Day Thirteen: Wednesday, November 27, 2019

Continued from this previous article.

The prescription was finally filled and I returned to the hotel room where Kohen ingested the anti-nausea medication. The medicine worked. Kohen was now able to hold down his pain medication and because of that, his pain subsided.

Courtney and I decided at that point to try getting Kohen home, and not stay one more night in Utah (as we were contemplating due to his condition). Our new goal was to get half of the trip completed today, bedding down for the night in Elko, Nevada (four hours from Salt Lake City, four hours from home).

As we were preparing to leave, Kohen spent time on the phone speaking with all his siblings back home. It cheered him up, and it cheered up his mom and dad, too.

Around noon (11:00 AM Pacific) we carefully loaded Kohen in the car, with the help of the hotel’s wheelchair, and headed for Elko. The snow was falling again but the road conditions were still good.

Kohen fell fast asleep from the pain medications and Courtney sat in the back with him to tend to any of his needs.

About one hour outside Salt Lake City, Courtney received a frantic phone call from her mother who was currently at our house watching our other five children.

Apparently two of my kids got in a disagreement which ended in one of my sons, Calvin, swinging his ball cap at his big sister, hitting her in the hand. This normally would have not been too big of a deal, except Calvin’s hat was adorned with a large metal fishing hook. The hook went through my daughter’s finger, embedding itself so deep, the point began to protrude from another area of her finger. It was so bad, in fact, even the paramedics who responded could render no assistance in its removal.

Long story short, my sister-in-law rushed to our house to collect Samara and get her to the ER. (Yay! Another hospital bill.)

Meanwhile, Courtney and I decided to not stay the night in Elko, but to push through the full eight hours (seven remaining) to get home. I knew I could not safely do it, though. I was already having difficulty keeping my eyes open in the middle of the day, but Courtney said she could complete the drive if only she can get some coffee.

After grabbing gas, food, and coffee in Elko, Courtney was at the helm as we continued west. Kohen had awoken just long enough to eat some food and take some medicine before falling back to sleep.

After dark, we stopped in the little town of Lovelock and switched drivers again. Kohen continued sleeping as I drove the remainder of the way home.

We arrived at the house at 7:00 PM on Thanksgiving eve; so grateful to be home and to see how joyous all the kids were to be reunited with Kohen, all of them except Samara who had still not returned home from the hospital yet for her fishing hook injury.

Almost an hour later, Samara arrived home with her aunt. It was so nice to see our eldest daughter again, albeit temporarily with one less usable finger. (And yes, she and her brother reconciled their differences.)

Courtney and I also learned that in the three days we were gone, our vacuum quit working, a faucet in one of our bathrooms broke, and our oven no longer heats above 300 degrees.

When it rains it pours, but it was still nice to be home with the family, and watch my oldest son read to Kohen.

Day Fourteen: Thursday, November 28, 2019

Today was Thanksgiving. Due to the circumstances, we had not prepared for the holiday so we were going to scrounge together some Thanksgiving-like food from our kitchen, including some turkey breast from the freezer (it still counts as a Thanksgiving turkey, doesn’t it?). But Kohen was feeling much better today, so we asked him if he felt like going to his aunt and uncle’s for Thanksgiving. He said he was up to it, so to Aunt Stacie and Uncle JD’s house we went.

It was so nice to have a brief respite from the daily pressures, stresses, and worries that have been our constant companion for nearly two weeks, and it was nice for Kohen to have a diversion from the whirlwind of doctors, hospitals, and cancer tests.

This Thanksgiving, in spite of the terrible trial that has befallen us, we were thankful for the little things. Things like the fact that there’s still hope for Kohen; that we made it to Utah and back safely; that Kohen fasted all day at the hospital and yet somehow he was sustained; that Kohen slept the vast majority of the ride home from Utah (not even once needing to go potty); and that we had a warm and hospitable place in which to enjoy a home cooked Thanksgiving meal.

We are also thankful for the incredible outpouring of love that’s been shown to our little family in the form of well wishes, prayers, letters/cards of encouragement, and the generous donations. All of these things have helped sustain us and have come from co-workers, family, friends, and even complete strangers.

(I admit, I’ve wept repeatedly from the unmerited compassion for my little boy that’s been bestowed upon us from all over the country. There’s no way I could properly thank and repay everyone for what they’ve done for us these past thirteen days.)

We are also thankful to God for His tender mercies throughout this ordeal (even when we miss recognizing some of those mercies because the storm around us is so great).

And finally, I’m grateful that today–for the first time in nearly two weeks–I did not cry. Instead, I was afforded a brief respite from grief and got to cherish little things that two weeks ago I would have considered mundane, like the simple delight of watching Kohen enjoy a slice of pumpkin pie.

To be continued.

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.

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.

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.