Dying Winnipeg boy's cancer diagnosis came too late: family

The family of a Winnipeg teen with an aggressive form of cancer and only days to live says his illness should have been diagnosed sooner.

Doctors thought his pain was due to a sports injury, but on 4th hospital visit they discovered tumours

Erlen Ozkanli, 14, suffered at home for a month with symptoms related to his cancer before he was admitted to the HSC Children's Hospital on Dec. 21.

The family of a Winnipeg teen with an aggressive form of cancer and only days to live says his illness should have been diagnosed sooner.

Doctors say Erlen Ozkanli, 14, has a rare form of cancer that appears to be a combination of leukemia and lymphoma. 

It has spread throughout his body and isn't responding to chemotherapy or radiation, so Erlen is receiving palliative care— care focused on keeping him free from suffering— in the Children's Hospital at the Health Sciences Centre.

His family says it took several visits to the HSC Children's Emergency for him to get diagnosed— time he could have spent in treatment, they say, or at least treatment for his pain.
The family of a Winnipeg teen with an aggressive form of cancer and only days to live says his illness should have been diagnosed sooner. 1:56

"This whole thing is frustrating because it wasn't just like one nurse or doctor that failed him, it was a collection of people at the HSC who looked at his eyes and looked at his body and chose not to do anything about it," said his older sister, Ozten Paul, 21.

"He was screaming in pain for a whole month. They would just send him home each time. I just don't understand."

In November, the St. John's High School student hurt his right leg playing basketball. His father, Huseyin Ozkanli, took him to a walk-in clinic twice because the pain wasn't subsiding. 

Appeared to be sports injury

On Nov. 15, he took Erlen to the HSC Children's emergency department. He said he got an X-ray and a resident said it appeared he had a meniscal tear in his knee.

They returned for a clinic appointment on at the hospital on Nov. 22 to get a cast put on Erlen's leg. He was seen by another doctor on that visit, Huseyin says, who said he believed Erlen had some kind of sports injury.

"They put the boy down on the bed, they put the full leg cast on, they told us, 'Come back five weeks later,'" Ozkanli recalled, adding he wonders why more testing wasn't done then, given his son's pain and the unknowns of his injury.

Over the next few weeks, Erlen began to lose weight, often had a fever, and had an increasing amount of pain and swelling in his leg.

Ozkanli, who is Turkish and speaks English as a second language, said he called the clinic in December because he wanted to bring his son back in, but was told the clinic would close over the holidays, and that he could come back for the appointment on Dec. 27 to get the cast taken off.
Ozten Paul, 22, says her brother Erlen would have been spared a month of suffering if his cancer had been diagnosed sooner.

"I'm not [a] doctor," he said. "I don't know what else I can do."

He tried to keep Erlen comfortable by giving him muscle relaxants. He said he trusted the doctors and thought his son had a sports injury.

Since mid-November, Erlen was in too much pain to go to school or do any of the things he enjoyed doing like visit with friends. On Dec. 16, he reached a breaking point.

"The cast was growing tighter as time went on and he was losing weight and his eyes were getting really puffy so they took him back to the ER because he was in a lot of pain at that point," said Ozten Paul.

Return to HSC Children's Emergency

Her father said a doctor at the Children's Emergency looked at his leg and said the cast was too tight and they would split it to relieve the pressure. Erlen had been crying in the hallway because of the pain, he said, but the physician told Huseyin his son only needed Tylenol.

"'Look at his face, look at him,' I say. 'He's hurting!' [They're] telling me nothing wrong with him. They ignore me," said Ozkanli.

 

'He suffered for a whole month. And it wasn't just him suffering. We all had to watch him go through it."- Ozten Paul, older sister of Erlen Ozkanli

Erlen, who had always been a big, burly kid, had lost a lot of weight, he said. 

"His body was like a skeleton at that point, and he couldn't see at all, his eyes had shut completely," said Ozten Paul. "They told my dad his eyes were swollen because of all the crying."
Erlen Ozkanli, upper left, with his father Huseyin Ozkanli and siblings. Ozkanli means soldier in Turkish.

He was discharged home.

On Dec. 21, she says, her brother's eyes were swollen completely shut.

"He couldn't move. My dad was basically taking care of him. And he was just screaming in pain."

He was taken to the HSC emergency department for the fourth time by ambulance.

"That's when there was a doctor there that realized this wasn't just a broken leg and admitted him. The next day they broke the news to us that he had cancer," Paul said.

She said the physician told the family if Erlen had been left at home another two days, he would have died.

Admitted to Children's Hospital

After some tests — blood work, CT scan and MRI — medical staff discovered tumours in Erlen's knee and smaller ones in his neck, spine and near his brain. He was admitted to the Children's Hospital and began chemotherapy in late December, followed by radiation therapy.

Last week, doctors told the family there was nothing more they could do for Erlen except keep him comfortable, said Paul.
Erlen's aunt Monica Shebahkeget and sisters Melahat and Ozten Paul look at photos of the teen, who loves to joke around and give hugs.

While she doesn't know if starting treatment earlier would have saved him, she says it would have spared him weeks of excruciating pain. Now, Erlen gets a continuous infusion of pain medications through an IV.

"He suffered for a whole month," she said. "And it wasn't just him suffering. We all had to watch him go through it."

Ozten says her brother's breathing and demeanour has relaxed since a visit from an Anishinaabe elder last week, though he's still scared to die. The teen —always the joker of the family — teases his friends and siblings when they come to visit, but it's becoming difficult since he can no longer see them because of a tumour near his eyes.

It's a far cry from the popular kid who loved being out with his friends, rap music and basketball.

"You can really tell he misses his old life," she said.

HSC speaking with family

In a statement, a spokesperson for the HSC wrote: "Our thoughts are with the patient and his family during this difficult time."

The spokesperson wrote the HSC patient relations staff have been in touch with Erlen's family to address their concerns and needs. 

"We will continue to work with the family and the patient to make him as comfortable as possible and engage in ongoing discussions regarding care," the spokesperson wrote.
Erlen Ozkanli keeps an eagle feather, which represents his mother's Anishinaabe heritage, a Qur'an and nazars (eye-shaped charms commonly found in the Middle East) of his father's Turkish heritage, beside him for comfort in the HSC Children's Hospital.

Ozten and her father say Erlen has been getting good care and has developed special relationships with staff ever since he was admitted to the Children's Hospital. 

The hardest part, though, was getting him there.

"They should have done more testing," said Huseyin Ozkanli. "They just check his leg. Put the cast on, gave us a five week appointment and sent us home."