Kevin and Christian from Above and Beyond Tree Services Celebrate a Significant One Year Anniversary
A lot has changed for us in the past year, as a business, as a family, and as human beings. It all started in one instant on Jan. 25, 2018, when we were told by an emergency room doctor that Kevin had a large mass in his brain – a brain tumor.
Hearing that someone you love has a brain tumor is more terrifying than it even sounds. The mere thought of it is unfathomable unless you actually have the unfortunate circumstance of going through it. And even now, a year later, it’s still hard for me to comprehend. There really are no words to adequately describe it other than to say in that instant the world stopped turning and life as we had always known it suddenly stopped existing.
I recognize now that that instant was actually the culmination of months of some quirky personalities changes, odd, uncharacteristic behaviors, and a host of seemingly unrelated symptoms that we couldn’t quite put our fingers on, and, up until that instant, doctors couldn’t figure out.
I first noticed the changes in the weeks after Hurricane Irma barreled past Jacksonville in September, 2017. Hurricane work can be a tree man’s dream come true, and his greatest nightmare all at the same time. To say we were exceedingly busy and overwhelmingly stressed in those weeks after the storm would be a gross understatement. Kevin and I worked 12 to 16-hour days, seven days a week, for seven weeks straight. We worked at job sites from the first ray of light at dawn, to the last speck of light at dusk, and then came home and worked on seemingly unending amounts of administrative paperwork. So, when during those intense weeks Kevin started acting what I referred to as “funny,” we both brushed it off as stress related.
Yes, he had headaches, and they did get worse as the weeks progressed, but he’d had headaches for much of his life, and headache medicine always taken them away, so the headaches weren’t a red flag for us. He was starting to gain weight too, despite no recent changes to his eating habits. He was working even longer than normal hours doing very physical work. It seemed odd, but wasn’t a red flag.
What was more concerning to me at the time was his increasing forgetfulness and confusion, symptoms so subtle that at first he didn’t even recognize them. He started asking me and the crew the same questions repeatedly, and couldn’t seem to keep the days of the week straight.
As the weeks dragged on, and turned into months after the storm past, instead of getting better, the symptoms persisted, got worse, and new symptoms popped up. Kevin seemed more tired, more forgetful, and more confused. In December 2017, right around Christmas, he also started to complain that he needed to go back to the eye doctor to have his eyeglass prescription adjusted because he was having trouble seeing on the edges of his field of vision. We were both getting more concerned, but he assured me that these symptoms were just because he was getting older.
Age related or not, we started getting things checked out. Despite having seen several different doctors in the first three weeks of January, 2018, on Jan. 24, when we went to bed, we still had no real answers. In the middle of the night, however, Kevin woke up and seemed more confused than ever.
I’m still not exactly sure what made me think to ask - under normal circumstances it seems like such a preposterous question - but in that instant, it seemed like the right thing to do. “Who am I?” I asked my husband of five years.
“I don’t know ma’am,” was his response.
My heart sunk, and in that instant I suddenly knew these symptoms that had haunted us for months were not a string of unrelated coincidences. They were not caused by stress. They were not because of his age. Something was very, very wrong.
I took Kevin to the ER at the hospital that was closest to our house. When we got to the triage area, and I started to explain the reason I was concerned, Kevin piped up, seemingly unfazed by what I was saying to the paramedics, and started speaking to them as if he were also a paramedic, and I was his patient. Now, it almost seems funny. At the time, I could not have been more shocked, worried, or afraid. The paramedics rushed us through the intake process, and rushed Kevin into an MRI.
It wasn’t until after many, many hours of tests, and waiting in the ER, that we were finally told the news that I could barely stand to hear.
In the hours, days, weeks, and months that followed, we learned just how serious, and dangerous his condition was that day I took him to the ER. We’ve also had to become amateur experts in the fields of brain tumor research and treatment, the endocrine system, and the healthcare insurance system.
Kevin was diagnosed with a papillary craniopharyngioma. Of the more than 120 different types of brain tumors known to exist, his is one of the more rare. It is slow growing and benign, but considered by some doctors difficult to treat and manage long term not only because of its location at the base of the brain near areas that are vital to basic human functions and life, but also because of its tendency to grow back, in some cases over and over, despite repeated surgeries and radiation treatment.
Although there is no way to tell for sure, doctors told us the tumor was probably there for years before the symptoms started affecting him. By the time Kevin was diagnosed, the tumor was 4 cm large, about the size of a walnut. A walnut might not seem that big, but when it’s crushing vital parts of your brain it is huge. Kevin’s, like many other papillary craniopharyngioma cases, was not detected until it became so large that it started effecting some of those vital areas.
