Recovery Update

Currently it’s raining here in Salt Lake City, but inside the hospital the sun is shining because even though we are only three days removed from Kohen’s rotationplasty surgery, he is progressing remarkably well—even better than we anticipated at this stage.

Below is an x-ray image of the screws that have been permanently inserted into Kohen’s little body (getting through the TSA on flights will be an even more fun experience now). These screws are holding what used to be Kohen’s lower femur, securely into his pelvis.

Today he had his first physical therapy session and it went very well. He even got to toss a ball with his daddy from his bed.

We are expecting to have his epidural removed tomorrow and begin transitioning him to oral pain management.

In spite of everything he’s gone though the past three and a half months—and what he’s currently enduring—Kohen remains in good spirits.

We still don’t have a solid date yet of when he will be released, but we are getting closer. And with this little boy’s toughness, tenacity, and courage, we may end up being ahead of schedule for his recovery.

Finally, here is a short video of Kohen enjoying some blueberries . . . just because.

Post Surgery Update

Yesterday morning we got up before 5 AM Utah time (4 AM our time) and headed to the hospital. Kohen got checked in, his port was accessed (see below image), and we said our goodbyes as he headed off to anesthesiology shortly after 7:30 AM. The surgery itself began at approximately 9:30 AM.

While the surgery was taking place, Courtney and I left the hospital to grab lunch, then returned where we waited the remaining hours to be reunited with our son.

Besides needing two blood transfusions, Kohen did very well during his surgery. And not only was the tumor successfully removed from his leg, the rotationplasty was successful as well.

When surgery finally concluded around 8:30 PM, we got to see our precious baby boy again.

Now the long process of healing, rehabilitation, and physical therapy begins (all the while receiving eighteen more weeks of chemotherapy).

We are hoping that recovery over the next week goes well so we can be home in time for Kohen’s sixth birthday that will be upon us in less than two weeks.

As the First Phase of This Battle Concludes, the Next Phase is Just Beginning

Kohen successfully finished his three months of pre-op chemotherapy treatments on Sunday, February 23rd.

On Monday, February 24th, Kohen had a chest scan and MRI. The chest scan revealed the cancer has still not spread, and the MRI showed the tumor in his leg had shrunk a “fair amount.”

On Friday, February 28th, Kohen had a blood test and hearing test. The blood test showed his counts were good (so we can proceed with the upcoming surgery), and the hearing test revealed that he hasn’t suffered any hearing loss from the cisplatin.

This morning we endured the agonizing ordeal of having to say goodbye to our other children and now we’re currently on our long trek to Salt Lake City for Kohen’s twelve-hour rotationplasty surgery that’s scheduled for tomorrow morning.

How long we will be gone, we don’t know. It will all depend on how the surgery and recovery goes. One thing is certain, however: time in Utah will be sad on two accounts. One, we’ll be dealing with Kohen’s surgery that will drastically change his life forever, and two, we’ll be desperately missing our other children while we’re away.

Everything we’ve had to endure for the past three-and-a-half months really makes an article I wrote last year all that more poignant. I had no idea when I wrote it (nine months before this nightmare began), how the year would turn out.

I’ve reprinted the article (from Medium) below:

The Sheer Splendidness of Sharing a Shower: How a Tub Full of Toys Filled This Shower Vagabond’s Heart With Not Only Happiness, But Foreboding

(February 2019)

Recently my wife and I encountered an issue with the shower in our master bathroom which necessitated us using the kids’ bathroom to shower.

It’s an inconvenience, to say the least, as it requires several trips across the house to bring the various toiletries we need to practice proper hygiene. And inevitably, a towel or some article of clothing is always forgotten, requiring a trip back across the house.

But since becoming a shower vagabond in my own home, I’ve had the opportunity to experience something I wouldn’t have otherwise—an unexpected epiphany that’s given me a new perspective.

The kids’ shower is not like my shower at all. Their shower is a tub/shower combo, and instead of containing such things as adult shampoos, conditioners, and razors, the kids’ shower contains fruity scented and tear-free soaps, big-wheeled monster trucks, and plastic boats.

Normally, the kids’ toys scattered throughout the house is a point of constant irritation. “Clean up this mess” and “clean up that mess” is a common pronouncement heard echoing throughout our house multiple times a day. Strangely though, I felt no such annoyance when I beheld the myriad of toys in the tub.

