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.
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 . . .
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
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.
“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.
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.
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.
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.
My wife stayed up late the night before, researching our son’s cancer. This morning she told me that because of the lack of other symptoms associated with Kohen’s condition (e.g. fever, lethargy, general illness, etc.) she believes the tumor in Kohen’s leg may actually be benign. We are holding out hope that this is the case, and that very hope helped to contribute to today being a good today. I didn’t even break down all day. But then came the evening.
In the evening Courtney talked to Kohen’s oncologist which brought us back down to reality. Afterward, the cloud of grief retuned over my head, and that dark cloud returned with a vengeance.
I began feeling intense anxiety and got sick to my stomach. What started out as a great day turned miserable. So many different roads we have to decide between, all with lifelong ramifications. And “lifelong” may not even end up being that long after all for our little Kohen.
We are having to make so many life and death decisions for our son, all the while snared in the suffocating grip of the tendrils of grief.
Day Eight: Friday, November 22, 2019
Today makes one week since our world was turned upside down. Seems like a month ago.
I woke up feeling neutral; not good, not bad, just neutral.
Later in the afternoon we got word that we’ve been scheduled for a 9AM biopsy appointment next week in Salt Lake City, Utah. We will then know for sure if the tumor is benign or malignant. This whole ordeal feels like a runaway train, and I just want to get off.