Michele White said she will never forget the face of the doctor in the emergency room at Ridge Meadows Hospital who told her there was nothing wrong with her son.
He was later diagnosed with cancer.
Twice the mother of three boys saw her adult son Trevor taken by ambulance to the local emergency room, where, she claimed doctors dismissed excruciating pain as anxiety, and in his head.
The 29-year-old had severe symptoms. He could barely walk, couldn't sit, had double vision, was hallucinating, had difficulty urinating, and periodically couldn't speak.
Michele told doctors Trevor had surgery for a brain tumour less than a year earlier.
After a decision to bypass the local hospital in favour of New Westminster's Royal Columbian, doctors there diagnosed the 29-year-old with leptomeningeal disease 鈥� a condition where cancer spreads to the brain lining and spinal fluid.
The ordeal began in April when Trevor 鈥� who was living a healthy, active lifestyle on his own in Burnaby at the time, suddenly noticed a strange pain in his leg.
First it limited his ability to sleep, then he was unable to sit in a chair. The pain travelled up to his tailbone, where it seemed to settle in.
He went to his family doctor before going to emergency in Burnaby, where they performed a CT Scan and X-ray but couldn't find anything. He was sent home with nerve blockers and pain killers.
As the pain became worse, a decision was made that he would move into his parents home until they could figure out what was happening.
By May 11, the pain was becoming more invasive and he was not getting any sleep.
His family knew something was very wrong. On May 19 they phoned for an ambulance to take him to the hospital. However, Michele claims, the paramedics said they see pain like Trevor's all the time, and he just needed to push through it.
So, that day they signed a waiver saying he didn't require a lift to the hospital and booked a physio appointment instead.
But the pain got worse.
On May 21, Trevor had what he described as a full-body spasm emanating from his back and spine. He remembers screaming in pain, and when the pain subsided, he found he couldn't speak.
This time they took an ambulance to the ER.
Michele said the doctor immediately noted that Trevor stopped moaning in pain when they entered the room, and said after looking at the results of the Burnaby tests, there was nothing they could do for Trevor. They did another CT scan and found nothing, sending Trevor home with pain killers.
Trevor suffered hallucinations and became bed-ridden.
On May 27 they called for an ambulance and saw a different doctor in the ER.
Again, Michele and her son Zac told the doctor Trevor had been a healthy, young adult before the pain started, and they begged the doctor for an MRI.
This time, Michele claims, the doctor said, "I've been a doctor for 40 years, and I'm telling you there is nothing wrong with your son, he's just seeing things."
"Some people just can't deal with the pain," the doctor said, and walked away, said Michele.
At this point, Trevor started thinking he was probably having severe anxiety attacks.
"It's easy for people to downplay their own symptoms, because they don't want to assume that something is so, is so wrong with them," he said.
Michele feels the doctors made Trevor believe the pain was his fault, even though they knew about his brain tumour.
"They knew about it. I made sure they were aware of it and it's on his file that he had cancer not even a year ago," said Michelle.
The turning point came when another of Michele's sons described the symptoms to his physiotherapist, and that health professional told him the symptoms were potentially a sign of spinal metastasis 鈥� the spread of cancer to the spine from a primary tumour in another part of the body.
The family armed themselves with the proper medical terminology, and went to Royal Columbian asking for an MRI.
They said the difference in treatment was remarkable.
Doctors there ordered multiple tests, and Trevor received an MRI within 24 hours. He was immediately admitted, and the next morning a neurologist came to see him.
"He essentially told me what's going on is not in your head. Something is happening to you," said Trevor. "The level of care at RCH was very different in the sense that they weren't finding answers, but they kept looking."
Trevor was admitted on May 30 and diagnosed mid-June. He had two brain surgeries, and new medication.
Since his diagnosis he has been able to return home and has regained most of his mobility and strength. He still has double vision that he is working through, but was able to regain bladder and bowel control.
But he has a struggle ahead.
Leptomeningeal disease is an incurable disease. Even with the therapy Trevor is on now, doctors have estimated his survival at six months.
The White family has complained to Fraser Health's Patient Care Quality Office, and have been told the office would be following up with the units and doctors at the hospital.
Trevor wants to fight.
His family says he has a great oncologist team, but they are limited in what they can do.
The family have set up a GoFundMe page to help send Trevor for clinical trials in the United States, where an initial assessment will cost them $35,000 US. So far $75,020 has been raised.
Michelle and her family are thankful they decided to bypass Ridge Meadows Hospital, saying they could no longer trust the emergency room doctors there.
"There was not willingness to want to investigate," she said of the doctors.
Dr. Laura Kelly, the medical director at Ridge Meadows Hospital, said the site has a team of professionals who care about their patients, and do their best for them.
"I would have to say, our hospital provides excellent care for a community hospital," she said.
Kelly was limited by confidentiality laws from discussing a specific patient's experience, but said in general terms, the care team conducts an assessment that takes in the patient's history, and a decision about whether they can be safely discharged is made in collaboration with the patient and their family.
"Each individual visit is taken on its own merit, taking into account what has gone before," she said.
Kelly said she feels badly if this patient had a negative experience at the hospital. When this happens, patients can access the patient care quality office, and give their consent for a robust investigation.
Trevor is thankful he has his family who are strong advocates for him.
"I don't know if I would be here in the same shape that I am without my family and my brothers, really like, taking very detailed note of my symptoms and my pain," he said.
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