Ella continues to be the backbone of our family. So much has transpired over the last six weeks, yet her spirit is unwavering.
Ella finished the radiation treatments about 4 weeks ago. The treatments gave her a "severe sunburn" on her back. It was very itchy and somewhat painful for few weeks. Swallowing was also very painful, so she was somewhat limited on what she could eat; however, amazingly no problems with dessert. She has an MRI scheduled for the second week in November, so we have to wait until then to determine how effective the radiation was, and the status of the original tumor. Unfortunately, since radiation can lower blood counts, she was not able to get any other type of treatment for the original tumor. She had to go off the clinical trial she started in August at NIH.
Within the past month she has lost her mobility and needs to travel by wheelchair, lost almost all use of her right arm and the ability to smile, she has some difficulty with swallowing and has had vision problems in her right eye. Yet, she tackles each day without complaint. The symptoms could be from the original tumor, swelling from irradiating the spinal tumor, lowering the steroid dosage or a combination of each.
She started a "chemo cocktail" last Friday. We have faith that it will be effective. So far she has tolerated it well, the only side effect has been fatigue. There is a 50% chance that she could lose her hair. She is also taking Avastin, which hopefully will help control any swelling.
Ella continues to go to school for most of the day. The teachers and staff at the school have been nothing short of amazing. They go far above and beyond all of our greatest expectations. Ella has really focused her time on homework and extra credit. I think she has finished most of third grade and has almost bankrupt her teacher's store (extra credit provides opportunities to shop the store).
Just like Orange County Choppers, we have heard that someone is creating a special custom wheelchair for Ella. We will be sure to post pictures once she gets it next week.
We can not thank you enough for your prayers. Please keep them coming... The Newmillers
