Get Acquainted With Kohen

Kohen in Tennessee (circa April 2019)

Today marks eight months since our world came crashing down and our hearts were broken like nothing else we’ve ever experienced. Eight long months of a grueling journey to save Kohen’s life.

But who is Kohen? 

Over the past eight months it’s been easy to get lost in the chaos and grief of Kohen’s cancer, chemotherapy, rotationplasty, and rehabilitation–so much so, in fact–that it can easily overshadow who Kohen is, and we could completely miss the preciousness of this amazing little boy.

That is a shame, because few of you really know him aside from blog updates and pictures of him in a hospital bed. But he’s more than cancer, more than hospital visits, more than an object of our pity and empathy. He is our son, Kohen Gabriel Pattison. A dynamic, wise-beyond-his-years young man who is adored by his family and makes his mama and papa so exceptionally proud.

So who is this young man? This boy that has captivated our hearts? This blessing that has garnered the prayers, tears, and donations of strangers all over the country? Oblige me a moment to better acquaint you with our pride and joy.

He loves to count and he adores tigers. He’s surprisingly good at adult-level board games and he’s extremely witty for his age. He also enjoys fishing (which he’s a natural at) and being on the boat. I noticed early on he seemed most comfortable on the water.

Below I’ve included some pictures over the years where you can see why we love this little man, and why we are so thankful to each and every one of you who have given of your time, money, and resources, who have prayed and provided, and who have encouraged us through this dark time.

One of many fish this boy has held.
Crazy wigs and funny hats make him smile.
Tender moments are abundant in our family.
And goofy moments, too.
A handsome young man, no doubt.
Another hat, another goofy face.
Brotherly love.
My, what a big nose you have, Inspector Clouseau.
Holding a baby goat.
Trying to ride a baby goat.
Surprise!
Enjoying the fair and rodeo.
When you have unsupervised time with the markers.

More updates will follow as we approach completion of Kohen’s chemotherapy. Thank you all again, a million times over, for all the prayers, support, and encouragement.

Thankfulness

We remain grateful that Kohen has been recovering from his surgery (and enduring his continued chemotherapy treatments) remarkably well. And as a continuation from my previous post, we wish to extend our gratitude to all those who have helped us through these past five months (even in unique ways like the Spinuzzi family who raffled off livestock as a fundraiser) and those who—in spite of all the chaos, turmoil, and uncertainty that is occurring with the flu—have continued to provide encouragement to Kohen and ease the burden on our family. This includes Jill Hettrick who sends gifts to Kohen, Deborah Hayes who sends books and gifts to Kohen, Jill and Glenn Chatfield who sends cheerful cards to Kohen, Bob Rispoli (and the “Red Head”) who continues to be a prolific fundraiser that never rests, and Tim and Shayne Wuth who have opened their arms to us with continued assistance and spiritual encouragement.

With everything going on in the world right now, it amazes us that Kohen is still thought of, cared for, and loved much, by so many kind and generous people.

I plan on providing a more detailed update on Kohen’s current progress (including sharing the details of yet another trip to the ER for one of my other kids) in the next installment of The Kohen Chronicles, but for now I’ll conclude this update by sharing something Courtney wrote recently about thankfulness. It’s a good reminder.

Somewhere around 2 years ago I purchased the sign at the end of our hallway. I strategically placed it there so that as my children often walk that long hallway, they will have nothing else to see but that sign and be reminded of all the things for which they should give thanks to God for. Little did I know, that very sign would be my frequent reminder.

This path of cancer, surgery, and utter chaos in our lives has not been easy, but there is so much to be thankful for and so many roads that I would consider to be much more trying than this. So praise God that He is in control and we can rest in faith.

We are so thankful for the many people that have come forward to encourage us and bless us. And also for those that have walked this path before us and are now willing to walk it once again alongside of us.

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!

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.

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.

