Gratitude

As rough as the last few months have been—and as rough as Kohen’s rehabilitation and continued chemotherapy will be—we’ve been granted opportunities that remind us others have it far worse than we do. 

Like the little girl at the hospital (no more than two years older than Kohen) who has no legs below the knees and no arms beyond the elbows. Or like the parents who are spending weeks and months in the hospital waiting and hoping for an organ donation so their child’s life can be spared. Or the little kid across from Kohen’s room in ICU who passed away. 

All of these examples served to keep us from wallowing in pity for our own family’s plight, and they reminded me of the story about the man who lamented his lot in life because he was too poor to buy shoes, until the day he saw the man who had no feet.

This brings me to the subject of gratitude.

My wife and I are grateful beyond words for the mercy God has shown us throughout this ordeal, even during the times of greatest darkness and despair. It’s been a mercy we neither expected, nor deserve. 

In this spirit of gratitude, we wanted to take a moment to extend our gratitude to everyone who’s played a part in Kohen’s recovery so far. We are nowhere near done, but so many individuals and organizations have come together to assist us, it’s been a tremendous sight to behold. 

However, I’ve been fearful about doing this because I know I will leave someone out. It’s almost better to not publish this post than to unintentionally fail to mention even one person, but I trust if I neglected to mention you, you will forgive me and understand that our lives have been a whirlwind lately. There have been so many people who have helped and encouraged us, and in the chaos that has been our life for the past four-and-a-half months, sometimes our attempts at thanking each of you individually (and in this post) slips through the cracks. Please know our hearts and intentions are pure in this endeavor, and forgive us if we’ve forgotten you.

Thank you to all the family, friends, coworkers, and total strangers who have donated to help Kohen and alleviate some of the expenses of this ordeal for our family. The burden you have helped ease will never be forgotten.

Thank you to those who have taken on the task of watching our other children while we’re in Utah, as well as when Kohen and mommy are in chemotherapy and daddy has to go to work.

Thank you to those who have coordinated fundraisers on Kohen’s behalf, including Deacon Carlo & Debbie Managlia for hosting a fundraiser dinner, and Melissa Thomson for the “Kohen’s Warriors” t-shirt fundraiser. 

Thank you to those who’ve spread the word about Kohen’s plight, and thank you to those who’ve purchased the “Kohen’s Warriors” t-shirts.

Thank you to all the families who have provided meals for our family.

Thank you to all the doctors and nurses at Renown Hospital in Reno, Nevada who helped Kohen through his first 1/3 of Chemotherapy treatments.

Thank you to Dr. Jones and his staff at Primary Children’s Hospital in Salt Lake City, Utah for successfully removing the tumor from Kohen’s femur, and for the rotationplasty surgery that will allow him—with the aid of a prosthetic—to one day walk again, and live a normal life.

Thank you to the Ronald McDonald House Charities (our home away from home) and their wonderful staff for making our burden that much lighter while in Utah.

Thank you to all the families, groups, and organizations who made meals for all the families staying at the Ronald McDonald House.

Thank you to the Hartford, Connecticut SWAT Team for the gifts for Kohen (and making him an honorary SWAT member). 

Thank you to the Beverly Hills Police Department for the challenge coins

Thank you to Helping Hands and the Joshua Farler Foundation (both in Yerington, Nevada) for your donations.

Thank you to the Brooks Foundation of Reno, Nevada for your donation. 

Thank you to the Kiwanis Club of New Orleans for your donations.

Thank you to the Utah law enforcement agencies for all the swag, including the Salt Lake City Police Department, South Jordan PD, Herriman PD, and the Salt Lake City FBI. 

Thank you to Aimee Carr for all the hard work you did in procuring all the aforementioned Utah law enforcement paraphernalia.

Thank you to the Philadelphia schools for their gifts, cards, and encouragement from the students.

Thank you to the Northern Nevada Children’s Cancer Foundation in Reno for all the financial support as well as all the technical support to assist us in navigating these unfamiliar waters (that have now become all too familiar to us).

Thank you to the Paterson, Powers, and Grimm families for helping to make our holidays brighter. 

Thank you to the employee from the Moran Eye Center in Salt Lake City who bought my lunch when I got lost in her building.

Thank you to the Give Hope Foundation of Northern Nevada for their generous donation.

Thank you to the Tic Toc Diner, Mr. Roos, Acropolis Restaurant, and Spudley’s Super Spuds for the donation boxes in their respective Louisiana establishments.

Thank you to the Louisiana State Troopers (A & B) and the Nevada Highway Patrol for the police swag. 

