Everyone always imagines the best and brightest future for their child and anything that changes that path is usually a huge hit. Our change in path started when Oak was just four and a half years-old. Finding out he had a mass on his spine of a rare disease was a shock and trauma. The mass caused him cervical instability which had him in a halo vest (a brace that is used to immobilize and protect the cervical spine and neck after surgery or accident) for five months and a cervical collar for the better part of a year after that. He had light rounds of chemo, matched with other drugs, for treatment via a PICC line in his arm.

I look back on photos of that time and he was so very small. In some ways him being as young as he was, was a blessing. It meant he took things in stride and did not understand the bigger picture. He was truly amazing through all of this. Every time there was a new test or procedure he just said “okay”. He even affectionately calls the MRI machine ‘the big donut machine’ and the CT scanner ‘the small donut machine’. He has just adapted to it all and actually enjoys his hospital visits at Sick Kids, which says a lot. We were lucky to have such an amazing support system through the beginning of this journey that really kept us as parents going for him and his sister.

It was not until the end of his five months in the halo vest that we discovered any agencies to help us beyond our support network. At that point my husband and I had not had any moment away from him because of his high-needs situation. The help we got from Chai Lifeline Canada and other organizations really was amazing. This gave Oak time at a camp with medical support that would not have otherwise been possible. Camp also gave time for my husband and I to have a break that we had not had in the almost six months since his diagnosis.

Over the past three years we have had ups and downs. His disease is complicated and will never have a remission stage. However, Oak has taught us to take things one moment at a time and really appreciate the small stuff in life. No one has control over their future and this has just really taught us to live in the now. Through all of this we continue to get support from our case manager at Chai Lifeline with awesome toys, gifts and food when we need it. They are always looking for a way to support and help us and for that we are really grateful and blessed.