During Kohen’s second chemotherapy treatment he had an unexpected surprise from some very distant visitors.
Tag: Chemo
The Hair Loss Begins
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.
I wasn’t.
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.
The Port
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.
Fractures, Fevers, and Knife Wounds, Oh, My!
Day Thirty-Three: Tuesday, December 17, 2019
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.)
A Brief Glimpse Behind The Cancer Curtain
Unless you’ve experienced cancer yourself, or have gone through it with someone very close to you, it’s hard for most people to even begin to comprehend how it affects every facet of your life. Until a month and a half ago, I was one of those people.
So today I would like to give you a little peek into our lives (a glimpse behind the cancer curtain) by sharing this brief 30-second clip of the pain our son had to endure the other day while we were trying to move him. Perhaps a video—more than written words—can better illustrate just how trying and challenging that caring for Kohen has become.
I pray Kohen never considers himself a burden on us, for we are honored to call him our son, and we will be by his side through this journey—throughout the entire ordeal—because we are his parents, we love him with all our hearts, and that’s just what mommies and daddies do.
For those looking for ways to help:
1). Pray
Pray for healing, encouragement, and strength for Kohen and his family.
2). Send Kohen a card
Send cards and letters of encouragement to:
Kohen Pattison
PO Box 45
Silver Springs, NV 89429
3). Provide financial support through GoFundMe
Link here
4). Share the GoFundMe link on social media
Link here
5). Share The Kohen Chronicles on social media
Link here
6). Buy the Kohen’s Warriors T-Shirt
Link here
The Hits Just Keep Coming: Chemo Begins and Kohen Breaks His Leg
Day Twenty-Five: Monday, December 09, 2019
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.
The Two-Week Anniversary Since Learning Our Child Has Cancer
“There is an appointed time for everything. And there is a time for every event under heaven.” (Ecclesiastes 3:1)
Day Fifteen: Friday, November 29, 2019
Today marks exactly two weeks since our world came crashing down. It’s now time that I switch my mindset and prepare to battle this cancer with my son.
There is a season for everything. In this trial, the season to mourn has passed and the season to fight has begun. It doesn’t mean that I’ll always be fighting with dry eyes, it just means that it’s time for battle in spite of my grief.
Day Sixteen: Saturday, November 30, 2019
Well, the epic battle I anticipated commencing, is now postponed due to the flu spreading through our house. Fever, coughing, and vomiting have taken up residency in our home. As if the cancer diagnosis (and the fishing hook injury) wasn’t enough for us to endure, three of our six kids are now sick today, one of whom is Kohen.
Day Seventeen: Sunday, December 01, 2019
The texts and phone calls keep coming in. And although I am grateful for the concern of family and friends, I just don’t want to talk to anyone about Kohen right now. I am mentally exhausted. I want to talk about anything but this cancer. Fishing, football, sweet tea . . . anything but Kohen and his situation.
I long for company for my wife and I to visit with. Of course, with the flu running through our house, I wouldn’t want anyone to visit us and risk getting sick.
Today we set up a Christmas tree that Kohen’s aunt and uncle chopped down for us in the snowy Sierras. I spectated as the kids decorated the tree, then we watched an old I Love Lucy Christmas episode. It’s all about the little moments now, and there’s no place I’d rather be than in that moment with my family.
But I’m also dreading January. January has always been the most depressing month of the year and I suspect we will be incredibly lonely as the holidays move behind us. It will also be the time that the chemo treatments come fast and furious, so Kohen and Courtney will be at the hospital more during that time.
Day Eighteen: Monday, December 02, 2019
Doctors in Utah are now saying that after they ran more tests on the biopsy from Kohen’s leg, they’re not entirely sure it’s osteosarcoma. They say it has some of the characteristics of osteosarcoma, but that it’s missing other expected characteristics.
Ugh. This is so frustrating. The unknown (every step of the way) has become so daunting and discouraging.
(Spoiler: It would later be confirmed Osteosarcoma by a doctor out of Miami, Florida.)
