Sophie Anne Peaster was born 10 days passed her due date via a healthy, non emergency, c section on June 27th 2011. She weighed exactly 7 pounds. She had jaundice for 24 hours but came out of it just in time to come home with Mom.
She grew and learned and never was behind. On Oct 27th 2014, we took her in to Valley Childrens. Prior to that she had been running into walls. Being more clumsy and for the last year she was very restless with her sleep. The week up to her diagnoses she was complaining of headaches in the morning. The day we took her in was the day she started getting Bells Palsy symptoms (facial droopage). She was also no longer ticklish, as if she didn’t feel a thing. Her knees started to buckle and she had to be carried quite a bit. Long story short, she was given 4-5 months to live. She was diagnosed with a Brainstem tumor called Diffuse Intrinsic Pontine Glioma (DIPG). It is inoperable because it’s like sand thrown in jello. Its wrapped around all of her vital nerves. It’s incurable because chemo to date has not been able to kill this type of tumor. Radiation is given as pallative care. With radiation she was given 8-12 months.
We immediatly got in contact with alternative medicine doctors, chinese medicine, homeopathic doctors, natural doctors. We started her on a clean diet right away. Fruits and Veggies. No sugar, no flours, no starch and no processed foods. No dairy, no meat. Clean eating. She did WONDERFUL on this diet. We also started her on 6mg of Dexamathsone (Steroids to help swelling) and Cannabis Oil (in hopes to kill the tumor).
We started radiation November 20, 2014. We went as a family. Her newborn baby sister, her 5 year old sister and mom and dad. We stayed in San Francisco up at Family House and had morning radiation treatments for the next 6 weeks at UCSF. She came home running out of Family House and ready to start playing again.
We had a good 2 weeks where life seemd to be a little normal. She had her monthly MRI to see how she took to radiation and the results were “stable.” Basically it didn’t grow but it also didn’t shrink. A month later we started seeing aggressive signs and scheduled an MRI and our hopes went down the drain. It was in fact growing again. It had basically grown at it’s peak. It had reached the top and was going to start spreading outwards now. Our life crumbled all over again.
We continued healthy eating as much as we could but if she wanted ice cream, she got it.
6 weeks before her last day was when she took her last bite of food (mashed potatoes and gravy).
8 days before her last day, she took her last drink of liquid (purple vitamin water, she had been on that since she stopped eating food)
6 days before her last day, she stopped all liquids and mouth sponges all together.
A week before her last day we quit Cannabis Oil. Not because it wasn’t doing anything. It kept her off of steroids for the most part but because she hated the taste and we could no longer put it in pills. She could no longer swallow.
She was on Methadone and Oxycodone the last week of her life. Pills rubbed onto her gums. Her pain was controlled. She was very comfortable. She laid in mommy and daddy’s bed her final days. SURROUNDED by people ALL DAY long. Singing, talking, meals. She was at peace.
She passed away at 7:15 am April 21, 2015.
She’s missed dearly and Grieved all day.
I hope to write a better version of her life with DIPG, but right now this is all I can rattle in my mind.
Submitted by Sophie’s mother, Theresa Peaster.