My wife, Susie Wilson, was diagnosed with brain cancer (Oligo-Astrocytoma) in January of 1999. Since the diagnosis, we have tried to keep notes that detail our journey and the resources we use. These notes include important information that we reference during doctor or hospital visits. If you have any questions about the below information, feel free to email us.
The below area is divided into five main sections (important, surgery, chemo, radiation…). These sections include links to text files or images that contain further detailed information. Some of the links are scans of Susie’s MRI films, Hospital log notes, doctor visit notes, and other information specific to that section/ treatment.
Below is a list of items, we carry with us at all doctor visits and trips away from home:
- Contact Information and Useful Numbers
- Drug Allergies, Information, and History
- Child Care Instructions (No Longer Needed)
- Questions when new tests are requested
- Questions when new treatment is recommended
Recurrence (2013 – Glioblastoma)
For fourteen years, we went to check-ups in Houston and London. We returned to the US in 2010. Susie had a series of events, specifically a loss of consciousness/ car accident in FEB-2012 and a grand mal seizure in SEP-2013. Fortunately, Susie went to the same hospital (Brackenridge) for both events. At the hospital, they detected an abnormality between her scans from 2012 and 2013. We went to MD Anderson to have the abnormality reviewed by Susie’s Neuro-Oncologist, Dr. Yung, and it was determined that she has a new tumor. Fortunately, her same Neuro-Surgeon was happy to do her surgery on 30-OCT-2013. On the 11th of November, we were informed that her tumor is more agressive than the original and is classified as a Grade 4 Glioblastoma.
Surgery (1999 – Anaplastic Oligoastrocytoma)
Susie was diagnosed with a brain tumor, in Austin, on the 11th of January 1999. She was transferred to MD Anderson Cancer Center (Houston). She had a craniotomy to remove the tumor on the 13th. Then on the 20th, we were informed that her tumor was a malignant/ cancerous brain tumor (Grade 3 Oligoastrocytoma).
After Surgery, we had to decide whether to continue treatment with conventional chemotherapy or with a clinical trial. From discussing the pros and cons of each treatment, we decided on the clinical trial.
- Clinical Trial – Temozolomide and BCNU
- Blood Test Results (with Dosage Modification Information)
- Doctor Visits
- MRI Scans
After Susie completed chemotherapy, we were off to her next form of treatment, radiation therapy. Due to the duration and the similarity of equipment, we decided on staying in Austin for radiation treatment.
Susie completed treatment (surgery, chemo, and radiation) in October 1999. At which point, she started 3 month check-ups at MD Anderson. After three years (without recurrnce), she graduated to checkups every 4 months. In 2004, Susie graduated to checkups every six months. With our relocation to the UK, Susie moved to yearly follow-ups at the Royal Marsden Cancer Hospital in London. Her neuro-oncologist at MD Anderson was kept informed while we were abroad.
Below is a collection of items that I used during research: