Contact the Organizer
Brian and Christy DePratter’s daughter, Kelly, who is 13 years old, was diagnosed with Aggressive Fibromatosis in August, 2012. This is a benign aggressive tumor that grows rapidly and takes over the surrounding tissue, muscles, and organs. This type of tumor is very rare and even though benign, is very aggressive and extremely difficult to get rid of. The tumor first appeared under her tongue in the floor of her mouth, and surgery was performed to partially remove it. It could only be partially removed due to the damage a complete removal would have done due to the infiltration of the tumor into the floor of her mouth. Three weeks following the last surgery on the floor of her mouth, another one grew in her mid and lower neck that was much more aggressive in nature, taking over the surrounding tissues and putting pressure onto the arteries and veins in her neck, and partially obstructing her airway. Due to the location, they could not remove all of it during surgery, and decided that the best option to treat Kelly’s condition at that time was chemotherapy. Kelly has undergone extensive chemotherapy treatments over the last seven months. In August, 2013, another tumor has appeared on her back, which has been diagnosed as the same type of tumor. The most recent tumor is very aggressive, growing very rapidly, stretching to over sixteen inches long is just one week. The tumor is pressing against her right lung and liver. Although Kelly has been experiencing breathing problems, the extent of the tumor’s connection to the lung and liver is unknown, and doctors started her on a new regimen of chemotherapy medications. Currently surgery is not an option for removal of the tumor in her back as well as one of the tumors in her neck. Doctors around the country have once again been consulted for help. Kelly began three new chemotherapy medications. One medication is a weekly treatment administered in clinic at Nemours, and the other two are administered as in inpatient every three weeks at Wolfson’s Children’s Hospital. The weekly medication has had adverse effects on Kelly, affecting her muscles and nerves. The longer she is on the medication the more side effects she has, which includes difficulty standing, walking, numbness and tingling in her limbs, and difficulty using her hands, as well as emotional effects. She is also on daily pain, nausea, and breathing medications at home. Kelly’s treatment is being handled by Nemours Children’s Clinic’s Oncology team along with Wolfson’s Children’s Hospital in Jacksonville, FL, which is about two hours from Brian and Christy’s home. Kelly’s prognosis is unknown at this time as doctors continue to work to reduce the size of the tumor against her lung and liver so that surgery can hopefully become an option. An MRI will be performed sometime this month to determine how well the tumor is responding to the chemotherapy medications.
The DePratter family always asks and greatly appreciates prayers for Kelly.