By: Liz Scott, Alex's Mom
Today marks 17 years since I shared my last moments with my daughter Alex. It was a lifetime ago. Since then, our lives have marched on. So many small and large moments have come and gone and milestones have been reached. I have tried to live a good life that honors her through our work with the Foundation, of course, but also a life that honors something greater – the gift of having dreams and life goals and getting to reach them. I guess you would say living a full and purposeful life is itself a tribute to Alex, as it was something she fought for and worked for her entire life.
The lemonade stand she wanted to host to help other kids get better is a shining example of how she had a dream and worked hard to reach it. But Alex had other things she wanted to do too, some she achieved through pure grit, and some were left incomplete.
Alex was not yet a year old when she was diagnosed with neuroblastoma. That diagnosis would frame the rest of her life; but it would not stop her from dreaming and fighting for all the things she wanted.
Her first surgery — one to remove her tumor — began the day before her first birthday. Alex went into the operating room in the morning; 10 hours later, she was in the intensive care unit and her lower extremities were not responding to pain. We consented to another immediate surgery to remove more of the tumor, this time from her spinal cord.
Alex finally finished surgery at 2 am on her first birthday. We were told that even if she survived her cancer; she would never walk. She started the second year of her life paralyzed from the waist down.
Walking became one of Alex’s goals. Even as a toddler, she showed such strength and determination. She’d start crying when she saw her physical therapist coming to our front door. She’d scream through hard work of physical therapy on paralyzed legs, but she’d still stand as best she could.
Eventually, she’d walk—first with full braces and one step at a time; then gradually with smaller braces, and a walker. Every step she took on her paralyzed legs were steps towards what we were told was impossible: walking.
It took her four years of hard work. First, she worked up to walking without her walker and then she walked without braces. She still couldn’t feel her legs and her gait was unique at best, and unsteady at times, but she did it!
And that is how it was with Alex: the way she learned to walk exemplifies how she tackled her life, how she kept trying, even if something was hard or seemed impossible or uncertain. She applied that same persistence to her lemonade stand which resulted in her raising $1 million before she passed away. I can only imagine how she would have attacked her other goals in life had she been given the chance.
And there were a lot of things Alex wanted to do. She would talk about going away to college (and having a dog and cat as pets there), becoming both a fashion designer and an astronaut (but quickly decided that she might miss her kids too much if she went that far away). She had simpler childhood things she wanted to do as well – attend school more often, travel to interesting places and go to sleepovers. These were the things cancer stole from her, things left undone.
Yet her life was not one of regrets, but of looking forward, of taking those steps toward her hopes and dreams, of pushing forward despite enormous challenges. She didn’t give up on the idea that she could walk, or that her cancer could go away, or that she could cure cancer with a lemonade stand.
I am so very grateful that Alex didn’t give up on her dreams because she created a movement that allows us to all work together to cure kids with cancer, a movement that has helped other kids have the chance to live out their dreams.
Her example provided me with the inspiration to carry my life forward despite losing her, to take steps forward even when grief felt overwhelming, and to approach life the way she did, with determination and hope for our biggest dreams.
Thank you, Alex for all you taught me. I miss you and love you.