Day Nineteen: Tuesday, December 03, 2019
We are rapidly approaching three weeks into this trial and I’m still thinking I’m going to wake up from this nightmare, yet each day I wake, I realize this is the new norm for us. I hate it and wouldn’t wish it on my worst enemy.
I am thankful today for the little things, like the fact that we are having a beautiful snow day with a fresh layer of snow blanketing the landscape.
Day Twenty-One: Wednesday, December 04, 2019
Today, while I was at work, it was yet another day for my wife filled with phone calls to doctors and insurance companies. She’s also been frantically working to prepare for Kohen’s treatment, including making a special area in our home for Kohen where his exposure to germs will be minimized.
She is truly amazing how she handles everything she does while bearing the weight of this situation. Moms are amazing . . . but stay at home moms are uber amazing.
Week Two: Transporting Kohen and More Bad News From Home
Day Thirteen: Wednesday, November 27, 2019
Continued from this previous article.
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.
To be continued.
Week Two: Facing The Elephant in the Room
Day Twelve: Tuesday, November 26, 2019
We were told that our 9:00 AM appointment was pushed back. We now had to be at the hospital by 11:00 AM.
We arrived at the hospital at 10:30 AM to a heartbreaking scene. Kids, of all ages, and in various stages of suffering from cancer, were everywhere. I wasn’t expecting to see that, even though we were at a children’s cancer hospital. I just hadn’t mentally prepared myself for what I would see.
It’s hard to imagine anything more sobering–more saddening–than walking through a children’s hospital, seeing all the suffering those children and their parents are going through. A heartbreaking story is behind every kid in a wheelchair, every kid hooked up to tubes, and every kid trying to conceal their bald head with a knit cap.
It’s the great elephant in the room.
I always knew these kids existed, but it was always someone else’s kid. It was never mine. I always saw these children on TV, in ads, in social media feeds, but like most people, I just walked by, turning a blind eye, justifying my indifference under a veneer of feeling grateful that I have been spared such a life (but how quickly our idyllic lives can change).
Here, together, as we walk through the halls of this hospital, we are surrounded by so many other families, going through what we are just now discovering. They are strangers but we all share a common thread, a debilitatingly burden in which we all have to endure watching our children suffer. And each one of us is hoping that it’s our child that pulls through in the end; not becoming just another statistic.
It’s barely been a week, yet facing this type of trial changes you.
Walking through the halls of a children’s cancer hospital, changes you.
Your outlook and perspective on life drastically changes.
In spite of trying to cling to anything that provides a sense of relative familiarity and normalcy, the reality is that the trivial things that once held great significance in our lives, now means very little. And those important things that we used to take for granted, we now cherish beyond comprehension.
To be continued.
Week Two: Road Trip
Day Nine: Saturday, November 23, 2019
Woke up neutral again. I’m feeling emotionally spent; numb. As the day progressed I began to feel a little better. I stayed busy at work, keeping my mind on other things. I even felt pretty good in the evening and am grateful for the moments of respite from grief and sadness, even though I still haven’t made it through a whole day without crying yet.
Day Ten: Sunday, November 24, 2019
Woke up in good spirits, still hoping and praying for a miracle, but still mentally preparing for whatever God’s will is in this situation.
Church was tough to get through today. His mom and dad shed many tears. Kohen was prayed for and prayed over.
It’s so difficult to talk to people about what is happening to Kohen without losing it . . . so very difficult.
Day Eleven: Monday, November 25, 2019
Today is the day of the big road trip to Salt Lake City, as a big snowstorm moves into the northern Nevada and northern Utah regions.
Kohen got a little car sick a few times, but aside from that, the trip was rather uneventful. We only encountered light snow during the drive; nothing too precarious.
When we arrived in Salt Lake City the snow began coming down in bigger flakes. It was a moment of beauty contrasted against the ugly that we are now living with.
After a stop at Whole Foods to eat and get Kohen some food for the next couple days, we drove to our hotel room and retired for the night. We were pooped and tuckered from the day’s seven hour drive. Tomorrow we find out if the tumor is benign or malignant.
To be continued.
THE KOHEN CHRONICLES 