October 8, 2005 – May 5, 2015
Isabel Anderson is my daughter. From the beginning of life, she was exceptionally bright. Through school she proved that, receiving Principal Honor Roll as soon as real grades started after all the O’s in kindergarten and first grade. She was more than intelligent. She was fun, adventurous, brave, crafty, kind and encouraging and loving. She was healthy and an artist, author, green belt in martial arts and the Monday morning Flag Salute student for the school.
At 8 years old, 3rd grade, she complained of double vision. I thought she just needed glasses. We visited 2 optometrists, 1 ophthalmologist and then was ordered an MRI on her brain. Her 6th eye nerve was being pulled inward. It was getting worse. VCH gave Isabel her MRI on her brain and a week later, we were told the unimaginable. Met with a pediatric oncologist who gave us a diagnosis called DIPG. Diffuse Intrinsic Pontine Glioma. A tumor at the pons above the brainstem. An incurable inoperable malignant aggressive cancer. Dr said 4 months with no treatment and a year with treatment. VCH does not treat rare. We opted for UCSF but my friend told me about Stanford / LPCH.
After much prayer, God led us to Stanford. Isabel was atypical from the start. She started having weakness on the right foot that she dragged and her right arm became weak. The tumor needed a biopsy because she remained stable and they were not 100% it was DIPG. That was July 11th, 2014. It came up as Anaplastic Astrocytoma grade 3. This was a part of the DIPG family.
Radiation was ordered. 30 rounds that equaled 6 weeks. We stayed at the Ronald McDonald in Palo Alto. God met our needs, we did crafts and outings after treatment. She started steroids, chemo pills and a trial drug. She remained stable through MRI’s but symptoms persisted.
She tolerated the trial drug, did fantastic at radiation ( techs loved her!) and our oncology team was always in communication with us. Through the steroids, she gained over 30 pounds. The cancer symptoms caused her to fall a lot because walking signals were being blocked by the tumor. Her right side was weak so she switched to her left hand for writing. She still compensated for what wasn’t working. She went to P.T. , O.T., had orthotic braces for her right ankle, labs every week to make sure the drug wasn’t damaging her. Lots of treatments all the time and more P.T. with us at home. Still she wanted to go to school to 4th grade. We had to stay in class with her due to lack of programs. She loved it but was often a target for comments and was made fun of because of her cross eyed look.
After Christmas break, her walking had weakened, she needed a wheelchair and her speech that had slowly become slurry was really hard to understand. We started feeding her because eventually both sides were becoming weak. She needed help with everything now. The cancer was spreading, went on a new trial because it had progressed and this new chemo required a port. She would have 3 day stays at the hospital and this new chemo would give her the worst side effects. But it’s all we had for options. We knew Isabel was going to be healed here on earth or with Him in heaven. However, she was still declining. We would take her swimming and move her body for her and then she could do it. It was the only thing that helped keep her strong and she enjoyed it. Over the year after diagnosis, she lost her ability to move, talk, couldn’t smile, had problems swallowing , weakness in holding her head up, vomiting the saliva build up daily, and then breathing issues. All the while being aware of it all. Trapped in your body shutting down and your mind and thoughts are unable to communicate any of it.
Isabel was taken by Ambulance to VCH and almost coded when we got there. She had the breathing bi-pap machine on and lasted ten days until her kidney and lungs just couldn’t function anymore. All because the cancer spreads quickly to the vital parts of the brain that keeps these things in check. They were all infected and nerves were damaged in her brain. She wanted to live, the cancer took away the functions to do so. She passed May 3rd 2015. Her tumor was donated to Dr.Monje at Stanford hospital. We have seen the cells and it will become a cell line and then used for testing to find a cure. No child or family should ever have to go through this. I pray that one day there will be a cure and not a timeline.
Submitted by Isabel’s mother