August 2020

Cooper’s journey began on June 16th, 2010 when a doctor believed he had a rare chromosomal syndrome called Beckwith-Wiedemann Syndrome, it is an “overgrowth” syndrome that is widely varied in its impact on children. After series of chromosomal tests, doctors confirmed that it was indeed BWS. All BWS kids have an increased risk for childhood cancer.

 

"We took in all the information and as our beautiful baby grew, we noticed he had trouble closing his mouth as his tongue inhibited him." says Theresa, Cooper's Mom. "Upon the advice of our medical team, we made the wrenching decision to have surgery done on Cooper’s tongue to reduce its size. Cooper endured the pain, the stitches, and the difficulty feeding with an amazingly good nature. As his tongue healed, I breathed a sigh of relief, but the challenges were just starting for us."

 

During a regular ultrasound after his 1st birthday, a spot was revealed on Cooper’s liver and an MRI revealed a tumor. After a 90-minute surgery, a grape-sized tumor was removed. Theresa relayed "Our incredible son took it in stride, and after a 7-day hospital stay, we were home and he was crawling again! Then the rug was pulled out from under our feet yet again. Testing on Cooper’s tumors revealed it to be a malignant hepatoblastoma. We were devastated, but hopeful that we were able to act so quickly and detect the cancer. It took our breath away when the doctors recommended a full 4 cycles of chemotherapy to keep the cancer from returning."

 

There were no good studies for Cooper’s situation, so the doctor’s were erring on the side of caution. "Every day I am grateful the cancer has not returned, even now, when we realized the chemotherapy caused irreversible hearing damage, I am just thankful my beautiful son is here with us today. The challenges placed before him have not diminished however, his autism diagnosis has led us down a path of hours of therapy and hard work to help him speak and make his way in school. Through it all, his soul shines through in his infectious joy and beaming smile. He is a quick wit and a master of words and numbers. He loves to be around people. I love the boy so much, it fills my soul and gives me the courage to carry on with clear purpose and hope." said Theresa.