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Xavier

At just two-and-a-half, our little Xavier was diagnosed with neuroblastoma – a rare childhood cancer. Unlike many with neuroblastoma, he thankfully did not have pain. His symptoms were more subtle, but they led us to seek answers. After a urine test showed markers for neuroblastoma, we were referred to a pediatric oncologist. What a frightening referral to have for one’s toddler. After several scans just before Christmas, we got the dreaded phone call that he had a mass near his spine. Unfortunately, they said surgical removal was not an option, due to the location of the tumour. When we sat down with his oncologist to review the biopsy results, she said it was a high-risk case, due to unfavourable histology. It was so hard to listen to anything else she said — at least eight rounds of chemotherapy, possibility for radiation, potential for surgery down the road, could be 18 months of treatment in total, and there were possible long-lasting side effects for our little boy. “Don’t focus on the statistics,” they said, “we’ll get you through this.” But oh how we cried.


Xavier is so little, this diagnosis is so huge, and this journey is so daunting.


He has Broviac lines coming out of his chest. He was proud to show people them, and excited that his Spider-man toy also has the same lines. He generally likes the hospital, enjoys visiting with the doctors and nurses and other staff, and loves his music therapy sessions. But it’s still been such a hard road so far. Chemo has been very hard on his little body. He gets tired, doesn’t feel like himself, and often doesn’t want to eat. He hates the daily needles to boost his neutrophils following each round of chemo. And we worry about him, we worry so much.


We went to Calgary so a specialized team could harvest his stem cells for use during high-dose chemotherapy down the road. The thought of high-dose chemotherapy is terrifying as regular chemotherapy already takes so much out of him.


Xavier had a scan at the end of April and we were so hopeful it would show great progress. We were absolutely devastated when his oncologist told us his the tumour had not shrunk at all, despite chemo being so hard on him.


We waited for a few days to learn next steps. Thankfully, Dr. Milbrandt, a pediatric surgeon in Saskatoon, agreed to try surgery, despite the complicated location. That surgery happened on May 10. They hoped to remove 80% of the tumour. The surgery went much quicker than expected and we were so anxious as we waited for Dr. Milbrandt to come out and update us. “It went very well,” he said. “I was able to remove at least 99% of it.” Finally, some good news!


Later that same day, Xavier’s oncologist told us the road ahead would not change, due to the high-risk nature of his cancer. He will have one more round of chemo in Saskatoon, two rounds of high-dose chemo with stem cell transplants at the Alberta Children’s Hospital (requiring ten weeks in Calgary), followed by radiation and immunotherapy. We remain so grateful for the successful surgery, but we are so sad it doesn’t change the daunting treatment path ahead.


We are praying so hard that our little boy can soon be cancer-free and grow up healthy and strong.


We are grateful to the many people who have provided financial support, dropped off meals, sent words of encouragement, and told us they’re praying for our little boy and for us. We couldn’t do this without supportive family, friends, and even wonderfully kind people we’ve never met. And we couldn’t do this without wonderful doctors and nurses.


And we are especially grateful for Xavier. He is so incredibly brave. He has such a beautiful light. He is caring and creative and smart and super funny, and we are so proud of him. He is a true Little Wonder!




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