Why I Walk | Kevin

Hearing that someone you love has a brain tumor is more terrifying than it even sounds.

My husband Kevin, who was, and still IS, a strong, proud, determined, and successful small business owner, was diagnosed with a rare tumor called a papillary craniopharyngioma on Jan. 25, 2018.

In the hours, days, weeks, months, and years that followed, we learned just how serious, and dangerous his condition was. We’ve had to become experts in the fields of brain tumor research and treatment, the endocrine system, and the healthcare insurance system. We’ve also had to make some really difficult decisions along the way, not only about his medical care, but also about the business and our life.

Kevin’s tumor is typically slow growing, but considered by many doctors to be 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.

When Kevin was diagnosed, the tumor was 4 cm large, about the size of a walnut. The tumor was pushing so hard on his optic nerve and chasm that it had robbed him of roughly 50 percent of his peripheral vision. On the morning of the surgery, 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, 2018 to repair a brain fluid leak at the surgical site that allowed massive, life threatening amounts of air to rush 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 nearly two months to subside.

Despite all of that, we now consider ourselves exceedingly lucky. Kevin has received his medical treatment at arguably one of the best medical institutions in the country, if not the world. Immediately after surgery he regained all of his peripheral vision. Despite the pressure the tumor placed on vital parts of his brain, the only permanent damage was to his pituitary gland, and to a far lesser extent his hypothalamus and optic nerve fibers.

My husband is a tree service owner and professional tree climber. After his first surgery, his doctors told me that Kevin would likely never climb a tree again. Kevin was determined to prove them wrong. After just one month of in home physical therapy, he was ready to go back to work.

He had to start slowly, and had to pace himself, but by the end of March, 2018 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 two-and-half years has not been without many twists and turns, highs and lows. By May, 2018 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 rapidly than before, and was already dangerous enough that we had to have a consultation with doctors specializing in the fields of neuro-oncology, radiation oncology and neurosurgery. We were told we had to make a decision quickly, as the tumor was already threatening to blind him, and possibly wreak even more havoc on his already battle-scarred brain.

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. 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.

We were given three options – more surgery, radiation, or a clinical trial. Despite the odds, we ultimately chose the less conventional route of a clinical trial that consists of two oral chemotherapy drugs for a host of reasons, not the least of which was because the early findings from these particular trial drugs were remarkably successful for treating this type of brain tumor. From July 2018 to August 2019 we traveled monthly from our home in Jacksonville, Fla. to the Mayo Clinic in Rochester, Minn. for the treatment. The stress of Kevin’s illness was only compounded by the toll constant traveling took on our business, our finances, and, in our darkest moments, even our marriage. When we first started traveling to Rochester we were shell shocked — it was still hard for both of us to fathom that Kevin even had a brain tumor. But it was incomprehensible to imagine our future with this thing that seemed to always lurk nearby and refused leave us alone. The headaches, the fatigue, the pills – they were constant reminders.

But at our first follow up visit in Rochester we received our brightest glimmer of hope since our journey began — the tumor, was in fact, shrinking. And at the next follow up, more hope with the news that it was continuing to shrink. And so it went for 12 months until the tumor was little more than a grainy speck on an MRI scan of what doctors hope is merely harmless scar tissue.

The effects of the chemo drugs on Kevin’s tumor seemed to be nothing short of a miracle. But chemo is an intensely sharp double-edged sword. The compounding side effects of the drugs month after month crippled his immune system, ravaged his digestive system, and forced him to live like a vampire, preferring darkness to daylight, lathering on 100 percent sunscreen multiple times a day and layering clothing to avoid exposing even an inch of skin that was extremely sensitive to even the briefest encounter with the unforgiving Florida sun.

Over the course of the 12 months of treatment in Rochester we came to think of Minnesota as our second home, and the amazing people — doctors, Mayo employees, volunteers and staff members at the Hope Lodge where we stayed — as our second family. Our last visit to Rochester in August, 2019 was bitter sweet.

As of August, 2020 my husband is now one year post-treatment. The tumor is in remission, and Kevin is officially, and unequivocally, a survivor. There are scars, both internally and externally, and there are life long health issues to contend with because of the tumor, but, we can finally look forward to a future, albeit cautiously and with a great deal with reflection, without the constant fears that once haunted us.

A major illness, we have found in the past two-and-half years, has a profound impact on quiet literally everything. Brain tumors have the capacity to fundamentally change who you are as a human being. I’m exceedingly grateful that Kevin is still Kevin, 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.

