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.
THE KOHEN CHRONICLES 