Liberty Arnold-Simon
Born: August 22, 2010
Diagnosed: August 25, 2015
Died: December 20, 2015
– Whirling dervish – Creative – Athletic – Friendly – Funny –
Mama, Sara, remembers Liberty: “Liberty loved to swim, especially underwater. She was exceptional at it, but she had trouble listening to instruction from teachers. All she wanted to do was swim underwater, and so that’s what she did every lesson.”
Liberty was born on August 22, 2010 at 1:01 pm with eyes wide open. She was an incredibly active, athletic, creative, and artistic child with a great love for space, art, math, language, and rainbows as well as swimming underwater and her little sister Verity. We called her a “whirling dervish.” Liberty loved life more than anyone I’ve ever known. She was looking forward to starting kindergarten and Girl Scouts. When she grew up she wanted to be a lifeguard at our local pool before becoming a space midwife and having four children.
On August 19, 2015, Liberty choked on a pretzel. On the 20th, her eyes crossed. By her 5th birthday and birthday party 2 days later, she had problems walking and said it felt like her “legs were coming out from under her.” Liberty was taken to UMass Worcester on August 25th and over a period of the next two days was diagnosed with DIPG. She was instantly given a knee-jerk response of an extremely high dose of steroids which resulted in her needing Ativan and Klonopin to stop her from being aggressive. She spent a week there continuing to get worse before being allowed to go home.
We took Liberty to Boston Children’s Hospital / Dana Farber Cancer Institute where we signed up for a clinical trial that involved a biopsy. After several days in the hospital where she wasn’t allowed to eat, Liberty once again was allowed home. She would start receiving radiation as per the dose in the clinical trial with BCH/DFCI at UMass Worcester, closer to home in Clinton.
Unfortunately Liberty continued to get worse and within 2 weeks of diagnosis or sooner had completely stopped being able to walk, talk, or swallow. She continued losing her functionality until she was basically “locked-in” to herself, and mostly unable to move most of the time, while fully cognitively aware. Liberty communicated with us through one working eye that could only move up and down. There was the occasional improvement that allowed her to nod, squeeze hands, hold a paintbrush and move it slightly, etc but it was not consistent. Radiation did not work.
Meanwhile we were hitting every stop in hell on the way down. Within the first month Liberty got a shunt and a G-tube. We had endless problems with both. Liberty had conjunctivitis, a UTI, petechiae, and a laundry list of every symptom anyone can have in DIPG. Liberty didn’t have the usual emergence, honeymoon, and progression. None of it. As others have said, Liberty had the “worst of the worst of the worst DIPG.” Still she fought, and although doctors told us it was the “end of life” many times, Liberty never ever gave up.
Avastin was part of the clinical trial, but had a deleterious effect on Liberty. We also gave her medical grade, lab tested, whole plant THC and CBD oils. We also tried experimental drug gallium maltolate and got approved for oral Panobinostat but never gave it to Liberty. We also did palliative care with a local agency that provided art therapy and music therapy, and did additional complementary care of aqua therapy and acupressure.
Liberty died in the very early morning of December 20, 2015. We did not receive the full molecular analysis from Liberty’s biopsy until over a year. I’ve discovered in the 18 months since her diagnosis, since that Liberty had an extremely rare presentation of a not at all rare disease.