Why I Walk | Aubrey

Aubrey was diagnosed with a Juvenile Pilocytic Astrocytoma of the brain stem in 2005 at the age of three. She had brain surgery at Mayo Clinic, where they were able to remove about 50% of her tumor. From 2006 through 2014, she was on and off four different chemo therapies to slow the growth of her tumor. She had four more brain surgeries in 2015 and 2016, and her brain tumor has now been stable and dormant for about three and a half years. 

As a result of her surgeries, Aubrey is deaf in her left ear, has a paralyzed vocal cord, and some chronic nerve pain in her neck and shoulder from her incisions. She has had over 105 brain and spine MRI’s, many other related surgeries, and hundreds and hundreds of hours of physical therapy. That said, Aubrey attends Madison Technical College and will be a sophomore in the vet tech program there. She has her own apartment, nannies for a few families, drives her car, enjoys a very active social life, and is an all-around “normal” young lady. 

Unfortunately, this summer, Aubrey was diagnosed with three new cancers. She had surgery this month to remove an extremely rare sarcoma from her abdomen and pelvis, which included a complete hysterectomy and loss of her right kidney. Fortunately, the radical surgery was successful in removing all visible tumor, and she will now likely start immuno therapy to keep the sarcoma at bay.

Aubrey plans on being recovered enough to start back to her vet tech program on August 31. She will have to monitor both her brain tumor and these new cancers for the rest of her life, and is very thankful to have the amazing team that she does at Mayo. Aubrey regularly speaks at brain tumor research fund raisers, and participates in patient advocacy activities both in Rochester and the Twin Cities.

Why I Walk | vanKoeverdens

A few months after her third birthday, Ana was diagnosed with a Low Grade Pilocytic Astrocytoma, a slow-growing tumor in her brainstem.  She was a spunky little 3-year-old when this journey began, facing a battle that seemed far too big for her little body.  The tumor is in a place too delicate to remove, so Ana’s first treatment was a 15-month chemo regime. Two years later came another nine months of chemo, followed by six weeks of radiation. Then after four years of stable scans, the tumor grew again.  It has been stubbornly persistent since 2017, doubling in size since January of this year.  In late May, she had her second neuro-surgery.  She’s currently working diligently to regain her strength, doing neuro re-ed with physical therapy.  Then it’s back to the fight, rolling up her sleeves to start her 8th line of treatment.

Eleven years ago, we would have told you that it was impossible to be so smitten and enamored by an intense story with so much sadness and bad news that comes along with childhood cancer.  Yet our hearts couldn’t be more full right now.  We’ve learned more from pain than we ever could have from pleasure; the struggle has become an essential part of our story.  It’s the things we can’t change, that end up changing us…and here we are, being transformed again. We’re grateful for every single word, for every single line, for every single chapter of this story.  She is such a gift to us and to the world.

Organizations like Brains Together for a Cure are essential in promoting brain tumor awareness, bringing to light the dire need for more effective treatments.  The generosity of donors supporting this organization are essential for progress to continue.  The support received from a community facing similar battles is invaluable in a cancer survivors journey.

Why I Walk | Connor

In the fall of 2015, our 13 year old son Connor started getting headaches from being in the sun too long. He said it was too bright out. He then started getting severe morning headaches when he woke up in the morning. So severe that he would vomit. They would subside fairly quickly, but would happen a few times a week. So we took him to see his Mayo Clinic family doctor to get checked out. His blood work came back good…all tests showed no illness affecting him. But his headaches persisted. So knowing that Connor wore glasses when he was young to correct a lazy eye, we thought that maybe he was having vision problems that caused his headaches. So on Tuesday, November 24, Connor had an eye checkup at Mayo Clinic. While testing Connor, the chief resident noticed something and went and got the department head. He came in and checked Connor’s eyes. The two doctors excused themselves and went back into their offices. A while later they came back and said that Connor’s optic nerves were swollen which is caused by something putting pressure on them. So they scheduled an MRI for the next day. On Wednesday, November 25, Connor had an MRI at 8:15am. Afterwards, we went home and then to the grocery store to get food for Thanksgiving, which was the next day. While in the checkout lane, we got a call from Mayo Clinic. They told us to go to the ER immediately with Connor. They found something in the MRI scans. We then learned at the ER that Connor had an egg sized tumor of the in the back of his brain…medulloblastoma brain cancer. He was admitted right away to the PICU to be monitored. We spent Thanksgiving in the PICU. The day after Thanksgiving, Connor had a 6 hour brain surgery to remove as much of the tumor as possible. He came out of surgery in a zombie like state, which was normal for such a major brain surgery. He was able to walk and talk, so that was good. He also had a lumbar puncture to check for cancer cells in his spine. Fortunately, that test came back negative. 

After a month to recover, Connor then had a port surgically embedded in his chest on Christmas Eve. The port is used to make it easier for blood tests and chemo treatments…saving him from getting IVs placed in his arms every time.

