Christmas this year was especially sweet with a chance to make it to Idaho to be with family for the holiday.  The holiday was simultaneously sad. Over eight weeks after the MRI that turned our world upside down we finally had a diagnosis of grade 4 glioblastoma. This news did not help with our mental states. No brain tumors are good, but this is the bad one to which all signs were pointing. Up until the moment a definitive diagnosis was obtained we had held onto hope from the initial pathalogy report that this was a "grade 3 astrocytoma." The caveat of that report was that the tumor was "at least" a grade 3 with further refinement of the diagnosis hinging on the molecular testing that was still pending, i.e. trickling in from the biopsy tissue samples. The degree of devestation was already high when we got back news that we were in the worst case scenario. 

The "walks like a duck, talks like a duck so it must be..." school of medicine - it had shaken our hope that a lower grade tumor was what we had to fight; seeing the diagnosis of grade 4 eliminated that hope. With that said, it is a relief to finally have the diagnosis to steer the treatment plan and open up options for futher treatment after the standard of care therapy. Eleven weeks after that fateful MRI, Matt will finally begin treatments. 

The diagnosis took an inordinate amount of time to arrive because Matt’s original brain biopsies were small and nearing depletion which left gaps in the constellation of pathology and molecular results needed to give the cancer a definitive name. But let’s hope extraordinary amounts of time are a theme here, e.g., that Matt continues to fall on the long tails of the Gaussian curve of brain tumor timelines.


The diagnosis does not change Matt’s first stage of therapy, as all high-grade brain tumors are treated with standard-of-care maximal surgical resection and then chemotherapy along with radiation. However, without a definitive diagnosis further adjunctive therapies and clinical trials were likely off the table.  The larger resection, although far from total, yielded more tissue to substantiate the previous molecular and pathology results. Both sets of tissue ultimately gave the diagnosis of glioblastoma through multiple genetic detections, special staining, and other highly detailed tests, bringing together minute details of a complicated puzzle. The four-centimeter space now left from the debulking also allows room for brain swelling during radiation to allow Matt to handle that treatment better.

When you hear someone talk about a stage of cancer they are using nomenclature that applies to cancers that spread to other regions of the body (metastasize) which primary brain tumors do not do. Primary brain tumors are "happy" to stay within the brain. Instead of stage, brain tumors are given a grade (1-4) based on their aggressiveness.

Hi, doing surprisingly well here and walking around like nothing is wrong. I feel clear headed and strong. The initial pathology report came back on the tissue removed. Not good as expected (meaning they took part of a huge tumor out of my head and got a better look at it, nobody was expecting good news from that). There is still a lot of testing pending where they are just studying gene code mutations and looking for certain tiny biomarkers to help them understand what is going on and what to call it, but all that can really change is fine print in the treatment plan and statistics. Realistically, there isn’t anything pending that can come back and be good news. They just don’t know why some people are outliers and are able to fight this for years and why some can’t. We’ve just got to get better at riding these waves and roller coasters. I’ll probably be meeting with the radiation oncology team again later this week and will learn about when I start that process back up - really just waiting for healing from surgery before they can start hitting me with that stuff. After the treatments start, they monitor by doing continuous MRI scans and every one of those is going to just be a ride we have to get on. Might get off and puke. That team did leave us with the most comfortable drive home last time where we heard “this is what we do and what it will be like for you, we are good at it, and you will do great”. We changed neuro-oncologist and met the new one yesterday too. They all have the same standard of care and tools to use but we liked the way she could explain things better for us. The previous guy just wasn’t good at people skills and left us leaving there stressed out every appointment.

I’m ready to start treatments. I have $10k worth of chemo pills on the dresser and don’t feel like I need to wait but several doctors and my veterinarian all agree that I need to heal a few more days if not weeks. We are self-trained to get after things and try to solve problems.

