Not Wanting to be a Burden

Things have been improving for Kohen lately, as his leg is feeling much better. He’s also been handling the chemotherapy fairly well.

The time spent in the hospital, however, has been weighing heavily on him and his mommy. Especially when they expect to be coming home on a certain day, only to be delayed by a day or two (turning a long hospital stay into a longer hospital stay) . When this happens it makes it very hard on them, as they are missing home so badly.

This past week Kohen and Mommy were gone from Tuesday morning till Sunday night. They were home for about 36 hours before having to leave for the hospital again this Tuesday morning. We are trying to face this one day at a time, but when we consider we’re only one sixth of the way through his chemo, it seems like the road is so long, we’ll never get through it.

You go though so many emotions, and experience so many different feelings, when your child is battling cancer. None of which, of course, you’re ever truly prepared for.

One of the things that cuts me to the heart (besides Kohen’s suffering and the weight of this whole matter) is when people sacrifice on Kohen’s behalf. Whether it be their time, money, or resources, it all breaks me.

We’ve been touched by the countless people who’ve extended their desires to assist our family: everything from offers to deliver food, offers to babysit, and offers to borrow their car. Yet, even though it’s a blessing to have so many offers of help, we usually never ask for that help or redeem those offers. It’s a weird position to be in: to need such help, but not being willing to accept it. (And currently, the help we need most is emotional support as this ordeal is taking its toll on all of us.)

Of course, there’s no way we could have gotten this far without the tremendous amount of help we’ve already received from family, friends, and strangers, but beyond the absolutely necessary, we tend to simply manage it all the best we can as we attempt to traverse most of this journey by ourselves. Some may say it’s because we’re too proud to ask for help, but that’s not it at all. We simply understand that people are busy, they have their own lives and their own concerns, and we simply don’t want to be a burden.

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.

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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.

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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.

Finding Comfort From Those Whose Feet Have Tread This Very Path

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Day Twenty-Four: Sunday, December 08, 2019

My wife and I were blessed by a visit from two lovely couples. And we were able to witness firsthand, the very providence that some will simply dismiss as coincidence.

But first, a little backstory:

Several times this past year our family had visited a church in the town to the east of where we live. After service we would chat with a few different people (out of the several hundred in weekly attendance), but there were two couples in particular that we tended to speak with regularly.

Now fast forward to December 08, 2019. These same two couples came to our home to be with us in our grief. We all sat in the living room and conversed about what was happening with Kohen. Then the amazing happened: we discovered each couple had their own cancer histories.

One couple, we discovered, has a son who suffered through leukemia about ten years earlier as a teen. Their son now works as a nurse in that same childhood cancer ward and that is where Kohen will be receiving his chemo treatment. So their son will be helping our son.

Wow, what a “coincidence,” right?

The second couple, we learned, had a twenty-year-old daughter who–also about ten years ago–suffered from cancer. She had Osteosarcoma in her upper leg . . . the exact same cancer in the exact same spot as Kohen.

Sadly, their precious daughter did not survive.

What makes this all so amazing is that out of a church of hundreds of people, the two couples we met and conversed with on each occasion we visited, just so happened to have past cancer stories that wove intrinsically into our current cancer story, and Courtney and I knew nothing about their histories until this visit.

Additionally, the fact that these two couples came to encourage us, and even brought encouragement and financial support from other members of the church that we don’t know and have never met (and all of this in spite of not even being members at their church) was a beautiful and merciful act of kindness of the caliber of James 1:27.

This visit was encouraging and helpful. Courtney and I have personally talked with many people about Kohen and his situation, but none who have suffered with experiences so closely related to ours. It was just what we needed.

After the visit, I pondered what our family’s future will look like because Courtney and I were exposed to two potential outcomes: one good, where a twelve-year-old boy beat cancer and is now working in the very same facility where he beat that cancer; and the other story where the end was the most devastating a parent could experience.

Perhaps Courtney and I are being encouraged for one potential outcome . . . or maybe we’re being prepared for the other. Either way it is not ours to know now, nor to worry about, but we are to trust the One who is sovereign over all things, including cancer.

What Exactly Does It Mean to be All Cried Out?

It is better to go to a house of mourning than to go to a house of feasting, because that is the end of every man . . .

Ecclesiastes 7:2

Growing up in the 80s, I was a big fan of R&B, and one of the many great songs that came out of that era of music was entitled All Cried Out by Lisa Lisa and the Cult Jam, also of Lost in Emotion, Can You Feel the Beat, and Head to Toe fame. (And no, that wasn’t a typo, the band’s name actually contains two Lisas.)

All Cried Out is a gut wrenching song, mostly because of the vocals. The hauntingly sad vocals are so effective in evoking the depth of the singer’s grief, that she could be lamenting the loss of her car keys and it would still be an equally sad song. But thankfully, the writers decided not to make the object of their song about lost keys or even spilled milk, but of a love lost.

When it released in 1986, All Cried Out reached number eight on the U.S. Billboard charts and number three on the R&B singles chart (and a remake of the song was produced in 1997 by the band Allure).

For those like me who enjoyed R&B back in the 80s (before it jumped off a cliff in the 90s and beyond), this is one of those songs you instantly remember when it comes on the radio, especially if you were experiencing pain or heartbreak at the time the song originally came out.

And for those who have a natural affinity for songs about heartbreak and loss, how could you not be drawn to this song’s melancholy melody and the despairing vocals, especially when combined with such grief-stricken lyrics like these:

All alone on a Sunday morning
Outside I see the rain is falling
Inside I’m slowly dying
But the rain will hide my crying, crying, crying

And later:

Don’t you know the heart will cause an inferno
Romance up in flames, why should I take the blame
You were the one who left me neglected (I’m so sorry)
Apology not accepted, add me to the broken hearts you collected

Just as I am irresistibly drawn to the many Lukas Graham songs that make reference to his father’s untimely death and how it affected him as a young man (e.g. You’re Not There, Happy Home, Here, Don’t You Worry ‘Bout Me, and 7 Years), I also gravitate toward melancholy books and movies. It’s why even my own books don’t necessarily have the happiest of endings. After all, in real life the lost dog doesn’t always return home, and the glass slipper doesn’t always fit the princess.

Even though I’ve always found All Cried Out to be an incredibly sad song (but in a beautiful way . . . if that makes any sense), I have never, in all my life, experienced the phenomenon that comprises the title of the song, namely, being all cried out.

I can now say, however, that after two straight weeks in the valley of unparalleled grief that began the day we found out about Kohen’s cancer, I am no longer a stranger to this phenomenon. I now know what it’s like to be all cried out.

But what exactly is it? What does it really mean to be all cried out?

It’s when you’ve cried so much—and so frequently—that you’ve simply reached a point where even though the waves of emotion continue coming to envelope you, you’ve lost the very ability to cry. You feel yourself crying–and your eyes swell with tears–yet the tears remain where they originate, never breaking forth. Biologically speaking, you’re simply no longer able to muster the necessary amount of moisture to cry. It’s crying, but without the ability to produce the tears.

I suppose that at this stage of Kohen’s cancer, it’s a good time to be all cried out because now is the time to begin the nearly year-long fight to save his life. We’re going to lose his leg, there’s no way around that, but we’re determined to not lose his life.

Perhaps being all cried out aids in my determination to do battle by not allowing me the time (or luxury) to wallow in my grief any more. Whether being all cried out is a normal phenomenon in these kinds of situations or a personal blessing in disguise, I do not know. But what I do know is being all cried out is a real thing, and it took me nearly fifty years to finally experience it. I only wish I hadn’t.

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.