Families

Cancer Free, But Never Free From Cancer

by Katie Vescelus
September 8, 2014

2013 Ambassador Matthias was diagnosed with retinoblastoma, a type of childhood cancer, when he was just 3 months old. The treatment left him permanently blind, but five years later, he’s cancer free and starting kindergarten. His mom, Katie, shares this update.

Matthias and Magnus starting school

Matthias (left) and his older brother, Magnus, on the first day of school this year.

On July 13, 2009, I held our son, Matthias, as he recovered from surgery to remove his right eye. His left eye had been removed two weeks before.

This surgery allowed him to be cancer free for the first time in his life, but it left him permanently and irreversibly blind.

I lifted him from the recovery room bed as he slept, and the nurses helped me navigate the tangled web of tubes so we could settle into a rocking chair. I rocked and sang softly to him as he awoke for the first time to a new world, one in which he was healthy but completely blind.

On August 4, 2014, just five short years later, I hugged Matthias and held his hand as he boarded the bus for kindergarten. I kissed him goodbye and again guided him into a new world. It was almost as terrifying as the day he lost his vision.

Matthias has remained cancer free, thankfully, and he has adjusted amazingly well to his world without vision. He is attending a mainstream kindergarten class and riding the same bus as all of the other neighborhood kids.

It can’t be easy to be a blind kid in a crowd of sighted ones, but he handles it with charm and class. He does the work asked of him and is respectful to his teachers, and he makes friends easily everywhere he goes. He powers through every obstacle thrown his way with an impish grin and an enthusiastic giggle.

From the outside, it seems we have left childhood cancer in the past. Any family who has fought this terrible disease, however, knows better. Cancer remains part of our everyday lives, and I have accepted the brutal truth that it always will be.

This new school adventure is another on a long list of victories our family can celebrate against cancer. He not only survived, but he has thrived in every way, despite the handicap cancer gave him.

All of these victories, however, are tainted by the constant threat that cancer will return. It is our worst fear, a constant worry.

We frequently hear of other survivors returning to treatment for another battle. I receive daily emails and messages asking for prayers and donations to help families unfairly fighting cancer again. It’s possible we may never face this beast again, but the other possibility haunts us.

How do you fight a possibility? In our case, we fight for a cure.

Matthias and Katie shaving heads for cancer

Matthias and Katie shaved for St. Baldrick’s last year.

In 2012 we joined the fight against pediatric cancer when I shaved my head for the St. Baldrick’s Foundation. Matthias and I shaved our heads together last year, and this past March he shaved by himself.

In October I will be running the Chicago Marathon as a fundraiser for St. Baldrick’s. We will continue to fight this awful disease until it is gone.

Watch out, St. Baldrick’s. We would love to put you out of business.

Read more about Matthias and Katie’s reasons for running a marathon to support childhood cancer research on her fundraiser page, and then make a donation to cheer her on.

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