day!

When I got back to Jason with the news he couldn’t believe his Mum was going to be sleeping at the nunnery and having breakfast with the nuns. Jason got a lot of mileage out of this and loved telling the staff which was fun for him. This kept him amused and interested each day with my tales from the nunnery. Jason would tell me “Mum you better not try to sneak any wine in” so we had lots of fun with it which was great.

Jason was visually monitored round the clock. Jason’s scalp was covered in 25+ electrodes recording intracranial activity. Jason had to lie in bed under this observation 24 hours a day for just over 3 weeks. Jason could only leave his bed when accompanied to use the bathroom or shower. The days were very long. I arrived at 8.30am-8.30pm. This daily living was a true testament of Jason’s patience and determination. Other patients weren’t doing so well with being confined like this and would be angry and frustrated. Jason would just stay quiet, focused and positive. Jason’s medications were gradually decreased to nothing in order to see the full effects of the seizure. This was a very stressful time. It took many of us to ensure Jason’s safety. The seizures increased in number and were very explosive and extremely physical. Once enough data was gathered Jason was gradually put back on his medication. This was very tough on Jason’s system…nausea, dizziness, headaches….. Heartbreaking but I just kept reassuring him that it would get better soon as I held the sick bowl. I always had to stay strong and positive with a slight humorous lightness so Jason would not be alarmed. As long as I held this persona Jason knew everything would be ok. I could not show any sign of worry as Jason would pick that up immediately.

The team now knew where the seizure focal point was. The seizures were coming from scar tissue from a previous surgery. They expressed that the seizures were about as bad as they can get and no doubt were hard to manage. They finally understood what the family was trying to cope with. They felt epilepsy surgery would definitely help Jason but they had never had a case like Jason’s where there were existing tumours. The left acoustic neuroma causing brain stem compression was making them nervous. There was no previous data to go on. There was the added risk that while in surgery the brain pressure could change and the brainstem could shift up or down resulting in a brainstem stroke.

To not do the surgery also had risks. The unpredictability of seizure onset and lack of seizure control was a constant major threat to Jason i.e. walking into traffic. The intensity of his seizures added a very real risk of cardiac arrest due to the brainstem shifting from pressure change in a seizure so life threatening risks were everywhere. We all knew that no matter what Jason was on a mission for the surgery. Jason felt safe with the team. After speaking with Jason the neurosurgeon agreed to do the surgery. The surgery approach would be to go in quietly and slowly, sneak around the tumours, do the epilepsy surgery by removing the scar tissue and then get back out quietly and slowly, all without waking up the sleeping tiger! I had complete faith and  trust in them to make the right decisions while holding my son’s brain in their hands.

Surgery was scheduled; we were to return in 6 days. Meanwhile we could go home and see the rest of the family 2 and 4-legged!