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.
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.
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 noticed the first one on Christmas morning. I was carrying Kohen’s breakfast plate to the sink when I saw it.
It was an innocent looking hair. I thoughtlessly plucked it off the plate, then I froze. It took a few seconds for it to register that this was no random hair. It was the first domino in what would be Kohen’s total hair loss.
I wasn’t certain how I’d feel about that day when it arrived (the day Kohen’s hair would begin falling out). I knew it was coming, and I thought I was prepared for it.
That realization hit like a ton of bricks. And it hurt . . . a lot.
The solitary hair on Kohen’s plate was just another cruel reminder that my boy is sick and the answer to his sickness (in the medical field of the 21st Century) is to poison him with chemicals so toxic, it causes his hair to fall out, his hearing to be permanently damaged, and a laundry list of other ailments that will arise throughout his life.
But, as with everything now, I suppressed my feelings about the hair loss and moved on. It’s a coping mechanism that, for the time being, helps.
To support their younger brother, Kohen’s older brothers all agreed to shave their heads, and in turn, Courtney agreed to purchase them all hats of their favorite football teams for doing so. It turns out that Christmas day would be the day the shaving would begin.
So, before dinner Courtney shaved Kohen’s head. After dinner she shaved Asher’s head. Two days later, when the boys’ hats arrived in the mail, it was Calvin and Elijah’s turn.
Thank you, boys, for supporting your baby brother during all of this. You all look so handsome, and mommy and daddy are so proud of you guys.
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.
Kohen left home the previous Tuesday morning for what was supposed to be three or four days of chemo. After fracturing his femur, he did not return home until tonight, one full week later. He left on crutches and in good spirits, he returned home in a brace, in a wheelchair, and in pain.
Day Thirty-Seven: Saturday, December 21, 2019
Kohen went to sleep early today, around 4:30 PM. Later in the evening Courtney checked his temperature: he was running a fever. As you may or may not know, during chemotherapy a fever is a bad thing. It is a signal that Kohen’s body is dealing with an illness or sickness that he’s no longer equipped to battle with due to his white blood cells being decimated by the poisons of chemo.
All night long Courtney stayed in contact with the doctor as she monitored Kohen every hour, taking his vitals and checking his fever. We were on the other side of 2 AM before we finally went to sleep.
Day Thirty-Eight: Sunday, December 22, 2019
This morning Kohen’s fever still persisted and he was on his 16th hour of sleep (he never sleeps that long). It was decided that Kohen needed to get to the hospital.
We were supposed to have the family together for two weeks between the first and second chemo treatments. However, after breaking his leg, those two weeks got trimmed down. And now, with his return to the hospital for a fever, that time is even shorter.
Kohen was admitted to ICU and will remain in the hospital for two days, unless more complications arise.
Day Thirty-Nine: Monday, December 23, 2019
The report from Courtney at the hospital is that Kohen is doing better today. His fever is down and he has a good appetite.
Day Forty: Tuesday, December 24, 2019
Kohen returned from the hospital this afternoon.
Day Forty-One: Wednesday, December 25, 2019
Kohen’s aunt and uncle prepared a full banquet of food for us, and had it delivered so we could enjoy a great meal.
The kids were also blessed with gifts from family, friends, and strangers, all of whom provided encouragement and support for the battle Kohen is enduring and the stress his siblings are living with during this trying time.
One of the gifts our children received was survival kits. Each kit contained a Leatherman-type tool, a combined knife-spoon-fork utensil, a fire starter, a knife, and other items you’d expect to find in a survival kit.
It wasn’t long before Kohen was trying to open a package with that knife when he cut his finger. Fortunately, it wasn’t too bad and after a little mending, he was back to enjoying the day.
However, not even twenty minutes later, Phoebe started crying as blood began running from her hand. She too, had done the exact same thing as Kohen, but her cut was far worse than his.
I now expected to be spending Christmas at the ER while Phoebe got sutures for her cut, but Courtney was able to get it taped up well enough to close the wound. She then wrapped up Phoebe’s finger to better secure it.
Before long Phoebe was back to playing as if nothing happened.
Day Forty-Seven: Tuesday, December 31, 2019
Kohen and mommy left for Reno before sunrise this morning.
Today began the second round of chemotherapy. It’s expected they will be gone for five days for treatment, then they will be home for only two days before they go back for another five days. January will already be depressing enough, but not having my wife and son around will only exacerbate that depression.
Day Forty-Eight: Wednesday, January 01, 2020
After eleven and a half months of a good year, 2019 ended on a horrible note. We expect most of 2020 to be miserable as well as we face more chemo and major amputation surgery of Kohen’s leg. I am hopeful, however, that a year from now I can sit here and pen a New Year’s Eve 2020 post with much better news and much better hope heading into 2021.
Happy New Year, everyone.
(Oh, and for those wondering, Phoebe’s finger is doing much better today. She’s nearly all healed up.)
Chemotherapy was supposed to begin today, but it was postponed by one day due to the flu running through our family.
Day Twenty-Six: Tuesday, December 10, 2019
Saying goodbye to your spouse and youngest child as they leave for a week of chemo treatment, stinks. It’s a tough goodbye, to say the least. The first night alone was terribly depressing. Oh, how I hate when darkness falls.
Day Twenty-Seven: Wednesday, December 11, 2019
Today was Kohen’s second day of chemotherapy treatment. He was still taking it well and was in good spirits.
However, today was also the day he fractured his leg in the location of his femur that was already compromised by the tumor (and further compromised by the biopsy).
Kohen will now be in the hospital longer than initially expected. It seems like we just can’t catch a break.
(During his extended stay, a cast was formed for Kohen’s leg in order to manufacture a brace.)
Day Thirty: Saturday, December 14, 2019
Today is the first time in fifteen years of marriage that Courtney and I weren’t together on her birthday. In fact, this is the first time any of her five oldest kids did not get to spend her birthday with her.
But she was not alone, she had Kohen by her side. It was still depressing that the rest of her family didn’t get to spend her birthday with her, but they all understand why she couldn’t be with the rest of her family today; she has a higher calling, a greater purpose.
She was there with Kohen to support and care for him as he endured yet another day in this misery. Through all of this a mother’s love is on display, not just in words, but in practice, in action, and in sacrifice.
Neither Kohen nor any of his siblings will ever have to wonder if their mommy loved them. Instead they’ll only have to ponder how vast and how deep her love for them was.
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.