October 31, 2009 – January 19, 2016
Nelina was born on Halloween 2009 and 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. All that changed on July 25, 2014 when she was diagnosed with DIPG. She required immediate shunt surgery to relieve the pressure in her brain and was 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 call all of our family to break the news.
A few days later, 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 chose to do a 2nd round of radiation to give us a bit more time but there was no guarantee that it would work. Nelina had an additional 12 sessions of radiation in April 2015. Within a few weeks, she was able to walk again but her facial weakness never improved. We were disappointed when we realized that we could not go out as we used to, as Nelina preferred the comfort of home.
In July 2015, the cancer had spread down her shunt line and it was diagnosed as a high grade astrocytoma (basically, she has brain tumors growing on her chest). The positive aspect to this strange turn of events is that the doctors were able to offer a chemotherapy treatment to treat the chest tumors and to give us renewed hope that it could help the DIPG tumor. Nelina has now had 4 rounds of chemotherapy and her symptoms have slowed down.
We know that her time is limited but we still hope that Nelina can find happiness in everything that life has to offer.
Nelina passed away Peacefully, on January 19, 2016 after a 17-month battle with DIPG Cancer. Source: The Legacy
Submitted by Nelina’s parents