KSON Going Gold for Claire Elizabeth Devins

September 16, 2016

Read Claire's story from mom Liz below: 

"Your child has cancer."  Those are the words that turned our world upside down forever. On November 13, 2006, after struggling with flu like symptoms and noticing that our daughter Claire's left eye was deviating inward we took her to our local children's hospital ER. An MRI revealed the worst news possible. Claire, just weeks from her 2nd birthday,  had a mass the size of an orange in her brain. We were immediately admitted to the hospital and talk of surgery was boggling our minds. Five days later Claire had her first brain surgery and the news just got worse. Her diagnosis was Atypical Teratoid Rhabdoid Tumor, AT/RT. In 2006 this type of cancer had only been recognized for a short time and the prognosis was dismal. We were told that the treatment was extremely toxic and the outcomes were mostly poor. The discussion turned to the doctor informing us that another practical option was to take Claire home and live out the the months she may have left. Slammed with this information, we made the decision to take a day or two to decide what was best for our daughter. The load was heavy and we had no idea of where to turn. We thought there had to be more options but we didn't know where to look. We prayed like crazy for answers and that answer came in the most amazing way.

I had promised Claire a ride on the new carousel that opened  at our local mall. She and I approached the carousel and I was stopped in my tracks by an advirtisment for St. Jude Children's Research Hospital. I had no idea what or where they were but I literally got chills and felt this was a sign. When we contacted St. Jude and told them that we felt so hopeless, we heard the words we so desperately needed to hear, "don't give up, there's always hope". It was explained to us that their protocol for AT/RT was very different and they had some success with treating it. This was music to our ears and just the hope we were searching for. 

Claire battled brain cancer for 4 1/2 years but through it all she remained strong bubbly and so vibrant. Nothing will ever compare to the pain our family endured when Claire died on May 10, 2011 at age 6 years 5 months.  She is the strongest person I'll ever know.  Claire loved to dance and sing. She loved princesses and everything pink. She was an amazing little sister to her 4 siblings and remains our inspiration to keep battling to bring awareness, funding and ultimately, a cure for childhood cancer. Although we grieve our precious Claire every day , we remain grateful for the gift of time with her that St. Jude gave us. Had we listened to the first doctor we may have taken Claire home only to lose her months later. The lesson of hope we gained through St. Jude and Claire will be one that carries us through till we see our sweet girl again. 

"There's always something to believe in"

KSON Going Gold for Claire Elizabeth Devins