In our continued efforts to make hay while the sun is shining, we packed all sorts of Holiday merriment into the past week. The boys and Kim had two “powder days” at Alta between Saturday, December 20 and Saturday, December 27. (According to the Utah Avalanche Center, “Boot-top powder is basically double-overhead when it's been raining to 10,000 feet.”) In between these days, we saw Charlie and the Chocolate Factory the musical in Orem at the new Hale Theater, made a trip to Salt Lake City, travelled to Hagerman, ID for festivities of the 24th and 25th with family, and Barrett took and passed his ham radio license test – an eventful week, for sure!

The trip to Salt Lake City was for Matt to undergo two advanced imaging studies to plan his long-awaited chemo/radiation treatment, now starting on January 8. These scans were previosly done back in November to plan for the treatments that were to start in early December. Debulking surgery changed the shape of the tumor so Matt had to start over on radiation planning. The simulation CT involves making a mask form fit to Matt's face that will later be used in the radiation machine to fix the position of his head while laying supine on the table in the machine.  The simulation CT was scheduled at 4 PM and the MRI at 8 PM at the Huntsman Cancer Institute in Salt Lake City, giving us several hours to kill downtown in between. So the boys came along after a few hours of skiing Alta in the morning. We went to dinner at Barrett’s favorite Italian restaurant and walked around downtown to immerse ourselves in the Christmas lights. On the way home, we stopped to walk through a neighborhood near Salt Lake City where the sycamore trees lining the street were all wrapped in white Christmas lights. We would not have done this Christmas outing had Matt’s brain tumor not brought us downtown. 

Christmas eve found us at an annual party of over 60 of Matt’s relatives on the Yore side, covering four generations. Matt enjoyed visiting with cousins, aunts, and uncles he hadn’t seen much in recent decades. Matt was once the littlest one in diapers at these parties; now there is a new pack of Tonka truck drivers. We even managed to attend a candlelight church service in Gooding before trotting back to the party in time to help clean up. Christmas morning the boys opened way too many presents and were thoroughly spoiled. Somehow despite warning the two of them that Christmas was going to be understated this year, we managed to haul enough merriment with us, and what we lacked our family filled in, resulting in quite the haul for the two of them. This being their last year as children, I suppose a little spoiling is okay one last time.

We had more fun on the way with friends from California, Matt’s college roommate Andy and his wife Melissa, visiting around the New Year and a few more days of snow in the forecast before the boys go back to school.

Once Matt starts chemo/radiation his treatments will be 5 days per week for just over 6 weeks, ending the day before his 50th birthday, by which time he might be a bit exhausted, or maybe not. We are told that radiation is a game of stamina. Matt is going in strong and seemingly healthy except for his permanent left visual field deficit. The chemotherapy is thankfully oral and just meant to help sensitize his tumor to the radiation.

Then, after a month of recovery, the plan is for Matt to go into the second phase of his treatment, the Keynote clinical trial, in which he will receive Optune, maintenance oral chemo (5 days on 23 days off), and an infusion of the trial drug Keytruda (or placebo, we will never know) every three weeks “until he is no longer receiving benefit from the therapy.” Keytruda is an immunotherapy that is approved already for other types of cancer, and in early phases of the trial patients like Matt with large, bulky tumors and only partial resections seem to do better than patients with total resections of their glioblastoma. The drug stimulates Matt’s immune system to attack the cancer cells, and it appears that having more to attack may confer a benefit. It is a small matter of time before Matt machines himself a holder for the battery pack of his Optune device, a wearable, portable medical device that uses alternating electric fields called Tumor Treating Fields (TTFields) to slow or stop the division of cancer cells and is FDA-approved to treat adults with glioblastoma, which he will wear 18 hours per day. It is these newer therapies that bring hope for an improved survival time. 

Matt is strong and optimistic as we go into the next phase of this misadventure. Getting a diagnosis and starting treatment took two to three times longer than it should have. But, if everything takes a long time from here, that’s okay for us. Cheers to the long tail!