Week Two: Facing The Elephant in the Room

Day Twelve: Tuesday, November 26, 2019

We were told that our 9:00 AM appointment was pushed back. We now had to be at the hospital by 11:00 AM.

We arrived at the hospital at 10:30 AM to a heartbreaking scene. Kids, of all ages, and in various stages of suffering from cancer, were everywhere. I wasn’t expecting to see that, even though we were at a children’s cancer hospital. I just hadn’t mentally prepared myself for what I would see.

It’s hard to imagine anything more sobering–more saddening–than walking through a children’s hospital, seeing all the suffering those children and their parents are going through. A heartbreaking story is behind every kid in a wheelchair, every kid hooked up to tubes, and every kid trying to conceal their bald head with a knit cap.

It’s the great elephant in the room.

I always knew these kids existed, but it was always someone else’s kid. It was never mine. I always saw these children on TV, in ads, in social media feeds, but like most people, I just walked by, turning a blind eye, justifying my indifference under a veneer of feeling grateful that I have been spared such a life (but how quickly our idyllic lives can change).

Here, together, as we walk through the halls of this hospital, we are surrounded by so many other families, going through what we are just now discovering. They are strangers but we all share a common thread, a debilitatingly burden in which we all have to endure watching our children suffer. And each one of us is hoping that it’s our child that pulls through in the end; not becoming just another statistic.

It’s barely been a week, yet facing this type of trial changes you.

Walking through the halls of a children’s cancer hospital, changes you. 

Your outlook and perspective on life drastically changes.

In spite of trying to cling to anything that provides a sense of relative familiarity and normalcy, the reality is that the trivial things that once held great significance in our lives, now means very little. And those important things that we used to take for granted, we now cherish beyond comprehension.

To be continued.

Week Two: Road Trip

Day Nine: Saturday, November 23, 2019

Woke up neutral again. I’m feeling emotionally spent; numb. As the day progressed I began to feel a little better. I stayed busy at work, keeping my mind on other things. I even felt pretty good in the evening and am grateful for the moments of respite from grief and sadness, even though I still haven’t made it through a whole day without crying yet.

Day Ten: Sunday, November 24, 2019

Woke up in good spirits, still hoping and praying for a miracle, but still mentally preparing for whatever God’s will is in this situation.

Church was tough to get through today. His mom and dad shed many tears. Kohen was prayed for and prayed over.

It’s so difficult to talk to people about what is happening to Kohen without losing it . . . so very difficult.

Day Eleven: Monday, November 25, 2019

Today is the day of the big road trip to Salt Lake City, as a big snowstorm moves into the northern Nevada and northern Utah regions.

Kohen got a little car sick a few times, but aside from that, the trip was rather uneventful. We only encountered light snow during the drive; nothing too precarious.

When we arrived in Salt Lake City the snow began coming down in bigger flakes. It was a moment of beauty contrasted against the ugly that we are now living with.

After a stop at Whole Foods to eat and get Kohen some food for the next couple days, we drove to our hotel room and retired for the night. We were pooped and tuckered from the day’s seven hour drive. Tomorrow we find out if the tumor is benign or malignant.

To be continued.

Week One: Part Three

Day Seven: Thursday, November 21, 2019

My wife stayed up late the night before, researching our son’s cancer. This morning she told me that because of the lack of other symptoms associated with Kohen’s condition (e.g. fever, lethargy, general illness, etc.) she believes the tumor in Kohen’s leg may actually be benign. We are holding out hope that this is the case, and that very hope helped to contribute to today being a good today. I didn’t even break down all day. But then came the evening.

In the evening Courtney talked to Kohen’s oncologist which brought us back down to reality. Afterward, the cloud of grief retuned over my head, and that dark cloud returned with a vengeance.

I began feeling intense anxiety and got sick to my stomach. What started out as a great day turned miserable. So many different roads we have to decide between, all with lifelong ramifications. And “lifelong” may not even end up being that long after all for our little Kohen.

We are having to make so many life and death decisions for our son, all the while snared in the suffocating grip of the tendrils of grief.

Day Eight: Friday, November 22, 2019

Today makes one week since our world was turned upside down. Seems like a month ago.

I woke up feeling neutral; not good, not bad, just neutral. 

Later in the afternoon we got word that we’ve been scheduled for a 9AM biopsy appointment next week in Salt Lake City, Utah. We will then know for sure if the tumor is benign or malignant. This whole ordeal feels like a runaway train, and I just want to get off.

