James and Emily's Story

James and Emily's Story

From the day our twins were born, James and Emily were never apart. They did everything together. But when they were six, this changed in a way I never could have imagined.

James began having movement difficulties, becoming clumsy, uncoordinated, and falling, a lot! Then he began having trouble seeing. That was the last straw. He was scheduled for an MRI.

On Christmas Eve the doctor called to say that my husband, Dan, and I should prepare for bad news. We spent the holidays worrying what the New Year would bring.

On January 3rd, our world changed forever. James had a brain tumour. In fact, he had more than one. James needed immediate treatment or he could go blind. We were devastated.

When something like this happens, especially with twins, both children suffer. Emily told us that she didn’t know what a brain tumour was and didn’t understand what was happening.

Emily says, “I thought James just had a cold or something and that he’d get better. I could tell that Mom and Dad were really scared and sad though, and their stress started to rub off on me. I began to sleepwalk.”

For sixty weeks, James and I spent every Wednesday at the hospital for chemotherapy. He became known as “Sir James” to the nurses, told jokes to his doctors and wore his SpongeBob t-shirt that read: “Get out of my brain!” Despite his determined spirit and sense of humour, it was a difficult time that had a significant impact on Emily as well.

“It was hard for James when he was on treatment, but it was hard for me, too. I lost my playmate and suddenly mom was spending all of her time with James.  I started to feel that I was being forgotten.”

After chemotherapy, and despite all the best efforts of his doctors, James became legally blind. We were all disappointed, but we worked together to adjust to this “new normal.”

This is when we learned about Brain Tumour Foundation of Canada, and soon joined the BrainWAVE support program for families facing a pediatric brain tumour.

As a family we have benefited enormously from the programs and services made available to us by Brain Tumour Foundation of Canada, and for that we are extremely grateful.

Information Days are not only sources of information, but of inspiration. They allowed us to connect with other families and to share our experiences. The patient handbooks provided comfort because whatever we needed to know was available right there at our fingertips.

In the beginning we were so overwhelmed with appointments and information. Newly diagnosed families need a chance to connect right away.

The parent support group has also given us a personal connection with others facing the ongoing challenges of being parents to a child with a brain tumour. All of these programs and services have helped to make our family’s journey easier.

BrainWAVE events have allowed our family to participate in activities which would have been too difficult for us to do otherwise. They have done so much to improve not only James’ quality of life, but that of Emily and our entire family.

Emily and James now volunteer at the Information Day Kid’s Conference they once attended as children. It feels really good for them to give back. Making this social connection helps us all.

To date, James has had 75 MRIs and there are many more in his future. He takes this in stride as he attends the school for the blind in Brantford, Ontario. He is busy with sports, DJ’ing and a special music recording class – all while learning to live with this life-long challenge.

James’ tumours are a result of a condition called Neurofibromatosis-type 1. His condition keeps changing. Living with this diagnosis is why we need research dollars. We need to improve the cure rate and to give those living with a brain tumour the best quality of life possible.

Our family is asking for your continued support. Brain Tumour Foundation of Canada receives no government funding and relies solely on donations from individuals like you to provide the education and support which is so important to families like ours.

Your donations are also vital for helping to fund important, ongoing brain tumour research. Your gifts help to improve treatments, and provide families with hope for a cure. And that is priceless.

Thank you so much for your continued generosity and gifts

“If I had to pick my biggest hero in the world, I would pick my twin brother, James. No matter what he has to deal with, he always has a smile on his face and he never gives up. He is the bravest person I know.” Emily 

Most Sincerely,

Cathy

This story was originally shared in 2012. 

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