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In late June 2018, Tom began to have health issues. It started with what we thought was a benign visit to the ER for orthostatic hypotension (dizziness/lightheadedness), but a week later we discovered that it was more severe. After losing consciousness followed by seizures, doctors at Emory St. Joseph’s discovered a lesion on the right side of his brain. After a spinal tap, brain biopsy, and and unexpected a rapid discharge, he was home for five days before another round of seizures sent him back to the hospital; this time at Emory University Hospital. During this second hospital visit, he spent 9 days in ICU and hooked up to an EEG to track the seizures. During one evening he had 6-8 seizures and after adding a third seizure medicine, they were able to get the seizures under control.
He spent until August 6 in the hospital recovering, especially while we tried to get insurance coverage of a transfer to a rehab center for extensive physicial and occupational therapy. He transferred to Budd Terrace at Wesley Woods rehab center and has been making good progress.
As of August 9, we met with a wonderful Emory oncologist who set forth a path. He described the tumor as snow on the field; the crops are still there and the tractor is still there — and they still work fine. You just have to remove the snow. What was helpful to learn is that while the tumor covers several areas in the brain, it is not thick. He described the sample from the biopsy as having “very little cancer.” He recommended seeing a Radiation Oncologist and only radiation as a treatment. The oncologist had a similar case in a young lady who exhibited the same type of seizures as Tom and it worked for her; it got rid of her tumor and the seizures. It was helpful to know that this type of tumor has been seen and treated before.
While the road is still ahead of us, we have a roadmap now, which in and of itself a relief. We’ll be updating his story here as things progress.
Here is a timeline:
• On June 28 he was in the Emergency Department due to dizziness and loss of consciousness; he was released from the ED after some cardiovascular testing that was negative. • On July 6, he has another round of dizziness that led to loss of consciousness as well as a grand mal seizure and related symptoms, along with additional seizures. He was admitted to the neuro unit at Emory St. Joseph’s at which he received a lumbar puncture and brain biopsy on July 12. • Less than 24 hours after his brain biopsy, on July 13, he was discharged from Emory St. Joseph’s to go home and do outpatient rehab; notably, healthcare providers recommended rehab, but Aetna denied it. • On July 18, he was found by Karen having had a serious seizure and unable to move his left side. He spent 9 days in the neurosciences ICU at Emory University Hospital. • During his ICU stay from July 18 to July 27, he had a total of 6-8 seizures in just one evening on July 20.
Thank you to all of you who followed our journey and prayed for us. I have taken the last two months to recover physically and emotionally from all of adventures we had from the end of June until the middle of January. I attend a grief group here at my retirement community.
The world around us is rapidly changing and I am finding it challenging to learn many new things on my own. I would appreciate your prayers.
Thanks to those of you who have called, sent texts, come by, sent cards and helped me financially and with errands. You have been a big encouragement to me.
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