In late December, Connor started proton beam radiation treatments at the Jacobson Building of Mayo Clinic every day, Monday through Friday, for 6 weeks. He also started chemo treatments then as well. On February 8th, 2016, Connor rang the bell to signify completion of radiation.

Connor spent the next year with a regimen of chemo treatments. He went bald a couple of times, was tutored at home for school, but never lost hope. He never complained once during all of his cancer journey. He just knew he had to do it to survive. On January 19, 2017, he had his final chemo treatment…a day to celebrate! In May 2017, our family was able to join Connor on his Make-A-Wish trip to Australia. He loves kangaroos and wanted to see them in their native land. It was an awesome trip that he so well deserved!

Connor has had quarterly MRI scans to check for cancer recurrence and has been NED (no evidence of disease) ever since. Connor has given back to those who have helped him in his cancer journey by being honorary chairs for the Olmsted County Relay for Life, The Brighter Tomorrows “Go For The Gold” event, the Hyundai “Hope on Wheels” initiative, and numerous “Cabin Fever” cancer events.

This May, Connor graduated high school in the top 8% of his class (#35 of 409 students)…a great accomplishment. He did his senior year of high school in the Post Secondary Program at Rochester Community and Technical College (RCTC) earning college credits as well. He plans on attending RCTC again next fall (Health Sciences field). He still wants to give back to those who helped him during his cancer journey.

Why I Walk | Kelly

GBM: These three letters have taken a lot from me. My beloved occupation, hints of independence, occasional confidence, a sense of security,  beautiful bike rides, a hobby of crafting, the ability to lift a glass (Solo or otherwise) or feel my sweet husband holding my left hand. GBM does not let me wear earrings, clasp a necklace, put in contacts, style my hair, type with two hands, tie a shoe or open a ziplock.

Over time, I’ve become a master at allowing myself a simple word with profound meaning: Grace. I am mindful as I patiently learn to navigate life differently than before. I pump the breaks when I sense myself growing irritated at the basket of laundry before me that now takes 3x longer to fold than days gone by. Instead I’ll find joy and accomplishment tucking away each imperfectly folded (or unfolded) piece.

October marks (24) months post diagnosis. To say ‘it feels like we’ve lived a lifetime’ since being diagnosed is putting it mildly. There’s rolling coaster of life at Cavallo Pass, the intrusion of COVID and a world that seems to be crumbling. Through it all, I’ve managed to place another feather in my cap: that of living on borrowed time. Remaining on close watch MRIs (every eight weeks), you’ll never hear a sigh of relief or catch me getting overly comfortable. Do I live with mindfulness and caution? Of course. In fear? I refuse. I have been blessed with a saint of a husband, but most importantly, that saint is patient.

What these three small letters have given me are far more than what they have taken. They have given me strength, courage, optimism, hope and fight. Oh, they most definitely have given me fight. These letters have taught me persistence and ways to tirelessly work to find a way around many day to day annoyances:  twisting a door knob, flipping a switch (literally, not figuratively), removing a twist tie from a fresh loaf of bread, learning to sweep the floor one handed (with angular use of a right side) and remembering why it’s always good not to carry too many things at once or the screen on my iPhone will most certainly crack. These three letters have taught me to be innovative. Yes, even a blonde can be innovative.

These letters have renewed my belief in miracles (huge, medium and small), the power of connections, the goodness of mankind and made me grateful every day for the fact I am right handed. They remind me not to be quick to judge a book by its cover. Not only are just a handful of illnesses/disabilities physical in nature, they are a cross the beholder seldom knows how to bear. These letters have taught me determination. It’s okay to be cautious and hesitant in my steps. I have experienced falls, and really would rather not display another one. Its okay to take the time to search high and low for a one handed craft. Turns out I am addicted to it! Crank up the 80s/country tunes and I can (and do) sit in one spot for hours just dotting away. I was able to thank friend Debbie for introducing me to my new favorite hobby: Diamond Dotz. I am blessed to have a very crafty 9-year old niece who explains things far better than any YouTube video could, have a husband who creates beautiful frames and have an opportunity to surprise friends/family with one of the best gifts of all: a ‘just because’ gift.

It’s okay that my treadmill speed is at a slightly slower pace than pre-brain tumor and my duration is not what it once was. I’m getting there. It’s also okay that my walking stride is not as graceful as before and that handrail use is preferred. I’m just thrilled to be back in a COVID free basement gym, on the treadmill and proudly earning a smiley sticker for every day that steps are logged.  Life is good. Didn’t ever really imagine getting to this mind space, but there’s no doubt these three letters have given me far more than they have taken. 💕