Sarcoma, Suffering, and Sovereignty

As we rapidly approach the end of January, I reflect on what’s transpired up to this point. It seems like it was six months ago when we got the news that turned our world upside down. Unfortunately, we only just passed the two month anniversary.

Regardless of what the passage of time since then feels like or what it actually is, I can tell you for sure that it feels like I’ve aged five years in those two months.

During these past couple months I have longed for those beautiful moments of mercy. Those moments when the pain is eased, even momentarily. That’s why I’ve coveted even the normally mundane in my life, these blessed times of distraction like going to work, taking care of the kids, and helping to keep the home standing upright. I’ve also buried myself in my writing, determined to get my next book published sometime in late 2020 or early 2021.

Since finding out our youngest son has cancer (Osteosarcoma), it has been one trial after another, including a trip to another state for a biopsy, enduring the grueling ordeal of a fractured leg, and the joys of chemotherapy which includes our family being separated for extended periods of time (just to name a few of our trials).

We have learned to appreciate the little things that we once took for granted, and we are thankful for the moments of relief from the physical, mental, emotional, and spiritual anguish that has been our constant companion since November 15, 2019.

We have been blessed by so many people—even complete strangers—during this time, we just can’t thank them all enough. So many people have helped us financially, with meals, with cards and letters of encouragement for Kohen, with gifts for our kids, and with being there for us during this incredibly difficult time, including a wonderful visit from friends who I haven’t seen in 21 years who drove in from California for a visit and to bring gifts for Kohen.

I understand the clay is not owed an explanation from the potter as to why Kohen got cancer, for who am I?

I shall not ask, as some are tempted to do, why do bad things happen to good people? I already know that answer. By God’s standards there are no good people, for none are good, not even one . . . myself and my family included. The more appropriate question to ask is how can God, who knows the wickedness of my heart, allow me to live another day?

Grace. That is why. And that is why I do not to seek an explanation for why this is happening. The fact that I have drawn another breath as I write this is a testament to His mercy. That fact that I have lived a long, comfortable life, and been blessed with a wonderful family when I deserve none of this, is a sign of His grace. And if Kohen survives this ordeal, it isn’t something any of us are owed, but it would be a blessing beyond what our meager words could express.

When things are going good, we’re oftentimes too busy to recognize His mercy in our blessings. And when tragedy strikes, we’re oftentimes too busy grieving to recognize His sovereignty in our suffering. But in all things, even in the storms, we are to give thanks to the Lord just as Job says:

“The Lord gave and the Lord has taken away. Blessed be the name of the Lord.”

In the whirlwind of chaos that has become the new normal for us, we have been blessed to experience God’s mercies in this storm. Like how our family intersected with other families who have suffered the ravages of cancer and who have now become a support to us, including one of their children who survived cancer now being able to provide direct help to our son at the hospital.

During this storm we’ve also had the opportunity to experience the comfort of God’s sovereignty. On December 11, 2019, while Kohen was on his second day of his first round of chemotherapy in the hospital, he fractured his leg. As you can probably imagine, this became an even greater challenge for us. We quickly discovered that trying to perform even the slightest of movements caused excruciating pain for Kohen.

I remember being angry that this happened. It was just another layer of grief on top of a constantly growing mountain of tribulation. But once the dust settled I realized that—because of the tumor and the biopsy—it was only a matter of time before this break in Kohen’s leg would have happened. And then it occurred to me: by God’s sovereign grace Kohen didn’t fracture his leg at home. It happened at the hospital where all the treatment he needed could be immediately obtained. It was then I could see that behind a frowning providence, He hides a smiling face.

We are benefactors of unmerited grace, tender mercies, and the comforting sovereignty of God that reaches beyond our finite comprehension.

So, again, I don’t ask why this is happening to us, I only pray that we don’t miss the purpose of this trial when it’s finally revealed. It is also my prayer that through all of this we are being sanctified and can one day provide help and support to others in similar situations, like only those who’ve been through this themselves can do.

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.