Numb

I don’t know when it happened. Sometime between the one-month and two-month mark of finding out Kohen has cancer, I went numb. Emotionally and spiritually numb.

Perhaps it’s from juggling responsibilities at work and caring for our five children at home while Courtney is at the hospital with Kohen . . . perhaps it’s from being all cried out . . . perhaps it’s both.

Or maybe, it’s just that I’ve finally compartmentalized what is happening to Kohen, like how I’ve done with my job for the past twenty years. It’s how I can be witness to countless horrible sights, smells, sounds, and experiences—bearing witness to the evil that men and women do to one another—and yet still do my job (and maintain my sanity).

The mechanism I’ve used in my job to cope with the horrors of life in the real world (where people commit terrible and violent crimes against each other) isn’t something I’ve ever consciously tried to put into effect, it just happens. And it seems to have worked fairly well the past two decades. But I do remember when there was a crack in the wall; the one time when this coping mechanism momentarily failed and emotions exploited the opportunity.

It came after three juvenile deaths within an eight month period between 2008 and 2009.

In November of 2008, I dealt with a fourteen-year-old who used his parents’ shotgun to kill himself in their bedroom while they were out for the evening.

In March of 2009 I worked in vain to save the life of a one-year-old boy in his driveway (the same age as my oldest son at the time) after he was backed over by a vehicle. All the CPR and other lifesaving efforts in the world made no difference, he succumbed to his injuries and there was nothing else we could do for him.

Then in July of 2009, a six-year-old boy went missing at the lake over the 4th of July weekend. It was presumed he drowned but divers could not find his body.

That following Monday evening, after the lake had been cleared out of beach goers and campers who returned to their normal work week, the boy’s body surfaced. I responded to the scene after he was pulled from the water and remained beside his body until he was transported for autopsy later that night. Watching the sun go down, and a breathtaking full moon rise over the mountains on the opposite side of the lake while I stood watch over the deceased child, was quite a surreal moment.

It wasn’t long after that I was riding in a car to Oregon when—for the briefest of moments—those emotions got the better of me. That spate of three juvenile deaths, for some inexplicable reason, momentarily compromised my coping mechanism and I wept.

I’ve been involved in countless other death investigations before and since then, involving babies, children, and adults (to include suicides, car accidents, fire, gunshots, stabbings, etc.) but I have never again had that breech in my usually impenetrable wall.

But what worries me is I believe I’m employing this same subconscious coping mechanism with my son. It’s been a long time since I’ve felt emotions about Kohen’s situation. For over a month after learning of his cancer, I cried every day. Now . . . nothing.

I’m drained. I feel distant and disconnected (even from the rest of my family), like I’m just going through the motions.

And I’m tired. Tired of talking about Kohen and his cancer; tired of giving updates about his cancer; tired of even writing about it. I’ve grown completely numb—I can’t even remember the last time I’ve cried over Kohen. And that scares me.

Just like people say about parenting not coming with an instruction manual, there’s also no instruction manual for how to deal with life when your child gets cancer.

Who knows? Maybe this is just a touch of unconscionable narcissism on my part. Maybe it’s just an excuse for being a deficient husband and neglectful father. Or maybe I’m just being a self-indulgent jerk, wallowing in my inner conflicts and wrestling with my own emotions when my focus should be on my son. I don’t really know, but hopefully one day I will have the answer and get it together.

It is Well

The Classic

It is no secret that I prefer the old hymns over much of the modern music used in churches today. Those enduring hymns were substantive, full of sound doctrine, and equivalent to a sermon set to music. Whereas so much of today’s music for worship is a mile wide and an inch deep, and maddening in its repetitions.

Of all the great hymns, my favorite has always been Horatio Spafford’s, It Is Well With My Soul.

What makes that hymn so meaningful to me is not only the song itself, but the story behind the song. If you’re unfamiliar with the origination of this song, here’s a synopsis:

  • Horatio Spafford (1828 – 1888) was a lawyer living in Illinois when he lost many of his real estate investments in the Great Chicago Fire of 1871. He invested in those properties in the spring of that year, only to lose most of them in the infamous October blaze.
  • That same year, Horatio’s only son succumbed to Scarlet Fever, dying at only four years of age.
  • Two years later, Horatio lost even more money in the financial crisis of 1873.
  • Deciding to take a family trip to Europe in November of 1873, the Spafford family, including Horatio, his wife Anna, and their four remaining children (daughters Tanetta, Elizabeth, Annie, and Margaret), all booked passage on the steamship Ville du Havre. However, an unforeseen change in business plans required Horatio to stay behind, sending only his wife and daughters, who he would meet up with later.
  • On November 22, 1873, as the Ville du Havre was crossing the Atlantic Ocean, it was struck by another ship, the Loch Earn. The Ville du Havre sustained too much damage to remain afloat and it sank, killing 226 people, four of which were Horatio and Anna’s daughters.
  • When Horatio’s wife, who survived by clinging to floating debris, reached England, she sent her husband a telegram. It said: “Saved Alone. What shall I do?”
  • Horatio promptly booked passage on a ship and headed across the Atlantic to be with his wife. At some point during the voyage, the captain of the ship informed Horatio that they were passing over the exact location where the Ville du Havre sank.
  • After learning this, Horatio retired to his cabin in the ship where he penned the hymn It Is Well With My Soul which has endured for nearly a hundred and fifty years. It’s been covered by many different musical artists and the chorus has even been grafted into moderns songs.

