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
(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.
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:
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.
The prescription was finally filled and I returned to the hotel room where Kohen ingested the anti-nausea medication. The medicine worked. Kohen was now able to hold down his pain medication and because of that, his pain subsided.
Courtney and I decided at that point to try getting Kohen home, and not stay one more night in Utah (as we were contemplating due to his condition). Our new goal was to get half of the trip completed today, bedding down for the night in Elko, Nevada (four hours from Salt Lake City, four hours from home).
As we were preparing to leave, Kohen spent time on the phone speaking with all his siblings back home. It cheered him up, and it cheered up his mom and dad, too.
Around noon (11:00 AM Pacific) we carefully loaded Kohen in the car, with the help of the hotel’s wheelchair, and headed for Elko. The snow was falling again but the road conditions were still good.
Kohen fell fast asleep from the pain medications and Courtney sat in the back with him to tend to any of his needs.
About one hour outside Salt Lake City, Courtney received a frantic phone call from her mother who was currently at our house watching our other five children.
Apparently two of my kids got in a disagreement which ended in one of my sons, Calvin, swinging his ball cap at his big sister, hitting her in the hand. This normally would have not been too big of a deal, except Calvin’s hat was adorned with a large metal fishing hook. The hook went through my daughter’s finger, embedding itself so deep, the point began to protrude from another area of her finger. It was so bad, in fact, even the paramedics who responded could render no assistance in its removal.
Long story short, my sister-in-law rushed to our house to collect Samara and get her to the ER. (Yay! Another hospital bill.)
Meanwhile, Courtney and I decided to not stay the night in Elko, but to push through the full eight hours (seven remaining) to get home. I knew I could not safely do it, though. I was already having difficulty keeping my eyes open in the middle of the day, but Courtney said she could complete the drive if only she can get some coffee.
After grabbing gas, food, and coffee in Elko, Courtney was at the helm as we continued west. Kohen had awoken just long enough to eat some food and take some medicine before falling back to sleep.
After dark, we stopped in the little town of Lovelock and switched drivers again. Kohen continued sleeping as I drove the remainder of the way home.
We arrived at the house at 7:00 PM on Thanksgiving eve; so grateful to be home and to see how joyous all the kids were to be reunited with Kohen, all of them except Samara who had still not returned home from the hospital yet for her fishing hook injury.
Almost an hour later, Samara arrived home with her aunt. It was so nice to see our eldest daughter again, albeit temporarily with one less usable finger. (And yes, she and her brother reconciled their differences.)
Courtney and I also learned that in the three days we were gone, our vacuum quit working, a faucet in one of our bathrooms broke, and our oven no longer heats above 300 degrees.
When it rains it pours, but it was still nice to be home with the family, and watch my oldest son read to Kohen.
Day Fourteen: Thursday, November 28, 2019
Today was Thanksgiving. Due to the circumstances, we had not prepared for the holiday so we were going to scrounge together some Thanksgiving-like food from our kitchen, including some turkey breast from the freezer (it still counts as a Thanksgiving turkey, doesn’t it?). But Kohen was feeling much better today, so we asked him if he felt like going to his aunt and uncle’s for Thanksgiving. He said he was up to it, so to Aunt Stacie and Uncle JD’s house we went.
It was so nice to have a brief respite from the daily pressures, stresses, and worries that have been our constant companion for nearly two weeks, and it was nice for Kohen to have a diversion from the whirlwind of doctors, hospitals, and cancer tests.
This Thanksgiving, in spite of the terrible trial that has befallen us, we were thankful for the little things. Things like the fact that there’s still hope for Kohen; that we made it to Utah and back safely; that Kohen fasted all day at the hospital and yet somehow he was sustained; that Kohen slept the vast majority of the ride home from Utah (not even once needing to go potty); and that we had a warm and hospitable place in which to enjoy a home cooked Thanksgiving meal.
We are also thankful for the incredible outpouring of love that’s been shown to our little family in the form of well wishes, prayers, letters/cards of encouragement, and the generous donations. All of these things have helped sustain us and have come from co-workers, family, friends, and even complete strangers.
(I admit, I’ve wept repeatedly from the unmerited compassion for my little boy that’s been bestowed upon us from all over the country. There’s no way I could properly thank and repay everyone for what they’ve done for us these past thirteen days.)
We are also thankful to God for His tender mercies throughout this ordeal (even when we miss recognizing some of those mercies because the storm around us is so great).
And finally, I’m grateful that today–for the first time in nearly two weeks–I did not cry. Instead, I was afforded a brief respite from grief and got to cherish little things that two weeks ago I would have considered mundane, like the simple delight of watching Kohen enjoy a slice of pumpkin pie.
