Our founder and north star.
Olivia was a typical 7 year old little girl. She loved unicorns, American Girls, and playing travel soccer. A few weeks before her 8th birthday she started to complain about shoulder pain. We attributed her discomfort from a fall from snow boarding but brought her to an orthopedist to get her checked out. The doctor's opinion was that it seemed to be a bad sprain and felt that it would heal in a week or two. However, the pain continued to increase and poor Liv would wake up screaming every night. After many sleepless nights along with multiple doctors visits, x-rays, and MRIs, we knew something wasn't right and it had to be more then a shoulder injury. Trusting our instincts, we took Liv to the emergency room at the Children's Hospital of Philadelphia. After several hours, the doctors thought it was a nerve issue and ordered an MRI. When the results came back we were pulled into a tiny room and told Olivia had a tumor in her spinal cord. In an instant, our lives changed forever. She was admitted and booked for surgery to try to remove as much of the tumor as possible. A few days after her 8th birthday our little girl was brought into surgery which lasted 14 hours. They were able to remove 40% of the tumor and we needed to wait for pathology for next steps.
On March 1st (Liv’s Dads birthday), we learned that she had a diffuse midline glioma with the H3 K27M mutation. Because of this mutation, the doctors upgraded to her cancer stage 4, and told us that she had an estimated 6-9 months to live. We were told to go home and make memories. Calling that our worse nightmare was an understatement.
After 6 weeks of radiation, we threw ourselves into research to find next steps. Olivia was enrolled in a clinical trial for a new medication called Onc201. That summer we thought that we had beat the odds, Liv was symptom free and having tons of fun in the sun! She continued to worry about other children dealing with cancer and was inspired to organize her own fundraiser. That summer she raised over $10,000 for pediatric cancer research. We even started the process of getting her back to school.
On the day before she was supposed to go back to school, after a few trips to the Emergency Room, we found out that the tumor had started to spread. After an emergency shunt surgery, we found out the tumor had spread even more and was all over her brain, spine, and in her spinal fluid. Olivia continued to decline and passed away on November 6th, 2019 at Hassenfield Children's Hospital in New York.
Olivia was our Unicorn, someone so magical and perfect it almost seems like she could not have been real. She taught everyone around her how to love so purely, with no pretense - just sweet all encompassing love. We would tell each other multiple times everyday how much we loved each other, I would follow up with, "I love you more." She would answer me with, "Not possible. I love you more than all the stars in the sky." Liv is now our own north star. Everyday we will live our life in tribute to her.
Cancer will never be what we remember about Liv. We will remember her selflessness while she fought an unimaginable battle. She never complained, and worried more about those around her, and the other kids who were fighting the same terrible disease.
Our mission in life is to make a difference in the horrible world of pediatric cancer.