By the time Kevin was treated, the tumor was pushing so hard in his optic nerve and chasm that it had robbed him of roughly 50 percent of his peripheral vision. By the time he went into surgery 10 days after the tumor was detected, he was dangerously close to entering a comatose state.
Kevin endured two surgeries, the first on Feb. 5, 2018 to remove the tumor and a second on Feb. 18 to repair a brain fluid leak at the surgical site that allowed massive, life threatening amounts of air into his brain.
He remained hospitalized for about a month, half of which was in the ICU. He suffered from a host of complications from both the tumor, which caused brain swelling and crushed his pituitary gland, and the surgeries, which left him weak and with searing headaches and dizziness that took many weeks to subside.
Despite all of that, we now consider ourselves exceedingly lucky. Kevin received his medical treatment at arguably one of the best medical institutions in the country, if not the world, The Mayo Clinic. Immediately after surgery he regained all of his peripheral vision. Despite the pressure the tumor had placed on parts of his brain, the only permanent damage was to his pituitary gland, and to a far lesser extent his hypothalamus, and even those, doctors have told us, have hope of regaining function. Perhaps most astonishingly to me, after just one month of intense in home physical and occupational therapy, Kevin was ready to go back to work. After his first surgery, his doctors told me that Kevin would likely never climb a tree again, and would need a full year to recover enough to return to any form of work, which would need to be a “desk job”. Although he had to start slowly, and had to pace himself, by the end of March we were starting to visit our crew on job sites. And in April I watched with equal amounts of pride and terror as he climbed his first tree post surgery, with the help of the crane.
Our journey during the past year has not been without many twists and turns, highs and lows. By May the headaches started coming back, and in June, after the first post surgery MRI scan, we were devastated to learn that part of the tumor was still there. In July we were told that the tumor was growing again, more quickly than before, and while only 2 cm large so far, was already dangerous enough that we had to have a consultation with doctors specializing in the fields of neuro-oncology, radiation oncology and neurosurgery.
Conventional treatment for this type of brain tumor, as with many other types of brain tumors, is surgery and radiation, both of which can be very dangerous due to the nature of the human brain being extremely sensitivity and incredibly fragile. There are very few drugs approved by the Federal Drug Administration to treat brain tumors, and, until very recently, the few that did exist have had limited success on treating brain tumors.
Despite the odds, we ultimately chose the less conventional route of treatment with a clinical trial that consisted of two oral chemotherapy therapy drugs for a host of reasons, not the least of which was because the early findings from these particular trial drugs have been remarkably successful for treating papillary craniopharyngiomas.
Since July we’ve had to travel every month to The Mayo Clinic in Rochester, Minn., where the trial is hosted, to receive treatment, and testing, and hope.
At 98 percent, the tumor shrunk more significantly in the first two months of the clinical trial than doctors had even hoped. During the third month of treatment we encountered another twist in the road when the tumor developed what doctors say seemed to be an inflammatory response to the treatment – growing cysts. But, by the fourth month of treatment the tumor shrunk significantly again.
As of January 2019, we are continuing with the clinical trial, and the tumor is still shrinking. It’s shrunk so significantly, in fact, that we likely will not have to seek any other forms of treatment after the trial is completed. But, it’s still unclear if the chemo drugs will be able to dissolve the tumor completely.
Regardless, Kevin will need to be monitored very closely short term and long term, returning to The Mayo Clinic in Rochester once every four months for the next five years for follow ups as part of the clinical trial protocol and receiving yearly MRI scans after that for the rest of his life.
The good thing about clinical trials is that patients have access to the newest, most cutting edge treatments and technologies available. Unfortunately, the bad thing about clinical trials is that while your results will ultimately establish the framework for future treatment, and possibly even cures, for other patients, there are no immediate answers and no guarantees for the patients taking part in them.
A major illness, we have found in the past year, has a profound impact on quite literally everything. Kevin’s illness has impacted every aspect of our life, as well as the lives of many of the people we love and interact with daily.
Because of our journey during the past year, we’ve had to reevaluate our priorities in life, and reinvent ourselves as small business owners. Brain tumors have the capacity to fundamentally change who you are as a human being. I’m exceedingly grateful that Kevin is still Kevin, despite the tumor, and perhaps in spite of the tumor. He is also infinitely stronger because of it.
We also both have a new, very deep appreciation for life, and all the obstacles and joys that make up every precious moment of our time here. So today we are celebrating, albeit humbly and with a great amount of reflection, that instant on Jan. 25, 2018 that changed our lives forever, and sent us on this journey.
Above and Beyond Tree Services, Inc
7260 Lennon St.
Jacksonville, FL 32254
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