We arrived at the hospital at 10:30 AM for what we thought was the 11:00 AM biopsy. However, we quickly discovered the biopsy now wasn’t till 3:45 PM.
Poor Kohen. His morning fast for the biopsy now turned into an all day fast.
But it wasn’t like we were stuck trying to kill time. We were ushered from one doctor to another to another. Meetings, consultations, papers to sign, advocates to hear from, and on and on it went.
During the busy day Kohen received a chest scan to see if there was any indication that the suspected cancer had spread. The scan revealed it had not. This was one of the very few moments of good news so far during this ordeal.
When the time for the biopsy finally arrived, we discovered the 3:45 PM appointment time was only for checking in. The actual procedure itself wasn’t scheduled until 5:15 PM. Needless to say, this added more frustration to an already long and frustrating day.
Kohen has now been fasting all day long and has not complained once. What a trooper.
Eventually they were finally ready for Kohen to go into surgery. He was pulled through the halls in a little plastic wagon where we had to say goodbye to him at the doors leading to anesthesiology. He smiled and waved goodbye to us as those doors closed behind him.
He is so brave.
Courtney and I went down to the cafeteria (we hadn’t eaten anything in 24 hours) where we dined on the finest of hospital cuisine (well, as fine a cuisine as hospital cooks can produce), and in our case, that meant prepackaged salads. Afterward we returned to the post op waiting room to await the results of the biopsy.
It was around to 6:00 PM when the surgeon–still in his scrubs–found us and took us into a consult room. He said preliminary testing of the biopsy had confirmed our little boy has cancer.
He said the results indicated Osteosarcoma, not the Ewing Sarcoma that doctors initially believed it was.
The difference? Not much.
Treatment will be the same (chemo, surgery/amputation, more chemo), and the survivability rate for our son still hovers around 70%.
If there was any good news in the new diagnosis, it’s that the amount of chemotherapy required for Osteosarcoma is a little less than what is prescribed for Ewing Sarcoma.
Since he was already under anesthesia, surgeons took the opportunity to install a “port” into Kohen’s chest, and running a tube up inside the side of his neck. The port in his chest raises his skin upward like a little mini-volcano. These implants will serve as a means to administer him chemotherapy and other medications once we begin treatment in Reno.
Kohen was still groggy when we were reunited with him. He was then moved to a recovery room where he had a very upset tummy and kept throwing up. Staff suspected it was from the anesthesiology, pain medications, or both.
Eventually Kohen went one whole hour without throwing up (at around midnight), so it was then that we were discharged, and finally left the hospital . . . 14 hours after we arrived.
Unfortunately, by the time we pulled into our hotel parking lot, Kohen threw up again. And that was the story for the remainder of what was left of the night. We tried sleeping but Kohen kept waking up sick. And then, to make matters worse, the pain meds had worn off, so now he was feeling the pain from the surgery in his left leg, as well as the implants in his upper chest and neck region.
We couldn’t get his pain mitigated because he couldn’t keep the pain medicine down. I would have to say it was one of the worst nights of my entire life. My little boy was sick, in pain, and we couldn’t even move him. We felt utterly helpless. All this stress caused my stomach to become wildly upset, too.
After the sun came up I drove to a Walgreens about 15 minutes away to get a medication for Kohen that would keep him from throwing up. When I was about one minute away I realized I had accidentally left the prescription at the hotel room.
At this point I was a blubbering fool. Driving through the tears I figured I was already so close, I’d continue and see if Walgreens could fill the prescription another way.
The pharmacist and his assistant were, let’s say, probably not in the running for that store’s customer service award. However, in spite of their attitudes, they offered to fill the prescription based on the picture of it that my wife texted me, but only after they confirmed with the hospital.
After a while they informed me they couldn’t get a hold of anyone at the hospital to confirm it. This required I drive all the way back to the hotel. On my way back, Courtney texted to tell me the doctor just called the prescription in himself. So, I turned around and headed back to Walgreens again.
After another long wait the pharmacist and his assistant said they still hadn’t received anything from the doctor. Shortly thereafter, I discovered from Courtney that the doctor called the prescription in to CVS Pharmacy, not Walgreens.
I then drove to CVS, still a wreck, and sat in their waiting area for the prescription to get filled. It felt like time stood still. As I sat there with my stomach torn up from the stress and grief, I had to excuse myself to the bathroom to throw up.
How fast life can change. Less than two weeks ago I was living a worry free, happy life without a care in the world. Now here I was: battling to save my son, grieving for his suffering, and vomiting in a CVS bathroom in a strange city far from home.
THE KOHEN CHRONICLES 