In the Shadow of Leukemia, a Focus on the Little Things
Malaki was diagnosed with leukemia just two months after he arrived at his new Toronto home. Now, two years later, the family has never looked back.
It’s Saturday afternoon and Michael Went is helping his son Malaki put a final dusting of sparkles on a construction paper ornament at the 519 Community Centre’s December Children’s Party in Toronto. Later, the active 4-year-old, who loves karate, swimming and skating, will join his other father, Doug Kerr, a college instructor and non-profit management consultant, in a sing-along circle with about two dozen other children.
“I focus on him and what he wants, which is really quite micro,” Went says. “He wants a daddy to love him, he wants to be entertained sometimes, he wants food, maybe some TV. If I can focus on the moment then I don’t have to worry about the big stuff.”
“Big stuff” is a euphemism: Malaki is battling leukemia. He hadn’t even celebrated his second birthday when his fathers noticed that he had stopped walking. Went, a senior municipal financial advisor with Ontario’s Ministry of Municipal Affairs and Housing, recalls trying to get Malaki back on his feet.
“I went to the playground and put him about two feet away from the swings,” Went recalls. He told Malaki that if he wanted to go on the swings, he would have to walk to them. Instead, he just lay on the ground, screaming in frustration. “That’s when I realized something was wrong,” Went says.
Doug, Malaki and Michael
A pediatrician first thought Malaki might have an infection, but grew more concerned when antibiotics failed. A blood test revealed Malaki had leukemia, the most common form of childhood cancer. “In an hour we were taking transit over to SickKids [as The Hospital for Sick Children in Toronto is more commonly known], where we stayed overnight,” Went recalls. “Our lives changed forever.” It happened to be their wedding anniversary. “We call it crappyversary,” he says today.
Just two months before the diagnosis, Malaki arrived at Kerr and Went’s Toronto townhouse as a foster child “with a view to adopt,” meaning the Children’s Aid Society’s ultimate goal was to establish an adoption. As they weren’t yet Malaki’s legal guardians, Went and Kerr worked closely with a social worker who helped them land a judge’s permission for Malaki’s medical procedures.
Some prospective parents may have reconsidered moving forward with the adoption. “It never crossed our minds,” Kerr says without hesitation. “At that point we could have easily said to CAS [Children’s Aid Society] that we [didn't] want to go forward with the adoption, but we couldn’t. We were falling in love with him.”
The partners of 13 years took turns staying overnight in SickKids with Malaki while he underwent treatment. “Survival rates are fairly high, but you have to do a lot of chemo,” Kerr says. “He didn’t have major side effects but it’s not easy taking chemo. You are in the hospital a lot for the first six months. It is so complicated, the different drugs you have to take.” Malaki lost his hair but was spared the mouth sores that can make eating difficult for some kids who go through chemotherapy.
“The first few needles? They were hard!” Went remembers. “Really, really hard! But every couple weeks we’re doing it, he got used to it. Now when we go to the hospital the hardest part of it is not the needle, is not the entry of the hospital, it’s not the lack of food, because he has to go fasted; the hardest part is leaving because he is having such a good time. SickKids has such an amazing array of toys and people to entertain him.”
In addition to multiple playrooms, SickKids offers a weekly musical performance, craft days with the Brownies and Cubs, and a games room with TV, video games and pool. Malaki is just one of the 100,000 children who pass through SickKids annually.
Kerr and Went have explained Malaki’s condition to him in age-appropriate language. For example, he knows he has a “port” in his chest where doctors can take a quick blood sample and he uses words such as “emergency” and “stethoscope.” “I don’t know if he knows that he’s sick,” Kerr says, noting he has never used the word “leukemia.” “He knows now, but not really.”
Went suspects he might be a different kind of dad if Malaki’s health wasn’t a factor. “I think I would be a little bit less of a softie,” he speculates. “I will give in more often than not to his whims. One of the warnings that SickKids gave us is it’s a habit for parents to spoil their children, and I dare say I have veered in that direction. We give him a little too many cookies when we have coffee. When I compare to how my parents were, I didn’t have that many cookies!”
Together, Kerr and Went are a united front of positivity, focusing on the very good chance that Malaki will make a full recovery when he’ll finish his treatment in a year and not on the small possibility of a relapse. “The big stuff will happen and we will deal,” Went says. “But if I spend too much time worrying about all that big stuff then I’m going to get myself into a negative spiral, and it’s not helpful for Malaki or for me. My job is to make sure he is happy and safe and secure now.”
Doug, Malaki and Michael
Editor's note: Went and Kerr are extremely pleased with the level of care provided at SickKids, so we're showing our support by providing our readers with this link to help fund the hospital's life-saving mission with a donation: sickkidsfoundation.com/donate. Donations help fund equipment, staff training, and research. Those living in the greater Toronto area can volunteer or participate in a SickKids fundraising event, visit sickkidsfoundation.com/get-involved.