On July 24 our lives forever changed…We were celebrating mom's grandsons birthday when we noticed a slight facial droop. We thought she was having a stroke so we convinced her to go to the ER. She did not want to go because she was leaving for Indiana Dunes the next morning. We found out that night that the cause for her recent forgetfulness, headaches and slightly bizarre behavior was from a large Stage 4 Glioblastoma in the right temporal lobe. The next few days were a blur . She had a crainiotomy with tumor resection on the 26 th. We spent the next few days absorbing the terrible news that this cancer could take our mom/wife/grandma/sister in 12-15 months. She recovered well with some residual weakness and had to use a cane . She started the tough six weeks of daily chemo and radiation. Again being the strong woman we all know- she did well.
In November we went to Duke University in SC to see a doctor at the brain tumor center known to be cutting edge for this disease. They are doing trials that show promise with the polio virus. Mom’s gait had worsened after the six weeks and she was shuffling her steps. The doctor at Duke believed this was due to her hydrocephalus. They believed she needed a shunt and we would see improvement. We all received a little hope after this trip. Mom and dad then spent a few days at the beach and she again was doing good getting around with a cane or walker. When we returned home mom had a lumbar puncture at Siteman and the doctors didn’t think it was safe to do the shunt.
In December mom started her chemo again. She will do 6 rounds of chemo-5 days on,23 days off. She started the first round and 2 days after she was finished we experienced our first huge set back since surgery. She suddenly was unable to walk. We had an emergency MRI and were told by Siteman that they didn’t see anything on the MRI that would cause the sudden decline. They thought it could be the steroids she had been on since surgery that can cause leg weakness combined with chemo that causes weakness. We started to try to wean the steroids over the month of January without a lot of improvement . We have PT coming to the house 3x week and OT 2x week. They are working hard to get her stronger. A ramp was built by Jack, Jeff, Ryan and Wally from her deck so we could get her out of the house for appointments.
By the end of January we had another MRI due to an abnormality that they saw in the MRI from December and are hoping it is just post radiation changes and not tumor regrowth. We started the Optune helmet which is FDA approved devise to slow the cancer reproduction. She had to shave her head and has to wear electrodes on her scalp 18 hours a day. We are waiting results of this recent MRI. Please pray.