Penelope Rai passed away on January 6, 2019, after a long and courageous almost three year journey with Stage 4 Hgh-Risk Neuroblastoma.
Diagnosed on February 16, 2016, Penelope began the rigorous treatments to help cure her disease even with only a 50% survival rate from the beginning.
On September 7, 2016 the day after receiving high-dose chemotherapy and a bone marrow transplant, Penelope developed severe septic shock and we were told Penelope was not going to survive. Dr Ted Gerstle performed a dangerous emergency surgery and removed her entire large intestine which had become perforated. Surgery was successful and the ICU team at Sick Kids, led by Dr. Gail Annich, performed more miracles healing Penelope and bringing her back to life. After one month in the ICU Penelope was recovered to then spend another two months on the ward to complete her healing.
With the disease still present in her bones after the bone marrow transplant she began antibody treatment for the next year under the care of her oncologist Dr. Daniel Morgenstern
Penelope was clear finally in her body but on January 15, 2018 it was discovered that the disease had spread to Penelope’s brain. 17 lesions throughout. With no treatment options left for Penelope at Sick Kids, Penelope began treatment at Memorial Sloan Kettering in New York for life saving therapy. The treatments at Memoral Sloan were able to stabilize her disease until December 29, 2018 when they found her brain lesions had all grown and there was significant edema.
Penelope began radiation treatments to her brain at Sick Kids Hospital, but one week later there were numerous brain hemorrhages and she passed away.
This page is to honour Penelope’s memory. The funds collected by Sick Kids Foundation will go directly to Neuroblastoma Research, led by her doctor, Dr Daniel Morgenstern. These funds will help fund more research, to fund bringing more trials and treatment options to Sick Kids and to ultimately help find a cure for Neuroblastoma.