OUTLOOK - Watching him ride his bike or play with the dogs in his backyard, it is hard to imagine what the past two years have held for Benny Grunerud. Like so many little boys he enjoys Paw Patrol, dinosaurs, Tigger, and toy trucks, but his world has also included tests, blood work, ports, treatments, injections, pills and numerous hospitalizations, because under the curly blonde locks and sweet smile is a young boy battling leukemia.
Rob and Miranda Grunerud have two children, daughter Harlow who is seven, and son Benny who will turn five on June 21. In February 2021, two and a half year old Benny was diagnosed with Acute Lymphoblastic Leukemia, a cancer of the blood and bone marrow.
“He’s doing okay,” Miranda said. “We have never said he is doing well because we don’t want to jinx it, but he’s still in treatment and the doctors say he has tolerated it.”
After noticing symptoms such as shortness of breath, along with bruising on his legs and arms, Benny was seen by a doctor and sent immediately to emergency. Following tests, they received news no one wants to hear. “It was scary,” Rob said. “My experience with cancer was that everybody died. The word to me meant pain, suffering, sickness and death. It’s a bad word.”
Rob and Miranda knew a bit about leukemia, but had to learn about the particular type Benny had. Significantly, they did not search the internet. “That’s the worst thing you can do,” Rob said. They were given a binder filled with facts, diagrams and reputable sites if they wanted to learn more, but neither looked at it much. “We brought it home,” Miranda said, “and some extended family looked at it but when Rob took a look it made him worried and sad, so we never really opened it after that.”
Life changes for the family
The moment they received the diagnosis, life changed. “For that first while you don’t know what to do, you are so overwhelmed,” Miranda shared. But a social worker met with the couple to talk about what they were going to need.
The first step was to contact Rob’s employer. “I went off work,” Rob explained. “Mentally I couldn’t have done it. I work in a dangerous place, in a mine 3600 feet underground. I was not going to be able to keep my mind on what’s going on at work.” Additionally, they would be travelling to the city five days a week for tests and treatment and that’s where Rob’s focus needed to be.
Another task was telling big sister Harlow that Benny was sick. “We were blunt,” Rob said. “We didn’t make it scary. We told her that he’s got leukemia and we have to go and get rid of it.” Miranda added, “We made sure we presented it as not being so scary. If you tell a kid something, they only know what you tell them. So we said, ‘Benny is in the hospital because he has cancer and his cancer is called leukemia.’”
Harlow’s life certainly changed too, particularly regarding whether or not she would attend kindergarten since bringing home any cough or bug could potentially have harmful consequences. “If an immune compromised kid catches something it could be a month or two fighting it,” Miranda explained, “and that could mean another hospital admittance.” On the other hand, they had to consider Harlow’s needs. Rob summed up the painful discussion remarking, “How do you give one child as normal a childhood as possible when you don’t know if your other child is going to have a childhood at all?”
Ninjas doing their job
Harlow stayed home for kindergarten but attended school in grade one, and thankfully there were fewer hospital stays this year. She is a loving sister and good support to Benny. Miranda said, “When we go to the clinic she knows what to do. When he’s hooked up to the line for chemo she’ll sit with him and they watch TV or carefully play together.” Rob and Miranda used the example of ninjas in explaining treatment to their children. “We told them chemo is like ninjas and they are fighting the leukemia away,” Rob explained.
A treatment cycle includes chemo at home in pill form and then to the hospital for treatments through his line. Twice each month they do a lumbar puncture. “The first year and a half was pretty hard,” Rob shared. “We were going to the hospital 3-5 days per week for pretty intense treatments.” Benny completely lost his hair twice, as well as a lot of weight. Miranda added, “There were spells of nausea and throwing up and then finding out he was allergic to some of the medications. There were infections and just lots of setbacks.”
It is all part of the journey that comes with wondering what tomorrow will bring. Rob describes it as “a step forward and seven backwards.” But they can’t say enough about the care Benny has received through it all. “The clinic is a great place for kids,” Rob remarked. “The doctors and nurses in pediatric oncology are so good. The first year with all the hiccups and infections we lived there on and off for over 150 days and they were like family.”
Miranda said, “Benny feels the nurses are his friends. So he asks all the time when he gets to go see his friends because he wants so badly to see them.”
In addition to great staff, Miranda said they are very grateful for “every single thing” they received in terms of community support in the form of fundraisers and encouragement. “It was overwhelming,” Rob said. “I’m still overwhelmed by it. It means a lot. I’m never ever going to forget it and I’m going to try to give back every chance I get.”
Some good news
It has been a difficult two years for Benny and his family but his parents received news recently that suggests Benny’s last round of chemo could take place in June. It was surprising since the original plan was three years of treatment because that is what was advised for boys. But at an appointment in March a doctor indicated treatment was soon coming to an end. Rob corrected him but the doctor stated it again. Rob looked at him and said, “You definitely have the wrong file. This is Benny we’re talking about. There’s been nothing smooth about this ride.”
After double checking the information it was confirmed that June will be Benny’s last round of chemo. While Rob and Miranda searched for Kleenex for their tears, they were told studies out of Europe found no significant difference in adding extra treatment time for boys.
The couple has done the math trying to figure out how this fits in with the steroids he is on and a lumbar puncture he needs, but they are optimistic about what this means. “This is quite exciting,” Rob said. “We’re taking it as a win because there’s not a lot of winning in cancer.”
Trying to balance what is in Benny’s best interest along with giving him a typical childhood has resulted in difficult decisions for his parents, including what to do about kindergarten in the Fall. “It could take up to six months for his bone marrow to fully recover, and that’s where your immune system is,” Rob remarked, “so we’ll have to see where he’s at in August.”
His parents are delighting in the fact that Benny is getting back to the little boy he used to be. Miranda said, “We have noticed the past four or five months he seems more like himself, more like the kid he was before.” It makes her optimistic even as they face continued check-ups, so she doesn’t want to get ahead of herself when it comes to celebrating. “It’s been this way before that we think we are at the end of something and then there’s a hiccup; a bacterial infection, hospital admittance, an allergic reaction. We want to do a big community party, but that will come later.”
Playdates and a party
In the meantime, another party is in the works for Benny; a birthday party in June as he turns five. It is a celebration he is excited about now that he can have outside playdates with other children; a major milestone for him.
As our interview came to a close Benny was playing with the dogs. “He likes treats,” he remarked with a smile. Watching him play, most people wouldn’t know what he’s been through. Miranda remarked, “When his hair came back and as he gained weight you wouldn’t have known he had cancer. Now he likes riding his bike, playing, and looking at ants and bugs. He’s just Benny being Benny.”
Prior to his son being diagnosed, Rob said the word cancer meant pain, suffering, sickness and death. He said cancer is still those same things, but there is one word he adds now…hope.