'There are two ways you can deal with this': Parenting a child through cancer

I met my husband, Khurram, just after I finished my undergrad at U of T in 2004. We got engaged, got married, and at age 23, I moved to London, England, where Khurram is from. I went to law school there, and had my first child, Yaqoub, five years after we moved. He was a healthy baby — eight pounds and tall. He was the first baby on my side of the family, and the first boy as well — we are three sisters.

We lived in London until Yaqoub was about 18 months old, and moved back to Toronto in September 2010. By then I was pregnant with Zaynah, my eldest daughter.

At first, we with lived with my parents. Khurram, who is an IT manager, found work quickly. I started studying for my qualification to practise as a lawyer in Ontario, and in early August 2011, I passed my pre-exams.

But for several weeks before I passed, Yaqoub had been showing a number of concerning symptoms: persistent fevers, nausea, bruising, sudden weight loss and limping. We took him to our pediatrician several times over the course of nearly two months, but the pediatrician seemed to feel that whatever Yaqoub had was viral and would run its course. At our last visit, he told my husband, “Your wife is overreacting.”

Yaqoub also had protruding ulcers in his mouth, so we took him to see a good friend’s father who is a dentist. He had never seen anything like it, and recommended different remedies, telling us to bring Yaqoub back if they didn’t help. Yaqoub’s legs became very weak and he had trouble walking. He lost 10 to 15 pounds. He was back in 12-month-old clothes, even though he was more than two-and-a-half and quite tall for his age.

He stopped eating; he was very cranky. My mom suggested that I take him to see my own GP, who I’d had since I was five years old. Dr. Gaur looked at Yaqoub and said, “This is one of the palest children I’ve ever seen. He needs blood work.” I was about to take him for the blood work the next morning when he fainted. I phoned my doctor and he said, “You know what, Zubdah? Take him straight to the hospital.”

Fifteen minutes after they took Yaqoub’s blood, the doctor walked in — a huge guy, I still remember to this day — and he said: “There’s a 97 percent chance that your son has leukemia.” I didn’t hear anything; I just heard leukemia. I started crying hysterically.

Khurram came and we got in an ambulance with Yaqoub to take him to Sick Kids. I had never seen my husband cry. He was desperate to hear that this wasn’t true. He was asking the paramedic: “They’re saying this, but… do you know?” You’re living with that little bit of hope. At Sick Kids, there was a whole army of people waiting for us. They were fantastic. They brought Yaqoub toys and chocolate milk and did whatever they could to make him comfortable.

On August 9, 2011, Yaqoub was diagnosed with acute lymphoblastic leukemia (ALL).

When a child has ALL, the lymphoblasts (immature white blood cells) fill the bone marrow and crowd out other normal cells, preventing the production of red blood cells (which carry oxygen to tissues), many other types of normal white blood cells (which fight infection), and platelets (which help blood to clot). It is the most common type of cancer in children. (We were told if you are going to get cancer this is the type of you want to get. Try wrapping your head around that one…) Yaqoub’s white blood cells had mutated to over 50,000 (the average is 4,500–10,000). He was two years, nine months old.

My Yaqoub is a very timid and soft little boy. He was — and still is — a child of few words. He mostly laughs and plays. But that first day in the hospital, you could see he knew something wasn’t right. The fear in my eyes and my husband’s spoke volumes. Yaqoub was quiet and just looked around. He asked to go in his stroller and be covered up with a blanket anytime someone entered the hospital room. Over the next few days, the only people he would allow to look at and speak to him were myself and his dad, Zaynah, my sisters and my brothers-in-law who flew over from the U.K. with Khurram’s mother and nephew.

With leukemia, it’s not like the cancer is in a tumour — the cancer is in the blood. You can’t take it out. The white blood cells mutate into cancer cells and invade the entire body. That first day at the hospital, the doctors were explaining all of this to us. We were just trying to take everything in, rolling with the punches. They were phenomenal. They said, “Ask as many questions as you want. Ask them over and over.”

I didn’t leave the hospital for two weeks. Khurram and I were in one room with Yaqoub. There’s no communication; there’s just fear. You see your partner — a happy, relaxed guy — shedding tears, and it breaks you. I didn’t have words to comfort him; nothing in the world can make you feel better.

