Nelina Lyon Ann was born on Hallowe’en 2009 and was quickly nicknamed pumpkin shortly after her birth. She was your typical 4-year-old girl. She loved the outdoors, swimming, jumping in puddles and running through the sprinkler on a hot summer day. Her stuffy collection was her prized possession and her rock collection came a close second. She was a photographer in the making. She had a great sense of humor, a prankster nature and a love for life just wanting to try everything. Pizza and spaghetti were her favorite foods. Anything pink and purple were her delight. She lived life always wanting to participate. She was brave, passionate, strong-willed and just a whole lot of fun to be with. Never complaining through her illness and so much wanting to live life.
All that changed on July 25, 2014 when she was diagnosed with DIPG and quickly transported to SickKids ICU. Within hours, our lives were forever changed. All of a sudden, our daughter has a terminal diagnosis and only months left to live. It was all such a shock and heartbreaking to break the news to our family and firends.
Nelina began 30 sessions of radiation as our only palliative care option in order to give us some time to create a lifetime of memories with her. She had a significant improvement in her symptoms but endured numerous side effects from the radiation. She was able to enjoy 7 months of SR. kindergarten, trips, Make-A-Wish Disney trip, weekend adventures and family time before symptoms began to reappear.
We tried to get into numerous clinical trials around the world (nothing here in Canada) and were denied all nine times. We chose to do a 2nd round of radiation (12 treatments) in April 2015 and within a few weeks, she was able to walk again but her facial weakness never improved. Although we saw improvement, Nelina preferred the comfort of home and home is where we stayed for the next 10 months.
Strangely, shortly after her 2nd round of radiation, 3 masses appeared on her chest shunt line which brought concern to our Neurosurgeon. In July 2015, one of the chest tumors was removed and biopsied. It was diagnosed as a high grade astrocyma (basically, she has brain tumors growing on her chest) which the doctors had never seen before in all of their professional lives. From this biopsy, we were offered a chemotherapy treatment to slow down the progression which gave us renewed hope. We had 5 more months of time with our precious angel. She passed away peacefully on January 19th, 2016 with mommy and daddy by her side.
Nelina’s journey was one of hope.
Hope that she would be that miracle 5% that lived longer than 2 years.
Hope that the tumor would stop growing.
Hope that she would get into a clinical treatment that worked.
Our Hope changed when the disease progressed.
A lifetime of hope was changed to hoping for peace and comfort.
Her legacy will be one of hope – Nelina’s Hope.