Arwen is Resting

On February 18th, I will eat a scoop to remember Arwen because #kidsgetcancertoo. #DIPG #PNET #ETMR #Ependymoblastoma @eaticecreamday

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Arwen lit up the world for 3 years and 4 months. She was super smart, knew the alphabet and her numbers. She also talked early and loved being with her family, especially her twin sister, hiking around her home in Canada, camping, flowers, the color orange, butterflies. But like all three year old’s, she was sometimes a bossy pants and would let you know right away her eyes were hazel NOT brown.

She was a empathetic and caring human and was loved by so many! She loved puppies, babies, and her stuffed animals, especially her monkey and German shepherd.

When Arwen was only 2 years and 10 months old, her parents brought her to the ER. She had a CT scan and there was a mass in her brainstem. The next day, she flew with her family to Vancouver, and after an MRI, Diffuse intrinsic pontine glioma (DIPG)* was confirmed. DIPG is a brain tumor that is highly aggressive and difficult to treat. It occurs in an area of the brainstem (the lowest, stem-like part of the brain) called the pons, which controls many of the body’s most vital functions such as breathing, blood pressure, and heart rate.

Arwen started radiation/chemo/steroids for 6 weeks and then went home with her family for 4 weeks. and a follow up MRI showed that the tumor shrank. Her family was so elated, hopeful and happy! She stated matainence chemo and was doing well through to beginning of Aug. Then she woke up vomitting, with a headache.

A CT and MRI showed that her cancer had spread to her menengies, the three layers of membranes known as meninges protect the brain and spinal cord. And a follow up lumbar puncture showed the cancer had spread down her spine and her family was told that there was nothing to be done.

She passed away on September 2nd, 2014, six months after diagnosis at age 3yrs 4mo.

She has a twin sister who will be 11 this year, three older brothers (sadly one resting since Sept 2020) and a brother she never met. They all miss her desperately.

*Arwen’s autopsy report revealed cells more like PNET, ETMR, Ependymoblastoma. This was 2014 when they were on the cusp of changing the way they graded/diagnosed brain tumors.