You can listen to this profound classic here:

The Modern

One of the modern songs which incorporates the chorus of Horatio’s hymn is one that I was listening to through the first month after learning of Kohen’s cancer diagnosis. Although nowhere as doctrinally meaty as Horatio’s magnum opus, this song, simply titled It Is Well, seemed to be the perfect song for the perfect moment.

With such great suffering, like we are experiencing right now with our son, this song is impossible for me to get through without shedding tears.

For those who are suffering, you will quickly recognize that this is much more than just a “pretty song.” If you’ve never heard it before, put a few minutes aside from your busy day and listen to it, cherishing the song for its beauty, its simplicity, and its reminder to “Let go, my soul, and trust in Him; the waves and wind still know His name.”

Conclusion

In 1902, a man was in attendance at a church in Worcester, Massachusetts when the story behind Horatio Spafford’s It Is Well With My Soul was featured. After singing the song and hearing the tragic story behind its writing, the unidentified man, who had recently suffered great financial loss, was recorded as saying:

“I will never again complain of my lot. If Spafford could write such a beautiful resignation hymn when he had lost all his children, and everything else save his wife and character, I ought surely to be thankful that my losses have been so light.”

I pray that no matter what we go through with Kohen, I am able to lift my head and my voice and emphatically proclaim that indeed, it is well with my soul.

Not Wanting to be a Burden

Things have been improving for Kohen lately, as his leg is feeling much better. He’s also been handling the chemotherapy fairly well.

The time spent in the hospital, however, has been weighing heavily on him and his mommy. Especially when they expect to be coming home on a certain day, only to be delayed by a day or two (turning a long hospital stay into a longer hospital stay) . When this happens it makes it very hard on them, as they are missing home so badly.

This past week Kohen and Mommy were gone from Tuesday morning till Sunday night. They were home for about 36 hours before having to leave for the hospital again this Tuesday morning. We are trying to face this one day at a time, but when we consider we’re only one sixth of the way through his chemo, it seems like the road is so long, we’ll never get through it.

You go though so many emotions, and experience so many different feelings, when your child is battling cancer. None of which, of course, you’re ever truly prepared for.

One of the things that cuts me to the heart (besides Kohen’s suffering and the weight of this whole matter) is when people sacrifice on Kohen’s behalf. Whether it be their time, money, or resources, it all breaks me.

We’ve been touched by the countless people who’ve extended their desires to assist our family: everything from offers to deliver food, offers to babysit, and offers to borrow their car. Yet, even though it’s a blessing to have so many offers of help, we usually never ask for that help or redeem those offers. It’s a weird position to be in: to need such help, but not being willing to accept it. (And currently, the help we need most is emotional support as this ordeal is taking its toll on all of us.)

Of course, there’s no way we could have gotten this far without the tremendous amount of help we’ve already received from family, friends, and strangers, but beyond the absolutely necessary, we tend to simply manage it all the best we can as we attempt to traverse most of this journey by ourselves. Some may say it’s because we’re too proud to ask for help, but that’s not it at all. We simply understand that people are busy, they have their own lives and their own concerns, and we simply don’t want to be a burden.

The Hair Loss Begins

I noticed the first one on Christmas morning. I was carrying Kohen’s breakfast plate to the sink when I saw it.

It was an innocent looking hair. I thoughtlessly plucked it off the plate, then I froze. It took a few seconds for it to register that this was no random hair. It was the first domino in what would be Kohen’s total hair loss.

I wasn’t certain how I’d feel about that day when it arrived (the day Kohen’s hair would begin falling out). I knew it was coming, and I thought I was prepared for it.

I wasn’t.

That realization hit like a ton of bricks. And it hurt . . . a lot.

The solitary hair on Kohen’s plate was just another cruel reminder that my boy is sick and the answer to his sickness (in the medical field of the 21st Century) is to poison him with chemicals so toxic, it causes his hair to fall out, his hearing to be permanently damaged, and a laundry list of other ailments that will arise throughout his life.

But, as with everything now, I suppressed my feelings about the hair loss and moved on. It’s a coping mechanism that, for the time being, helps.

