Our Inspiration: Juliana Neto Silva

Juliana “Julibug” Silva was born June 23, 2007, the firstborn of three wonderful children.

A few months after her third birthday, on October 7, 2010, Juliana was diagnosed with Acute Lymphoblastic Leukemia (ALL), a type of childhood cancer. Juliana was given a high probability of cure and within the first month of in-patient chemotherapy treatment, she achieved remission at the Children’s Hospital of Philadelphia. Standard treatment for ALL consists of chemotherapy-based treatment for two and half years for girls and three full years for boys. After intense chemotherapy for the approximately six months after diagnosis, Juliana remained in remission and continued standard maintenance chemotherapy consisting of monthly intrathecal (Spinal) & intravenous chemotherapy and daily medications.

On March 13, 2012, just days before her much anticipated trip to Walt Disney World, Juliana relapsed. Her treatment had changed and required more intense inpatient chemotherapy and an eventual bone marrow transplant.

Juliana once again, achieved a remission within the initial intense chemotherapy treatments and continuously endured heavy doses of chemotherapy to maintain cancer-free for her scheduled Bone Marrow Transplant. After full body total radiation and numerous doses of chemotherapy, Juliana received an unrelated allogeneic bone marrow transplant on July 25, 2012. She remained inpatient for approximately one month after the transplant, before being able to be discharged home. Thus, we began living a concealed lifestyle and constant use of facemasks and hand sanitizers. Julie engrafted and developed a graft-versus-host skin reaction indicating her new cells were well tolerated and her leukemia was still in remission. Nearly three months after Juliana’s successful bone marrow transplant, Julie relapsed with Leukemia on October 16, 2012. It was evident that the numerous chemotherapy and radiation treatments that she had received were not effective enough to eradicate the persistence of her illness.

On November 5, 2012, days after Super Storm Sandy hit the Jersey coastline affecting thousands including the Silva’s, Juliana started an experimental chemotherapy in attempts to decrease the leukemia burden in her blood. After multiple chemotherapies attacking Juliana’s immune system, her team of physicians at Children’s Hospital of Philadelphia concluded they could not offer any effective treatment available in the treatment market. On December 14, 2013, just hours after being discharged from Children’s Hospital of Philadelphia, Juliana and her parents set out to the referred National Cancer Institute seeking any available treatment options, including experimental and clinical trials, for Julie. An experimental trial on a high dose chemotherapy proved to be effective, but a persistence lung infection changed the course of Juliana’s treatment. From one day to the very next, Juliana was placed on a ventilator support for acute respiratory failure. In efforts to obtain the best and most effective care, Juliana was airlifted and transferred back to Children’s Hospital of Philadelphia, where she remained in intensive and critical care. She was placed onto high frequency ventilator support (oscillatory), sedation and paralytic medications, antibiotics, and countless cardiac medications. Juliana remained ventilated for eighteen days. These would be the last precious moments shared with her parents, sisters and family. After bravely fighting a lung infection, the burden of leukemia and failing organs proved to be too much for Juliana’s body to endure. In the loving arms of her parents, Juliana’s heart stopped beating and she took her last breath.

On the morning of January 21, 2013, Juliana earned her angel wings. During her courageous fight, Juliana lived happily, played earnestly and laughed joyfully. She always wanted to share her pure joy of life, her infectious laughter and her never-ending hope, faith and courage with those who knew her.

Inspired by our daughter and her endless endurance and desire to share awareness, we started the Precious Jules Childhood Cancer Foundation in November of 2013. Juliana showed us that children fighting cancer are brave, courageous and inspirational warriors who love and live for each day of their lives. She helped us realize that although she did not win her war against cancer, spreading awareness and dedication to finding a cure is vital. Julie inspired us with her strength and giving spirit to help other pediatric patients and their families. It is our mission to continue to share the hope, keep the faith, remember her courage, and spread awareness to ultimately lead to a cure.