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.
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.
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.
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
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.
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.
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.
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:
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.
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.
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.