In 2012, 11-year-old Jade Cain was diagnosed with a ruptured arteriovenous malformation (AVM), an abnormal cluster of veins and arteries in her brain. Treatment to cure the life-threatening bleed was successful, but it also caused radiation necrosis, the swelling and dying of brain tissue. As Jade’s condition devolved into extreme headaches, weight gain, and potentially other life-threatening complications, Tom L. Yao, M.D., neurosurgeon with Norton Neuroscience Institute, tried a groundbreaking treatment on Jade— a drug normally used for adults with cancer.
Thanks to the treatment, Jade recovered and is back to her usual self. She’s now raising money to support neurosciences at Norton Children’s Hospital. She recalls her journey and why she finds it so important to give back. This is her story:
I began having symptoms when I was 11 years old. Severe headaches that caused me to vomit, be sensitive to light and have a stiff neck. Doctors at my hospital in Paducah, Kentucky, did some testing and discovered blood around my brain. They quickly made a call to Norton Children’s Hospital, and I was picked up by the hospital’s “Just for Kids” Transport Team airplane.
I was admitted to the intensive care unit and underwent many more tests. Once the diagnosis was made, I was introduced to neurosurgeons Tom L. Yao, M.D., and Shervin R. Dashti, M.D., Ph.D., who became much more than just doctors to me.
I was diagnosed with a possibly life-threatening AVM, which required radiation. The treatment destroyed my AVM but it also caused a rare side effect — swelling and fluid around my brain.
The standard treatment for this type of adverse effect is steroids and vitamins. While high doses of steroids seemed to control my headaches temporarily, my symptoms persisted every time we tried to taper it off. I also suffered from severe side effects, gaining over 45 pounds, having mood swings and requiring many hospitalizations for fluid retention. I was both physically and emotionally a wreck.
Dr. Yao then presented my family with one more option. There was a drug, Avastin, approved for use in adults with cancer, not for AVMs, or for children. After a lot of discussion I decided to have the treatment — a single dose of Avastin directly into the affected part of my brain.
The impact was also immediate. My headaches improved, and I was able to go off the steroids. I lost a significant amount of weight and, more importantly, returned to my pre-AVM treatment personality again.
Over the past four years, with the support of my mom and her dancing friends with Dancin’ Divas, we have raised over $53,000 for Norton Children’s Hospital. All the money raised goes to the hospital’s neuroscience unit.
Why do I give back? It’s simple: they saved my life. If it hadn’t been for the hospital and the knowledge of Dr. Yao, who knows how life would be for me? Because of this choice, that treatment and the result, Norton Healthcare has made the treatment available to others as part of an international clinical trial.
Before the treatment I really struggled both mentally and emotionally. I want to give back so that others kids don’t have to endure the same.
As for Dr. Yao, I owe him everything. He always took the time to explain things to me on my level, from age 11 through age 15. He called and explained things to my mom after his clinic hours while he was at home with his family.
I would welcome you to join me in this great cause. You can get involved by donating to the Children’s Hospital Foundation.