REGINA – One family’s experience with glioblastoma – the most aggressive type of primary brain tumour in adults – is prompting them to speak out if it can help others who may find themselves in a similar situation.
Rob Allison, who lives in Regina and has a cabin at Kenosee Lake, met the woman who would become his wife, Lisa, while teaching English in South Taiwan.
“She was a very intelligent and humble person [who was] not materialistic,” said Rob. “She cared for everybody. Everyone loved and respected her. She never wanted to be in the spotlight. She was a smart but quiet person. She was an incredible wife, mom, and friend.”
They were together for 20 years.
The Allisons knew something was wrong with Lisa three days before being diagnosed with glioblastoma.
Rob had taken Lisa to urgent care in Regina. They were told it was a sinus infection, so they got medication, but Lisa continued to feel disoriented, confused and nauseous.
“It came on quick,” said Rob. “That morning, she seemed normal, just tired, that's when I took her to the ER at the general [Regina General Hospital].”
Just after midnight on Jan. 29, Rob was called back to the hospital; he had gone home to be with their son Jayden.
The hospital had performed a CT scan on Lisa.
“They realized she was full of brain cancer,” said Rob.
The largest tumor was 2 1/2 by 4 1/2 centimetres.
“There were several lesions that spread throughout the brain, which were causing the brain to move,” said Rob. “It was 12 mm from the centre of her brain. That’s how much it had swollen. That’s what was pushing on the skull and giving her headaches.”
Later, on Jan. 29, Lisa was moved to neurology at the Regina General Hospital. The following day –which happens to be Rob’s birthday – Lisa was formally diagnosed with terminal glioblastoma, a type of cancer that starts as a growth of cells in the brain or spinal cord.
“It’s the worst invasive brain cancer you can get,” said Rob.
This changed the Allison family’s lives forever.
“It was the worst nightmare; it was deeply painful to witness and watch," said Rob.
Lisa immediately took action.
“Lisa was very optimistic. She made videos for my family members. She made cards for the nursing staff,” said Rob. “She made videos for Jayden to watch in the future on his graduation [and] wedding day. She planned. She was very organized. She never complained even knowing her life was going to be short.”
Upon diagnosis, the surgeons estimated that without treatment, Lisa had one to three months to live, but with treatment, she had six to nine months.
“The reality was that the disease was growing faster than the treatment. Lisa wanted to fight to be with me and our son. She wanted to fight by doing chemo and radiation, but halfway through, I believe the treatments didn't work,” said Rob.
During this time, Lisa also went blind, deaf, and was losing weight.
“The most horrific day out of all of them was when she lost her hearing.”
Rob took Lisa back to the ER at the Pasqua Hospital at this point.
“Lisa was confused. The tumors were pressing on certain nerves. It was affecting many different areas,” said Rob.
“She suffered severely. My son and I have had many conversations throughout this tragedy. We are traumatized for life. Our lives will never be the same. The worst part of it was that here was somebody that was young, beautiful vibrant.”
From the time of diagnosis to Lisa’s death was 84 days.
Rob provided home care and Jayden helped as he could for five weeks.
“The worst part is that we slowly watched her die. Every day got a little worse. There was always something,” said Rob.
"We watched her slowly fade away. I have no words to explain the pain of that."
The Allison family could have never known this is the turn their lives would take when they were in Florida at Christmas.
“It was a great vacation,” said Rob. “We had a lot of fun, [there were] no symptoms. Everything was normal.”
It was only three weeks after they came home that the Allisons knew something was wrong.
“She was fighting for her life three weeks after we got home,” said Rob.
Although it was an awful experience, Rob and Jayden are grateful to everyone at the hospital who took care of Lisa.
“The palliative unit is another world,” said Rob. “When you open those doors, it’s a different feeling. The care, love, empathy, (and) support (was) amazing. They were welcoming people who made my wife very comfortable in the end.”
Rob and Jayden are working on trying to navigate life as they now know it.
“We are trying to understand how this happened,” said Rob. “Our lives were flipped upside down overnight. We are trying to honour her by doing the things she loved.”
This includes activities like being at the lake, travelling, camping and watching Winnipeg Jets hockey games.
“We don’t know what the future looks like at this point, but we have no choice but to move on,” said Rob. “We will never forget her. She will always be my wife, my first and last love.”
At 14, Jayden now must navigate the rest of his life without his mother.
“Losing his mom at a young age has taken a toll on his mental health as well,” said Rob.
They hope to use their experience to help anyone who may go through something similar in the future.
“People have heard the term brain cancer, but before this, I had never heard the word glioblastoma,” said Rob. “If people feel some of the symptoms that I mentioned, get immediate help.”
“I want to make people aware (of glioblastoma). If we can help one person to make an experience like this a little better, that's what we want to do. We want to bring light to this nightmare we went through."
Although Rob acknowledges the immense pressure those who work in the health-care field are under, he also urges those reading to always advocate for themselves.
“I want people to know if you are not feeling good with a headache, dizziness or confusion, push for a CT or MRI and don't take no for an answer,” said Rob.
“We pushed; I advocated for my wife for hours for them to do a CT which they didn’t want to do. I'm assuming because it costs money. CTs are expensive but in a situation like hers, no is not an option. You have to push. Had we gotten things done faster, yes, it was terminal cancer, but we would have been on top of it sooner.”
