Finding our space

When your child is diagnosed with cancer, you feel isolated from everyone. It’s not necessarily that people make you feel like that, well some do, but you just are. You are that, “cancer family.”

The childhood cancer community is similar to normal society. People who have nothing in common, find commonality and friendship because you share one common bond…cancer. I often struggle with my place in this community, as I do occasionally in
normal society.

When your child is diagnosed with a cancer that has no cure, you are on an island within the childhood cancer community. There aren’t many treatment options, limited clinical trials that you have to wait for (time is of the essence), the prognosis is less than 1% and you are 100% reliant on hope.

Shane’s cancer was rare. Childhood cancer is not rare.

When your child dies from cancer, you find it hard to balance where your place is in normal society, as well as in the childhood cancer community.

It’s like you climb to another island within the childhood cancer community. You want to bring awareness to your cause, but not let others lose hope. You represent all their worst fears.

The truth is, cancer doesn’t discriminate.

Life is ever evolving. The people in your lives come and go depending on the circumstances. We lost people in our lives when Shane was diagnosed and more when he passed. For all of those who left, we
gained so much more. The support and love from so many who weren’t afraid to share in our loss and have helped create Shane’s legacy.

When I became pregnant with Will, he was a gift. It wasn’t planned, it just happened. We never wanted to replace Shane. While he has helped us acclimate more into normal society, it has left us again on another island in the childhood cancer community. Life after grief and loss.

Obviously, we are not the only ones who have lost a child to cancer, to go on and have another child. It hasn’t been an easy journey. My pregnancy was smooth, but there were many emotions attached that made it less than smooth. It’s still there, even as Will grows. Shane was diagnosed at 8 months, Will is currently 6 months. We hope that maybe once we hit his 2 year birthday, we may be able to breathe again.

The new found life and happiness separates us. What doesn’t is the passion and connection we feel to this community.

Our journey without Shane is now at the three year mark. Our journey is less about Shane’s diagnosis and more about what Shane is doing for the future of
rhabdomyosarcoma research.

The legacy Shane has left is remarkable….

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