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Emily’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated about our loved one. Get started by reading the introduction to our website, My Story.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.

Emily has been suffering from severe headaches. In April, Emily had MRIs performed that revealed some abnormalities in her brain that were restricting the flow of spinal fluid and had been the cause of the fluid pressure building up.
 

Phase 1 –

During April, Emily has spent all by a few days at Columbia Presbyterian Hospital. Emily has had three different brain surgeries to relieve the pressure to her brain (hydrocephalus). In addition, biopsies were taken during the first surgery.

For the most recent surgery, Dr McKhann and Dr Anderson were able to successfully preform an Endoscopic Third Ventriculostomy (ETV) to help the fluid drain.

 

Phase 2 –

Emily’s brain tumor is a Gliomatosis, a very rare primary brain tumor. She has most likely had it for years.

Due to it's rare location and composition, removal is not an option. It is a low-grade tumor and she has time to learn about different treatment options and make decisions without rushing. 

Emily is currently focused on recovering from her surgeries in the last few weeks and has not made plans to see Drs yet but will do so over the next few weeks. Emily’s Dr’s have said they have never seen a tumor like hers, so we know that we have a unique path and journey ahead of us.

Latest Journal Update

NBTS Annual Meeting

Dear Friends and Family,

On October 1, 2014, Emily will be recognized with the Community Leadership Award for Awareness by the National Brain Tumor Society at their 2014 Annual Meeting (http://www.braintumor.org/about-us/summit/).  Alice and I are honored to be able to attend the Annual Meeting and accept her award. As you know Emily made a difference in all of our lives with her commitment to raising funds and awareness in support of brain tumor research. Without your personal, financial, physical, and emotional support, her efforts would not have been as successful as they were. Robert, Alice and I thank you for your previous contributions and for your participation as a member of Team Sweet Emily. We hope you will be a part of our future fund raising and awareness efforts.

Love,

Mack, Alice, and Robert