Thank you to the East Jefferson Business Assoc., Living Water, CBD Wealth Management, A-1 Signs, CBT Construction, Entrepreneur’s Source, Elm wood Storage & Wine Cellar, Jefferson Parish Performing Arts, Bavarian Wealth Management, N.O.Vative Printing, and Jefferson Republican Pachyderm, all of the great state of Louisiana.

Thank you to the anonymous cop who sent Kohen his State of Ohio Combat Cross medal, stating that he wanted Kohen to have it because Kohen is “fighting harder than I ever did.” 

Thank you to Dawnbusters Kiwanis of Louisiana for their generous donations.

Thank you to the numerous police agencies throughout the nation and the world (too many to list here) who also sent patches, shirts, challenge coins, cups, and other swag for Kohen. 

Thank you to the members of Fellowship Bible Church of Carson City for their continued support and encouragement.

Thank you to Parkside Bible Fellowship Church and Logos Christian Academy, both of Fallon, Nevada, for their generous donations and delicious meals.  

Those I’ve mentioned above and those who I’ve failed to mention (please forgive me), have helped us more than you may ever know, and I well up with emotion when I consider how much Kohen is cared for and how much time, money, and resources people have sacrificed on our behalf. We couldn’t have done it without all of you.

When this trial began it was my intention to repay everyone who donated to help us, but it quickly become so much, so fast, that I’ve had to concede that there’s no way I could ever repay you all. However, during this ordeal our eyes were opened to the world of cancer sufferers that–to my shame–had been under our noses all along; we just never realized it. But now we are cognizant of this subculture of suffering, and as soon as we get through this we’ll begin doing our part to pay all your generosity forward for future families that will be enduring this ordeal . . . but who just don’t know it yet.

From the bottom of our hearts, thank you!

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Happy Birthday, Kohen . . . Here’s Another Round of Chemo

Today is Kohen’s sixth birthday. It also just happens to be the four-month anniversary of the day he was issued crutches and advised he should no longer walk on his leg.

We’re extremely grateful to have returned from Utah in time to celebrate his birthday at home (and before the earthquake that struck SLC this morning). And we are only home in time because Kohen’s recovery was so remarkable. He exceeded expectations—spending less than a week in the hospital from day of surgery to day of release.

Kohen had an epidural installed on the morning of the surgery which remained in him for five days: from the day of surgery on Thursday, (03/05) till Monday (03/09). Once the epidural was removed he was transitioned to oral pain management (OxyCodone and Tylenol) and this is when we expected the proverbial “bump in the road” in regards to his pain/comfort levels.

But by Wednesday (03/11) it was clear he no longer needed the Oxy, and he was completely weaned off it by Friday (03/13). He even stopped taking the Tylenol on Sunday (03/15).

Do you understand the marvel of this? Kohen’s less than two weeks removed from major surgery (leg amputated, a chunk of femur cut out, leg reattached with multiple screws inserted into his pelvis) and he’s been off all pain medication since Sunday.

Throughout this whole ordeal Kohen was spared any substantial pain. This is nothing short of miraculous.

Tomorrow Kohen begins the next phase of this ordeal: the commencement of more chemotherapy—eighteen more weeks of it to be exact. But today we won’t think about that. Instead we’ll pause to celebrate Kohen . . . the boy who brings us such joy, who is wise beyond his years, who has matured beyond his age, and who has endured more than many adults do in a lifetime.

Happy birthday, Kohen. We cherish you and love you to the moon and back, to the sun and back, and always and forever.

“Man travels the world over in search of what he needs, and returns home to find it.”

– George Moore

Leaving the Hospital

Although he still has his moments, Kohen has progressed so well and has felt so good, he’s exceeded expectations (this kid is so strong and so special). Because of his rapid recovery, Kohen was discharged from the hospital on Wednesday (just six days after his radical rotationplasty surgery).

Below is a comparison from last Thursday night (just after getting out of surgery) and Sunday night (just three nights later).

On Tuesday Kohen got to use his walker for the first time since his surgery and he went quite a ways down the hall. He wanted to keep going but we finally had to force him to stop and rest. This boy is determined.

We spent last night at the Ronald McDonald House before heading out this morning. Currently we’re on the road and back in Nevada (just 300 miles outside Reno). We’re expecting to be home in a handful of hours but this ordeal is long from over.

Up next: Kohen’s chemotherapy reconvenes in a week and our new life of adjusting to Kohen’s disability begins now.

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.

Enjoying the Little Moments When Kohen’s Home

Kohen is currently in between chemo treatments but (once again) he spiked a fever last night, so at half past nine o’clock he and Courtney set off into the cold, dark night to head to the hospital. He was admitted to ICU where he will likely spend the rest of the day (if not overnight again).

It’s times like these that make me cherish when he’s home even more, brightening everyone around him with his infectious smile and funny little jokes. Like this one:

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.