To be continued.

Week One: Part Two

Day Two: Saturday, November 16, 2019

Courtney and I were both awake by four in the morning. The realization that the previous day’s news was not a dream smothered us.

My wife went and retrieved Kohen from his bed and brought him into ours. We embraced him, held him, and caressed him as he slept.

My wife and I wept in the dark.

Day Three: Sunday, November 17, 2019

Kohen has been on a juice diet the past couple days. All the organic fruits and vegetables that contain antioxidants and other cancer fighting properties are now part of his strict diet. He’s not a big fan of it, but he understands why we’re doing it and he’s accepted it like a trooper.

As the sun sets, the longest weekend of our lives has come to an end. We now prepare with trepidation and fear for what tomorrow and the rest of the week will reveal.

Day Four: Monday, November 18, 2019

The pediatric doctor has reviewed the Urgent Care x-ray. His opinion is that the x-ray reveals an aggressive tumor and that an MRI, biopsy, and surgery will all be required. The MRI was promptly scheduled for tomorrow morning. 

Kohen’s tolerance for a fruit and vegetable juice diet is waning. I can’t blame the little fella.

Day Five: Tuesday, November 19, 2019

At 6:45 AM we arrived at the hospital in Reno for Kohen’s MRI. 

At 11:00 AM we met with the pediatric oncologist who, after reviewing all the reports, believes Kohen has a cancer known as Ewing Sarcoma.

Five days into this ordeal, and we’re beginning to come to terms with what we’re facing, and accepting that it doesn’t matter why this is happening to us, because it is not ours to ask.

We now have to change our attitude. The time for grieving needs to pass and the time for fighting needs to begin. We can still allow ourselves moments to mourn for our son’s situation, but it should not be our defining factor any more. We are now on a mission to beat this, so we must mobilize for battle.

Day Six: Wednesday, November 20, 2019

Yesterday’s positive attitude and determination to change my focus from grief to fighting has drowned in a sea of tears. The sobering weight of our son’s situation has returned like a dark cloud. I have to concede, my change in attitude was premature. I am clearly not ready or prepared to mobilize for battle yet.

I am desperately seeking out moments of distraction and normalcy throughout the day, and although we have been receiving a lot of support from family and friends, I dread when the days turn into months, and that support begins to fade.

It seems like fear has become my constant companion now.

Watching Kohen’s big brother, Elijah, offering some of his own money to encourage Kohen to drink his veggie juice is so precious, and at the same time, so sad.

I’ve cried every day for the past week, and today was my first day back to work since receiving the dreadful news. I made it a total of 15 minutes at work before breaking down in tears. The weight that had lifted from my shoulders the day before was clearly just a momentary reprieve.

I went home for lunch today to visit with my family and talk with Courtney. Among the topics of discussion with my wife was whether or not we will need to amputate my five-year-old son’s leg. A conversation I couldn’t have imagined having just one week earlier.

Finally, today marks the one year anniversary that I published an essay on Medium entitled Have You Hugged Your Kids Today? I wrote it on November 20, 2018, and little did I know then how poignant and apropos it would be a year later. That essay holds much greater significance for me now than I had ever imagined it would when I wrote it.

You can read the brief essay here.

To be continued.

Kohen Gabriel: The Unfathomable Journey Begins

Kohen Gabriel, our smart, funny, five-year-old boy likes tigers and strategy board games. He is inquisitive, witty, and brave. He is also the youngest of our six children, and being the baby of the family, he is the object of everyone’s affection.

Kohen and mommy (circa November 2018) one year before we found out he had cancer.

In August of 2019, we noticed Kohen began favoring his left leg when he walked, occasionally complaining that it hurt. But being an active farm boy who played outside all the time with his big brothers, we figured it was a minor injury that would heal. We even speculated it was simply growing pains.

His discomfort came and went over the next three months, during which time he still roughhoused, wrestled, played football, and even competed in a bike race at the county fair.

Then one evening in early November, I was playing with him in the den when I picked him up by his legs. He complained that his left leg hurt and that’s when I knew something was wrong: his leg still hurt after all these months and how I lifted him should not have caused him any pain. It was then that I asked my wife to make an appointment to get him into the doctor.

The results of that doctor visit would change our lives forever, and is the very reason why this blog exists.

Continued here.