Noah, 1, has blonde hair that stands up in exuberant spikes on his head. He loves to smile. When his dog licks his head, he giggles. If his mom Ivona Novak tells him not to go near an electrical outlet, he laughs and moves faster. He takes great joy in eating croissants, which he calls ‘Cru Cru.’ Only his mini-wheelchair hints at the cancer he was diagnosed with at less than three months.
Noah was successfully treated with chemotherapy. But the cancer came back in his spine, and he had to be treated again. He now has a spinal cord injury. “The doctors said they’d never seen a case of neuroblastoma like this in a kid under 18 months,” Ivona says. Recently Noah received physical, occupational and speech therapy for three months in Holland Bloorview’s day program. We talked about their journey.
BLOOM: What are Noah’s favourite things?
Ivona Novak: He likes to army crawl. He’ll take a car and hit it and then chase after it all over the house. He loves coming here. He loves attention and when people talk to him he’s all giggly and smiley. He loves Keith.
BLOOM: You mean Keith Adamson?
Ivona Novak: Yes, he always plays with him.
BLOOM: How is Noah doing now?
Ivona Novak: He’s in remission. He has an incomplete spinal cord injury from a tumour. His chest and up is functional and he has use of his arms, but he has no functional use of his legs. Before he came to Holland Bloorview he couldn’t sit on his own, move from lying to sitting, or army crawl. He was fully dependent on me. The therapists here were fantastic at using toys to try to get him to do different things, and he’s made remarkable improvement. It’s incredible how much strength he has in his upper arms. That’s made my life easier and made him so much happier.
BLOOM: You mentioned you liked our therapeutic playroom.
Ivona Novak: It helped him become more comfortable with people. He was scared of adults because of the poking and prodding in the intensive care unit and wouldn’t let anyone else pick him up. Having adults who were just going to play with him helped him be more confident and mobile. He was able to make friends with kids who are more like him. I had been worried about how other parents and children in the community might respond to him. The playroom was a safe environment without any judgment. That experience gave me the confidence to take him to our Early Years Centre.
BLOOM: That's great. Did you have any experience with serious illness prior to Noah’s birth?
Ivona Novak: No experience. It was such a huge learning curve. I used Google so much.
One thing I learned is a parent’s intuition is better than a doctor’s. Before we knew cancer had come back, I kept saying something was off. The oncology unit said they couldn’t see anything and thought he was teething. I took him to emergency and they sent us home that night. The next morning he hadn’t moved from the position I put him in and he hadn’t peed overnight. We went back to emergency and I said ‘Something is terribly wrong, he’s not moving his legs.’ Finally that night they did an MRI and said there appears to be a tumour blocking his spine.
BLOOM: How did you cope with such drastic swings in Noah’s condition?
Ivona Novak: Your baby is in ICU, and you know not everyone gets out of ICU. We were a crying, giant mess. I needed to sleep, but when I lay down, I couldn’t. We called our doctor for sleeping pills and my husband was on his drugs and I was on my drugs—to survive.
BLOOM: What advice would you give other parents in similar situations?
Ivona Novak: You have to take it day by day, which is hard. We got big pieces of paper and whenever there was an improvement, or he did something good, we’d write it down and hang it up. So there was a room full of hanging papers to track progress and help us feel better. The other thing I'd suggest is to really advocate for your child if you’re not satisfied with an answer, or with what someone’s doing. No doctor or nurse was offended when I came with more questions or did my own research.
BLOOM: Did anything else help?
Ivona Novak: I used to meet with Val Lusted, the social worker here, once a week. She was fantastic. It was nice to have an hour where Noah is not with me. It was nice to rant and put my thoughts on the table.
I follow a very active spinal cord injury forum called the CareCure Community. There aren’t many people with kids with spinal cord injury. This is a forum of mostly adults that’s hosted at a university and there’s a nurse that joins in on discussions. I heard about a Shriner’s program in Chicago on this forum. They’ve seen some kids as young as Noah and we’re going there for two to three weeks in March. It’s a non-profit and they will cover the costs and our airfare. They have equipment there—like the Lokomat—for kids Noah’s size.
The more I’m immersed in this community, the more I realize you have to do your own research. Every person has a piece, but they don’t have the whole picture.
BLOOM: Were you generally happy with Noah’s medical care?
Ivona Novak: Yes. The only thing that was hard was the way we were given information when Noah was in the ICU. We had a team lead from each unit—neurology, neurosurgery and oncology—coming in. They would give different information, which was confusing. It would have been better to have a funnel where all of them spoke to one person, who then communicated to us.
BLOOM: So right now Noah is in remission?
Ivona Novak. Yes. As long as the cancer never comes back, no matter what happens, I’m happy that he’s alive. We always get nervous around exam days—like when he has to get an MRI. We haven’t stopped thinking about the cancer.
No one can give us an answer on how the spinal cord injury will affect Noah. Every spinal cord injury is different. It’s hard to accept not knowing what his outcome is going to be. I’ve asked every doctor and physiotherapist ‘What do you think the chances are that he’ll walk?’
Getting a wheelchair was a huge step to realizing he has a disability. You see a kid in a stroller and you see a cute kid. You see a kid in a wheelchair and people stare and wonder what’s wrong. That transition between having an image of a normal-style family to accepting that we have a kid with a disability, regardless of how much function he gains or doesn’t—is hard. But we have to live in the now.