Posted on January 11, 2018
Posted on January 11, 2018John ran out of time on Saturday, January 6th with me, his mom and dad and friends by his side. It was exactly two years to the day of his diagnosis. He asked me permission to leave, and left when he felt comfortable before ever really losing all of who he was.
He wanted me with him at all times, still had moments of being sarcastic and rolling his eyes, and always had a sense of humor. I’m lost without him but I promised him to live for both of us.
As we continue to receive donations, we’ll use them for his final expenses and for getting settled and then donate any extra to Lungevity.
Posted on November 29, 2017
Posted on November 29, 2017Hello from Boston! After 14 months on his first treatment, John spent almost six months on Tagrisso, another pill to fight his gene mutation. The next step, chemo, didn’t work. Dr. Sequist at Mass General is concentrating on getting John stronger. He’s been dealing with random nausea and vomiting for weeks. We will now be spending some time here for her to run some additional tests. He’ll be getting a new biopsy to see if his cancer has gained another mutation and can get into a clinical trial. If not, there’s a chemo he can consider trying.
John has to gain some strength before any real treatment or trial can be considered. We will probably be in Boston for the rest of the week but it’s day by day. I’m on unpaid FMLA leave right now and John was laid off after his job merged last month. The new company banned narcotic usage regardless of prescriptions, so they severed him. We’re living on savings right now and just trying to save John’s life.
Posted on February 4, 2016
Posted on February 4, 2016John's oncologist, Dr. Pennell, called last night to tell us John's cancer contains the EGFR mutation. Normally when you hear gene mutation, it's not good news. However in the cancer world, this is amazing! EGFR stands for Epidermal Growth Factor Receptor. It's one of the two most common gene mutations in non-small cell lung cancer but is found in less than 15% of patients. His specific mutation has a marker that typically means it's more receptive to medications. Dr. Pennell said this was the best possible outcome. The doctor is ordering a medication called Gilotrif (afatinib-seriously where do they come up with these names?). He'll start it as soon as it arrives; hopefully sometime next week. We just have to see if insurance will help cover it. If not it could be $5,500 a month. Yikes. It's just one pill a day with minimal (hopefully) side effects. This medication stops the signals from the gene that are needed by the cancer to grow and develop. He could see improvement in as little as a couple days. We'll go up to the Clinic in three weeks after starting for blood work to make sure it's working. Then he'll get full scans in two months to see how the cancer is responding. Eventually his cancer will find a way to work around the medication, but there are lots of options if/when we get to that point. Fingers crossed for a complete and lasting response on this medication. We're ecstatic!