This is Sullivan.
by Jen Butler, Hero Mom
My son Sullivan is a smart, kind, and strong 5th grader.
Until November 2016, Sullivan's health was fine. Then, he was diagnosed with brain and spine cancer. As a parent, it was one of my biggest fears come true.
Sullivan bravely underwent multiple surgeries to partially remove the main tumor and release the pressure on his brain. Sullivan's tumor removal surgery resulted in Posterior Fossa Syndrome which affected his vision, speech and ability to walk. After months of excruciating radiation and high dose chemotherapy treatments, Sullivan's doctors could see no evidence of disease (NED). At the end of each phase of treatment, my husband Dan and I just hoped and prayed it worked. I remember the very odd feeling of relief that it was over, but at the same time, the anguish over wondering was it enough?
Today, Sullivan continues the long process of rehabilitation and adaptation to his new life as a cancer survivor. He has physical therapy three times per week to help regain his strength and balance. He has made miraculous strides in physical therapy, but the effects of the treatments are extremely damaging.
Sullivan has worked back up to being in school full time and has caught up, but due to the devastating effects of radiation and chemo, some accommodations have to be made to help him deal with challenges that he never struggled with before. Sullivan's short-term memory and mental focus are not what they were before cancer, but we had no choice, to save Sullivan’s life those treatments with all those side effects were necessary.
Sullivan is our son. We will always fight for his life.
In March, our family is joining ALSF for the inaugural Lemon Climb Houston and climbing the stairs to the top of Chase Tower, the tallest building in Texas. We will climb and we will fight so that our son and children just like him get the cures they need to survive and thrive.
There is no history of childhood cancer in our family. The causes for most pediatric cancers are not understood. It happened to Sullivan. It can happen to anyone.
Kids' cancers are different from adult cancers and childhood cancer research is extremely underfunded. Over 90% of pediatric cancer survivors live with lifelong health effects caused by treatments. Together, we can do something about it by raising money for cures that are more effective and less harmful.
Will you make a donation? Every dollar makes a difference for the thousands of infants, children, teens and young adults fighting childhood cancers.
When asked why pediatric cancer research is important, Sullivan said, “Cancer can take lives and can be very harmful to people. Research can find better cures for cancer that don’t involve so many meds that make you feel bad.”
Jen and Dan Butler are the parents to Sullivan, Cashel and Finn. The Butlers first discovered ALSF through resources given to them by Texas Children’s Hospital. The Butlers benefited from support provided by the ALSF Travel for Care program and are excited to help more families going through similar experiences. They will join family and friends for the inaugural ALSF Lemon Climb on March 24. You can join them, too! Registration and climb details are here.