“He had a bit of a rush with his initial protocol. He’s the one on the right. He was diagnosed with a rare form of Leukemia – called philadelphia chromosome acute lymphoblastic leukemia in March 2011. He was treated for pneumonia, meningitis, an unknown fever and so forth. He got through and completed the protocol in October 2013. Nine months later he relapsed. He was then given a bunch of chemotherapies, and we were told that we were going to go for a bone marrow transplant. But, he developed this fungal infection called mucormycrosis and it had a 90 percent mortality rate. Luckily, we had an amazing team of doctors who really did their out most to save his life. He came out of this with two-thirds of his pallet removed, some bits of his nose, and a lot of cleaning up on his face and sinus cavity. It’s an emotional, physical, and spiritual breakdown of a person. He was 10 years old. He didn’t understand what was going on and why they did all of this, and that’s very very sad. But we persevered and got through it. But then he relapsed in the spring of 2016 for the second time. We were faced with a really difficult decision because we weren’t sure if the mucormycrosis would come back. But were going to march to the beat of his drum and explain what was going-we wanted it to be his decision. We explained, you know, you may die from this, you may go right through and whatever it is, we completely support your decision. And he wanted to go through it. His opinion was like ‘you’re damned if you do and you’re damned if you don’t’.”


“Every child would ask my me. Can’t answer that question – nobody knows why people have cancer. But you know, there is a take home message to how resilient those people are who survive and the parents that get them through it. I remember a time after his surgery, he said ‘I want to die, you should’ve let me die before they even took out my teeth’. But I tried to explain to him that if he had left or passed away, he would’ve left a really big hole in my heart. And I’m really grateful that he’s still here, despite all of these things. Going through chemo there’s a lot of things that they pump into a child’s body that shouldn’t be there. Emotionally it just breaks you. And it’s hard on marriages. I’d like to think that my marriage was pretty strong coming into this, but my husband and I separated two and half years ago. It was just too difficult. As a family you go through a lot. And we’re incredibly thankful for every single day that he’s still with us, but those hard days are difficult and sometime hard to overcome. This summer was his first summer without any treatments, without anything sticking out if his body for cancer or whatsoever. He was able to go swimming, kayaking, do stand-up paddle boarding, and he didn’t have to worry about anything. In December we hope to be able to celebrate the 1 year anniversary of his CAR-T cell – which then gives hime 93 percent change of surviving and having a normal life.”

HUMANS OF OTTAWA 

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