As a physician, Pegah Shahriaree thought something was wrong with her usually happy baby, but as a mother she knew it.
“As a doctor, you know some stuff but you don’t know everything,” said Shahriaree, an internal medicine specialist at Scarborough General Hospital. “As a mom, your gut feeling is right 99 per cent of the time.”
Shahriaree was right, and in January 2015, her 16-month-old son was diagnosed with acute myeloid leukemia, and died on Nov. 21 at the age of 3, leaving Shahriaree, husband Kayvan Kalbasizadeh, and their daughter Jana, 8, devastated.
“I know he’s only been with us for three years but I feel like I lost someone who I knew for years,” said Shahriaree, who moved with Kalbasizadeh to North York from Iran in 2002.
Initially doctors thought Aryo had an ear infection and, after two rounds of antibiotics with no improvements, doctors did an ultrasound in early Janurary 2015.
But Shahriaree kept pushing for more tests, Aryo’s pediatrician finally agreed to do blood work.
“(You) shouldn’t stop looking for an answer,” Shahriaree said. “[You] have the right to look for an answer.”
Aryo was taken to SickKids for a blood test on Jan. 27, 2015 at 8 a.m. and 20 minutes later Shahriaree and Kalbasizadeh received the call that changed their lives.
“[The doctor] called me frantically,” Shahriaree said.
“He said, ‘Wherever you are, don’t go home, stay in the hospital. I’m asking the emergency staff to admit Aryo.’”
Shahriaree and Kalbasizadeh decided to be open with Jana about her brother’s illness. A nurse from SickKids explained to Jana what blood is and how it works, and she was able to understand that this was a serious disease but that it was not contagious.
When chemotherapy and other treatments were not effective in Aryo’s case, it was decided that a bone marrow transplant would be a good option, Jana was a match and the transplant took place in May.
Jana realized she had helped her brother but there was more she needed to know including about relapses. The family was referred to Dr. Jay’s Children’s Grief Centre by SickKids for counselling.
Ceilidh Eaton Russell, a researcher and former counsellor with the centre, explained that children often make up their own explanations as to why something bad is happening, and those explanations can include blaming themselves.
“It’s important to know that a lot of the times it’s lots of conversations, not just one conversation where we do all the information sharing at once,” Eaton Russell said.
“Always start by asking what the child knows so far about what’s happening and that’s a really good way to assess if there’s anything they’ve noticed or worried about.”
In the past year Shahriaree stayed on a part-time work schedule, and Kalbasizadeh, an architect, took time to be at home with Aryo.
“When I’m at work I think I’m doing something useful, I think I’m doing something for people who need me, there’s some usefulness and some hope as you work through your days as a doctor,” Shahriaree said.
“It was hard when I had patients who had to go through the same thing we were going through, a lot of the time I had to share my own experience to my own patients just to give them a little perspective.”
At the end of July, just a few days after Aryo’s birthday, it was discovered that his cancer had returned, devastating the family.
Although Shahriaree and Kalbasizadeh have been open and honest with their daughter about Aryo’s condition, they decided not to tell her about the recurrence, so they could enjoy the summer together.
“I’m happy he experienced a little bit of normal life and what it could be,” Shahriaree said.
As Aryo’s health worsened, Shahriaree knew he was going to pass away, she and Kalbasizadeh, had to discuss palliative care for Aryo, and to let go of treatments that were not beneficial to his overall care. They had an honest discussion with Jana about what was happening.
“Lots of people think kids are too young to understand death,” Eaton Russell said. “They’re not too young if you help them understand…When we talk about it together, very young kids, like four years old, can understand a lot more than people expect.”
Shahriaree began planning for Aryo’s death the week before he died.
“I wouldn’t tell my husband, I wouldn’t tell anyone,” Shahriaree said.
“I wanted to have a celebration of his life, I wanted to do something meaningful as well for Jana.”
Shahriaree and Kalbasizadeh arranged to have Aryo moved to Emily’s House, a pediatric hospice in Toronto, when his condition rapidly worsened.
“There was a debate about whether we should let Jana come see him or not,” Shahriaree said.
“Eventually, a doctor came in and said ‘you know, you’ve been preparing her for weeks, talking and explaining this, so it’s better for her to see him and have time to say goodbye to him, because otherwise she will miss this part and it will be haunting her in the future’.”
Sandra Ross, director of clinical programs at Emily’s House, said the staff counsels to families who have lost a child on how to approach the subject of death with siblings.
“Children will imagine the worst,” Ross said. “Whatever it is that they get in their imagination is likely to be worse than actually seeing a sibling’s body, that is peaceful and calm, and that nothing terrible has changed.”
Jana was emotional but wanted to see her brother, to spend time with him and say goodbye, Shahriaree said.
“She hugged him, he was still warm,” Shahriaree said. “It looked as though he was asleep. Nothing scary, no bleeding.”
Family and friends from all over came to the celebration of Aryo’s short life. Many recited speeches, poems and songs, in English and Persian. They focused on Jana too.
“Instead of looking at a child’s life as a novel, that you only got to read the first chapters of, it’s a short story— with a beginning, middle and end,” Russell said.
For Shahriaree, her experience with her son’s illness and death made her see her life as a mother and doctor in a different way.
“I don’t understand why this happened to us,” Shahriaree said.
“But I’m hoping at least it makes us better humans, and to be out there for people who need our service, just to hold their hand, listen to them.”