My sisters sat me down and said, “This is the hardest thing for all of us to deal with. For you, as Yaqoub’s mother, I can’t even comprehend. There are two ways you can deal with this. You can cry and make yourself ill, but then who’s going to look after your child? Or you can get up, get dressed, and deal with the next steps.” It took me about a month to get myself together, and I would have good days and bad days.

Yaqoub had surgery to embed a portacath — an implanted catheter that connects a port into which medicine can be fed to a vein. The portacath went through his jugular line and into his heart. That’s where his chemotherapy was administered, so he didn’t have to be poked every time.

The intense chemotherapy started, and by intense I mean weekly, intrathecal chemotherapy, where they gave additional treatment in the spine and for which Yaqoub was sedated. He would come out of sedation and then be required to lie on his back for almost an hour. At first, he would scream and cry when he woke up — he wanted to be in my lap — but by the end of his treatment, he would just lie there. It became the norm, and that’s the saddest part. How is this normal for you, Yaqoub?

When you’re on chemotherapy, your counts drop and there is nothing protecting your immune system, so you are very susceptible to infections and viruses. If you’re under a certain threshold, you are automatically admitted to hospital until your counts come up. A standard day during Yaqoub’s treatment consisted of 12 hours at the hospital, with Yaqoub receiving chemotherapy and any necessary transfusions and having his blood counts checked. We would just come home, sit down for dinner, and Yaqoub would spike a fever. We had to run back to Sick Kids and were often admitted. That went on for about two years.

All our holidays — Eid, Christmas, New Year’s, Halloween — were spent at the hospital. The first year, we spent 190 days there. I had to quit breastfeeding my 10-month-old cold turkey. Sometimes, the daycare would call me and say, “Zaynah’s crying, we’re not trying to upset you, but do you want to hear her voice?” I wouldn’t see her for weeks at a time; my mom and sisters were raising her.

My husband and I were basically living apart. He would go to work, come and be at the hospital with us, and then go home. But really, for two-and-a-half years, we lived apart. You lose those years.

Yaqoub finished treatment in 2014, and soon after that I discovered I was pregnant with my youngest daughter, Zoha. I was petrified; I needed to focus on Yaqoub.

But, honestly? Zoha has taken away from the difficulties of Yaqoub’s illness. My other two kids adore her. She’s two-and-a-half now. Yaqoub calls her his pet monster. When she sees him, she goes running to him.

Yaqoub, who’s eight years old, has now been in remission for three years. He lost a lot in terms of his academic and physical development, and we are working to help him catch up. He’s on track now with walking and talking; he’s even running. I have physio at home; I have OTs. Zaynah, who’s now six going on 16, may be his best therapist. They’re very close; she pushes him and also advocates for him. We try to focus on little goals, like learning to ride a bike. There are fine-motor skill issues. We have a computer for him, and he’s starting to write. He’s quite persistent and determined; he works extremely hard. I think he gets that from me.

My priorities have changed. The things you go running after, the things you think you want out of life — that changes. You want to do good. The support and generosity and empathy I’ve had from people — I want to give that back. Every Mother’s Day my family and friends do the annual Sporting Life 10K for Camp Oochigeas in Muskoka, a camp for children who’ve been through cancer or who have lost a sibling. It’s changed Yaqoub’s life. This year, Team Yaqoub’s aim was to raise $3,500, which is what it costs to send a child to the camp for two weeks. In the end, we raised $10,000. We are so fortunate to be surrounded by amazing friends and family who are always on board to help, participate and donate.

My friends say to me, “How come you never say ‘Why my kid?’” And I say, “Because, when I step into Sick Kids, everybody says ‘Why my kid?’ Every mother would be saying that.” We don’t pick and choose what we get in life. Once your child is diagnosed, you live with that. I don’t sleep a lot. It’s always in my mind.

My final licensing exams — the ones I had to take to qualify to practise law here — lingered over my head for a very long time. I wrote my last one in March, and I’m being called to the bar in June. The first week of April, when I found out that I had passed, I cried a lot. My little warrior came to mind — what he’s been through, what we’ve been through, what I’ve learned from him. I thought I was about to break, but I kept going and he was my driving force. He’s endured a lot, but he’s so positive about life. He loves the outdoors. He couldn’t walk or even sit up at one point. Now? You leave him outside. He’s always running. I tell him, “You’re like a 100-metre sprinter.” And he gives me a big smile.