Helping Quinn Find a Cure

Quinn Demko's Story

On November 22, 2013 Quinn was diagnosed with a massive brain tumor. On november 29th Quinn underwent extensive brain surgery to attempt to remove the tumor and determine what had caused it to grow. The doctors at rainbow babies and children's hospital were able to remove most of the tumor. However the nightmare was not over, some of the tumor had to be left behind as it was attached to a main artery in his brain and worse yet the diagnosis was an aggressive, rare brain tumor called sPNET.

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Quinn is one of the most amazing kids in the world, his smile is absolutely infectious.

Everyone who meets Quinn falls instantly in love with him. He is definitely all boy between his rough and tumble antics, his love of all things spongebob, and his ornery sense of humor he keeps his family on their toes.

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Where We Are Now

A few days after Christmas, 2014, we received the devastating news that Quinn has a new tumor in the same tumor bed. We are heartbroken as we know the likely outcome. A scan a few weeks later shows that the disease is progressing. We were offered treatment including surgery, chemotherapy and radiation. These treatments will only extend life – at a cost.¬† We have spent hours looking into clinical trials and alternative treatment only to decide it wasn’t worth the risk. Due to the location of the tumor, another craniotomy may leave him mute and paralyzed. More chemotherapy would leave him deaf, and radiation turns his young brain to mush. Again, these treatments are only to extend life. After much thought, we have decided that this is not the kind of time we want to buy. We have declined medical treatment and want to spend the precious time he has left at home surrounded by family.

The Back Story

On November 22, 2013 Quinn was diagnosed with an aggressive, rare brain tumor called a sPNET. On that day It felt as though the world had stopped. For those of us who know Quinn and his family it just felt so unfair, we couldn’t understand how this could happen to our little man. On November 29th Quinn underwent a 12 hour¬† brain surgery to attempt to remove the tumor. The doctors at Rainbow Babies and Children’s Hospital were able to remove most of the tumor. However, the nightmare was not over, some of the tumor had to be left behind as it was attached to a main artery in his brain. He was given a 50-60% chance of survival.
Quinn’s course of treatment included 3 rounds of chemotherapy followed by 3 rounds of high dose chemotherapy with stem cell rescue. He completed chemotherapy at Rainbow Babies and Children’s Hospital in June 2014. Just 5 days before his 5th birthday. Our family then temporarily relocated in July 2014 to Philadelphia. Quinn received 31 sessions of proton radiation to the tumor bed at Roberts Proton Center. He completed treatment in August 2014 and we returned home. He started kindergarten one week later.

The journey is far from over for Quinn and his family. This brave little boy faces a long road ahead full of testing, surgeries, and treatments. My hope is to also make it a road paved with love, support and hope. We will not give up hope for Quinn, he deserves the world and we are making it our mission to give him a fighting chance. Please keep Quinn and his family in your thoughts and prayers and please help us support this sweet little boy by providing a donation via PayPal to Quinn.

Email Patricia, Quinn’s Grandma to find out how you can help