Feb 19, 2016 Latest post:
Oct 22, 2016
Thank you for checking in on Carl and our family. We appreciate your support and words of hope and encouragement during this time when it matters most. Here's the (kind of) short version of how we got here:
On August 27 2014 in the early morning hours Carl had a tonic-clonic (grand mal) seizure. An MRI showed a suspicious mass, but the neurologist could not be sure if it was damage from the seizure or a tumor that caused the seizure, so Drs decided to do a follow up MRI IN 6 weeks. That MRI was unchanged from the previous and Carl was referred to UCSD neurosurgery for a brain biopsy. On November 13, 2014 he had a brain biopsy which resulted in the diagnosis of a brain tumor called a Low Grade Glioma (specifically, a Grade 2 Astrocytoma).
Carl was started on a low dose anticonvulsant following the first seizure and was asymptomatic until Christmas time when he began having focal (partial) seizures many times a day. He started more anticonvulsants, while we pursued a second opinion at UCLA. Both UCSD and UCLA agreed that a somewhat aggressive approach (for an LGG) was the best option, so Carl started 6 weeks of daily radiation and and a daily chemotherapy called Temodar in January 2015. He continued to work a modified schedule throughout the treatment, and besides some fatigue tolerated it really well.
He continued with 3 rounds of higher dose Temodar until June of 2015 when an MRI indicated that a more aggressive tumor had grown. On July 2 (Hyatt peeps--Carl likes to note that it was his first 4th of July off in 15 years!) Carl had a craniotomy to resect the tumor and received the devastating diagnosis of Glioblastoma (GBM), a highly aggressive form of brain cancer. Carl recovered remarkably well from the surgery, began a new chemotherapy 4 weeks after surgery, and we were vacationing in Tahoe by the beginning of August.
Unfortunately, to add insult to injury, Carl developed acute Appendicitis and had an Appendectomy in early September, which delayed his chemotherapy. An October MRI determined the tumor was still growing (didn't they take it out, you ask? Well, this type of tumor is difficult to completely remove as it grows "tentacle-like" branches that go undetected by scans and surgeons). Carl's neuro-oncologists suggested a clinical trial, which he enrolled in and received the trial drug in October and November, but a December MRI indicated the drug wasn't effective in controlling the tumor.