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.