To support their younger brother, Kohen’s older brothers all agreed to shave their heads, and in turn, Courtney agreed to purchase them all hats of their favorite football teams for doing so. It turns out that Christmas day would be the day the shaving would begin.

So, before dinner Courtney shaved Kohen’s head. After dinner she shaved Asher’s head. Two days later, when the boys’ hats arrived in the mail, it was Calvin and Elijah’s turn.

Thank you, boys, for supporting your baby brother during all of this. You all look so handsome, and mommy and daddy are so proud of you guys.

The Port

I’ve mentioned Kohen’s port in previous posts (and even described its purpose and function), but today I thought I’d share an illustration of a port, to provide you with a better understanding of what it is.

And Below is a picture of Kohen’s chest where his port was surgically implanted (above the scar). His port was installed in Salt Lake City two days before Thanksgiving while he was under anesthesia for his biopsy.

His port will eventually be removed once he’s completed his chemotherapy treatments. And that can’t come soon enough.

Fractures, Fevers, and Knife Wounds, Oh, My!

Day Thirty-Three: Tuesday, December 17, 2019

Kohen left home the previous Tuesday morning for what was supposed to be three or four days of chemo. After fracturing his femur, he did not return home until tonight, one full week later. He left on crutches and in good spirits, he returned home in a brace, in a wheelchair, and in pain.

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Day Thirty-Seven: Saturday, December 21, 2019

Kohen went to sleep early today, around 4:30 PM. Later in the evening Courtney checked his temperature: he was running a fever. As you may or may not know, during chemotherapy a fever is a bad thing. It is a signal that Kohen’s body is dealing with an illness or sickness that he’s no longer equipped to battle with due to his white blood cells being decimated by the poisons of chemo.

All night long Courtney stayed in contact with the doctor as she monitored Kohen every hour, taking his vitals and checking his fever. We were on the other side of 2 AM before we finally went to sleep.

Day Thirty-Eight: Sunday, December 22, 2019

This morning Kohen’s fever still persisted and he was on his 16th hour of sleep (he never sleeps that long). It was decided that Kohen needed to get to the hospital.

We were supposed to have the family together for two weeks between the first and second chemo treatments. However, after breaking his leg, those two weeks got trimmed down. And now, with his return to the hospital for a fever, that time is even shorter.

Kohen was admitted to ICU and will remain in the hospital for two days, unless more complications arise.

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Day Thirty-Nine: Monday, December 23, 2019

The report from Courtney at the hospital is that Kohen is doing better today. His fever is down and he has a good appetite.

Day Forty: Tuesday, December 24, 2019

Kohen returned from the hospital this afternoon. 

Day Forty-One: Wednesday, December 25, 2019

Kohen’s aunt and uncle prepared a full banquet of food for us, and had it delivered so we could enjoy a great meal.

The kids were also blessed with gifts from family, friends, and strangers, all of whom provided encouragement and support for the battle Kohen is enduring and the stress his siblings are living with during this trying time.

One of the gifts our children received was survival kits. Each kit contained a Leatherman-type tool, a combined knife-spoon-fork utensil, a fire starter, a knife, and other items you’d expect to find in a survival kit.

It wasn’t long before Kohen was trying to open a package with that knife when he cut his finger. Fortunately, it wasn’t too bad and after a little mending, he was back to enjoying the day.

However, not even twenty minutes later, Phoebe started crying as blood began running from her hand. She too, had done the exact same thing as Kohen, but her cut was far worse than his.

I now expected to be spending Christmas at the ER while Phoebe got sutures for her cut, but Courtney was able to get it taped up well enough to close the wound. She then wrapped up Phoebe’s finger to better secure it.

Before long Phoebe was back to playing as if nothing happened.

Day Forty-Seven: Tuesday, December 31, 2019

Kohen and mommy left for Reno before sunrise this morning.

Today began the second round of chemotherapy. It’s expected they will be gone for five days for treatment, then they will be home for only two days before they go back for another five days. January will already be depressing enough, but not having my wife and son around will only exacerbate that depression.

Day Forty-Eight: Wednesday, January 01, 2020

After eleven and a half months of a good year, 2019 ended on a horrible note. We expect most of 2020 to be miserable as well as we face more chemo and major amputation surgery of Kohen’s leg. I am hopeful, however, that a year from now I can sit here and pen a New Year’s Eve 2020 post with much better news and much better hope heading into 2021.

Happy New Year, everyone.

(Oh, and for those wondering, Phoebe’s finger is doing much better today. She’s nearly all healed up.)

A Brief Glimpse Behind The Cancer Curtain

Unless you’ve experienced cancer yourself, or have gone through it with someone very close to you, it’s hard for most people to even begin to comprehend how it affects every facet of your life. Until a month and a half ago, I was one of those people.