Why not?

Two reasons come to mind.

One is simply because I want to encourage my kids to feed their imaginations, and their bathtub is their own private oceanic playground where scuba divers with action grips fight giant squids, giant squids fight ferocious sharks, and all of them fight the mighty Mokele-mbembe.

The other reason I don’t mind the clutter of toys in their tub is more therapeutic.

You see, something special happens when a parent finds themselves alone behind a locked bathroom door. That space is a quiet, secluded oasis for much needed introspection, where clarity of thought can be attained for any mom or dad who can spare a few minutes to take advantage of such a refuge. But you would think a mess of bath toys would be a distraction and a source of visual chaos, and I would have thought the same thing too, till I found myself standing there one evening gazing at their kaleidoscope of colorful toys.

In that brief moment of time, in the tranquility of that hallowed but humble bathroom, those toys told a tale. Not the typical tale of untidy kids who don’t clean up after themselves, but a tale of greater meaning, a tale of greater purpose, and a tale of a frighteningly inevitable conclusion to life that I dread.

In that moment of stillness, as I beheld all those toys—evidences of a childhood filled with innocence, imagination, and wonder—I was instantly reminded that this chapter of my life is fleeting . . . quickly!

Those epic shark battles, submarine wars, and experiments to see how long one can hold their breath under water, will soon come to an end in this bathroom. Replaced instead with doilies for bowls of potpourri on the counter, safety handlebars in the shower, and medicated shampoos.

It will be a house void of the sounds of joyful laughter, wisecracking banter, and yes, even bickering. All signs of a lively, thriving family will have been replaced with deafening silence, occasionally punctuated with the tears of my wife and I longing to return to these very days when our kids were young, our bodies didn’t ache, and death wasn’t so near.

This silence will be the new norm, heralding the next chapter of my life, a future chapter that—in spite of how stressful times can be right now—I don’t look forward to. A chapter defined by my aging body’s continual deterioration, adult kids who are too busy raising their own families to visit their mom and dad, and my eventual final breath.

So for now, I shower with a smile, cherishing what it means to be surrounded by plastic fish, rubber dinosaurs, and watermelon shampoo. And in spite of the approaching conclusion of my days here on earth, I’m comforted with the knowledge that—at least for the time being—I have the best life a man could ever ask for, and I wouldn’t change it for anything in the world.

More updates to follow.

Rotationplasty

Today marks three months since we discovered Kohen has cancer. That day (that feels like three years ago) started out like any other day, but has since turned our world upside down, changing our lives forever.

And now the next big step is upon us: the surgery date has been scheduled.

March 5th–just 13 days before his 6th birthday–Kohen will receive rotationplasty surgery in Salt Lake City.

The surgeon performing the rotationplasty is Dr. Jones. Here is an article mentioning him from a previous rotationplasty operation he performed on a little girl, and below is an illustration of what will happen:

Courtney and I were learning to adapt to the chemotherapy treatments as they’ve become the “new norm” for us, but now our boat is about to be rocked again.

I would be lying if I said this procedure didn’t terribly frighten me. I had successfully walled it off since learning about it–not giving it much thought as I already had enough on my plate to think about and to worry about. But now we find ourselves less than three weeks away from the surgery.

The gravity of what will happen next to my little boy (and how it will forever change his life) has finally gripped me. Especially when I add the fact that Courtney and I will be away from our other children for an entire week or two (depending on how things go).

Kohen’s siblings are struggling with what is happening to their brother, and having him and their mom gone constantly for chemotherapy treatments has weighed heavily on them. Now, with this surgery, they will be without their baby brother and both parents for up to two weeks.

To get a better perspective on how life with osteosarcoma and rotationplasty will be for Kohen and his family, I encourage you to take a little time and watch the following video of a boy who found out he had osteosarcoma on his tenth birthday, and who later underwent this radical surgery.

Courtney sent this video to me well over a month ago but I couldn’t bring myself to watch it until now. I’m glad I waited, because even now I sobbed through most of it.

More updates on Kohen will follow as the surgery date approaches.

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.

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.

IMG_2151

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.

IMG_2153

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