So today I would like to give you a little peek into our lives (a glimpse behind the cancer curtain) by sharing this brief 30-second clip of the pain our son had to endure the other day while we were trying to move him. Perhaps a video—more than written words—can better illustrate just how trying and challenging that caring for Kohen has become.

I pray Kohen never considers himself a burden on us, for we are honored to call him our son, and we will be by his side through this journey—throughout the entire ordeal—because we are his parents, we love him with all our hearts, and that’s just what mommies and daddies do.


For those looking for ways to help:

1). Pray

Pray for healing, encouragement, and strength for Kohen and his family.

2). Send Kohen a card

Send cards and letters of encouragement to:

Kohen Pattison

PO Box 45

Silver Springs, NV 89429

3). Provide financial support through GoFundMe

Link here

4). Share the GoFundMe link on social media

Link here

5). Share The Kohen Chronicles on social media

Link here

6). Buy the Kohen’s Warriors T-Shirt

Link here

The Hits Just Keep Coming: Chemo Begins and Kohen Breaks His Leg

Day Twenty-Five: Monday, December 09, 2019

Chemotherapy was supposed to begin today, but it was postponed by one day due to the flu running through our family.

Day Twenty-Six: Tuesday, December 10, 2019

Saying goodbye to your spouse and youngest child as they leave for a week of chemo treatment, stinks. It’s a tough goodbye, to say the least. The first night alone was terribly depressing. Oh, how I hate when darkness falls.

Day Twenty-Seven: Wednesday, December 11, 2019

Today was Kohen’s second day of chemotherapy treatment. He was still taking it well and was in good spirits.

However, today was also the day he fractured his leg in the location of his femur that was already compromised by the tumor (and further compromised by the biopsy).

Kohen will now be in the hospital longer than initially expected. It seems like we just can’t catch a break.

(During his extended stay, a cast was formed for Kohen’s leg in order to manufacture a brace.)

Day Thirty: Saturday, December 14, 2019

Today is the first time in fifteen years of marriage that Courtney and I weren’t together on her birthday. In fact, this is the first time any of her five oldest kids did not get to spend her birthday with her.

But she was not alone, she had Kohen by her side. It was still depressing that the rest of her family didn’t get to spend her birthday with her, but they all understand why she couldn’t be with the rest of her family today; she has a higher calling, a greater purpose.

She was there with Kohen to support and care for him as he endured yet another day in this misery. Through all of this a mother’s love is on display, not just in words, but in practice, in action, and in sacrifice.

Neither Kohen nor any of his siblings will ever have to wonder if their mommy loved them. Instead they’ll only have to ponder how vast and how deep her love for them was.

Finding Comfort From Those Whose Feet Have Tread This Very Path

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Day Twenty-Four: Sunday, December 08, 2019

My wife and I were blessed by a visit from two lovely couples. And we were able to witness firsthand, the very providence that some will simply dismiss as coincidence.

But first, a little backstory:

Several times this past year our family had visited a church in the town to the east of where we live. After service we would chat with a few different people (out of the several hundred in weekly attendance), but there were two couples in particular that we tended to speak with regularly.

Now fast forward to December 08, 2019. These same two couples came to our home to be with us in our grief. We all sat in the living room and conversed about what was happening with Kohen. Then the amazing happened: we discovered each couple had their own cancer histories.

One couple, we discovered, has a son who suffered through leukemia about ten years earlier as a teen. Their son now works as a nurse in that same childhood cancer ward and that is where Kohen will be receiving his chemo treatment. So their son will be helping our son.

Wow, what a “coincidence,” right?

The second couple, we learned, had a twenty-year-old daughter who–also about ten years ago–suffered from cancer. She had Osteosarcoma in her upper leg . . . the exact same cancer in the exact same spot as Kohen.

Sadly, their precious daughter did not survive.

What makes this all so amazing is that out of a church of hundreds of people, the two couples we met and conversed with on each occasion we visited, just so happened to have past cancer stories that wove intrinsically into our current cancer story, and Courtney and I knew nothing about their histories until this visit.

Additionally, the fact that these two couples came to encourage us, and even brought encouragement and financial support from other members of the church that we don’t know and have never met (and all of this in spite of not even being members at their church) was a beautiful and merciful act of kindness of the caliber of James 1:27.

This visit was encouraging and helpful. Courtney and I have personally talked with many people about Kohen and his situation, but none who have suffered with experiences so closely related to ours. It was just what we needed.

After the visit, I pondered what our family’s future will look like because Courtney and I were exposed to two potential outcomes: one good, where a twelve-year-old boy beat cancer and is now working in the very same facility where he beat that cancer; and the other story where the end was the most devastating a parent could experience.

Perhaps Courtney and I are being encouraged for one potential outcome . . . or maybe we’re being prepared for the other. Either way it is not ours to know now, nor to worry about, but we are to trust the One who is sovereign over all things, including cancer.