Praise God from whom all blessing flow.

Praise God that Kohen’s rotationplasty surgery in March was a success.

Praise God that Kohen rehabilitated exceptionally well.

Praise God that Kohen has been learning to use his prosthetic like a pro.

Praise God for all of you who were there for Kohen throughout this ordeal, supporting him and his family as we traversed the darkest and most painful days of our lives.

Art by Angus Olsen
https://www.redbubble.com/people/Voltusfive/shop?ref=artist_title_name&fbclid=IwAR1RnUTbK-akcBmWfKxqij0iC52qo4bCp5opFbzymx0R_TE1WqLoTniJskI

Praise God that Kohen suffered only a minimal amount of permanent hearing loss from the chemotherapy.

Praise God that Kohen’s EKG showed no damage to his heart from the chemotherapy.

Praise God that Kohen handled nearly eight months of chemotherapy like a trooper, concluding his final treatment this past week.

And finally, praise God that Kohen’s final CAT scans have revealed no signs of cancer anywhere in his body.

But the road is long from over . . .

This week Kohen gets his port removed from his body. Then there will be tests and more tests as the months and years go by to make sure the cancer has not returned. And then there’s adjusting to a whole new life of living with a prosthetic.

Now, if you’ll excuse me, there’s a whole lot of summer we have to catch up on and memories to be made.

Kohen Kisses Chemo Goodbye (Deo Volente)

Lord willing, today is Kohen’s final day of chemo treatments. His ordeal, however, is not completely over, as we await test results to determine if the cancer has metastasized. There will be many more tests and examinations over the coming months and years of our little boy’s life, but today we rejoice—at least for the moment—that he has wrapped up the past nine months of this arduous journey, and completed his final round of chemotherapy.

What follows is Courtney’s update:


November 15th, 2019 seems like an eternity ago. That was the day my world was wrecked. That was the day that I felt a heartache I had never experienced in all my life—one that took my breath away and left me broken.


Looking back, I remember desperately wanting to fix it. I didn’t care what it cost, what it would take, just fix it. And yet I couldn’t. The only thing I could do was trust God. The weeks that followed only got harder. We were already trying to keep our heads above water with learning about Kohen’s diagnosis, traveling to Utah, starting chemotherapy, taking care of home life with 5 other children, and then Kohen broke his leg, making this trial ten fold what it already was.

This was the beginning of an entirely new trial—learning how to move him without causing pain, learning how to manage his pain, obtaining medical equipment to help us manuever it all. As if all of these trials weren’t enough, he would occasionally get life threatening fevers following chemo, requiring more time in the hospital and more time away from the family.

After what seemed like an eternity, we made it through the first 12 weeks of chemo and were now ready for surgery. That day arrived and it was sheer torture. Most people go into a surgery and just come out “fixed” on the other side. But our son wasn’t just going to have his leg fixed, he was going to be forever changed. Forever defined by this decision, and it was shocking. Forever people will see him differently. They will see him as the kid with the backwards foot, or the prosthetic leg. People will always be questioning his ability. Will he be able to perform the way others do? Can he keep up? Can he work? Why would his parents do that to him?


While working through the process of getting his prosthetic (and him learning how to use it) we still had 18 more weeks of chemo to complete. It was following one of these chemo treatments that Kohen spiked a fever and had to be taken to the hospital. And still, God proved faithful (that was the night Kohen never received the medicine from the hospital staff that he needed, an error that could have cost his life).

Over the past 8-1/2 months, we have cried buckets and buckets of tears. We have realized misplaced priorities. We have had our eyes opened to a cancer world that we never knew existed. We have seen God answer prayers, opening and closing doors along the way. It has been a long and sorrow-filled path, but it is finally coming to an end.

Today is the last day Kohen will spend in room 418. He won’t be coming back for a late night fever or another chemo treatment. Today, we celebrate! We are overjoyed to be concluding this nightmare and at the same time filled with angst over the scans that will be performed in just a few short hours to see if there is any visible cancer somewhere else in his body. The results of those scans will either bring us great peace, or an even heavier sorrow.

“This is the day which the Lord has made; Let us rejoice and be glad in it.“ Psalm 118:24

Please join us in rejoicing for making it through this trial in our lives and give thanks to God, the one who gave us the strength to endure to the end.

Thank you to all of you for your support through this journey, and please remain in prayer with my wife and me for Kohen’s continued progress and improved health.

Fevers, Nightmares, and Horses!

FEVER

As reported in my previous update, Kohen and Courtney left for the hospital around 10:30 PM on June 13th after Kohen spiked a fever of 101.7 (anything over 100.5 requires a trip to the hospital because during chemotherapy a fever can mean Kohen has an infection in his body, and that can be life threatening).

Unfortunately things didn’t go so well once they arrived at the hospital. The doctor ordered the necessary fluids and antibiotics for Kohen (stat) and instructed the nursing staff to take Kohen’s vitals every 15 minutes. But it wasn’t until after 6 AM (over six hours after Kohen arrived at the hospital) that the staff finally began treatment. This was a huge error that could have cost Kohen his life.

NIGHTMARES

A few hours after Kohen arrived at the hospital (about 3 AM) he awoke terrified. His heart rate spiked to 200bpm and he was crying out in terror but Courtney was unable to console him. This lasted for a few minutes before he eventually calmed down and fell back to sleep. The dream (something to do about people chasing each other) reoccured two more times that night.

The following day, Courtney slipped off to the shower in the hospital room while Kohen was napping. One of the doctors entered the room and woke Kohen. As soon as the doctor departed Kohen began crying hysterically and calling out for Courtney (just as he had done throughout the night). Again, he was inconsolable. He mentioned something about the doctor in his room “moving so fast.”

The following day Kohen came home. While home, Kohen took a nap on the couch next to me and when he woke I talked to him and patted his chest as he stretched before I left the room for a moment. I was only out of the room for less than ten seconds when all of a sudden I heard him call out to me, terrified. He was crying again, scared of something. He had not woken from a dream, he had been awake for a couple of minutes by then, yet he was again inconsolable.

Later that night, Kohen fell asleep next to me in bed. He then woke up terrified again. And again there was nothing we could do to calm him down. He even grabbed our headboard, gripping it in terror. This went on for a solid five minutes. We didn’t know what was going on and why he remained so scared after he was awake. At one point, while I was trying to talk to him, he got even more scared, asking me to stop talking to him because my mouth was “moving so fast” and that “everything was moving so fast.”

The way he was behaving was unlike anything I’ve ever seen in any of my kids. It was as if Kohen was having hallucinations. It was a truly terrifying experience for him and his parents, and we believe it was likely a result of the methotrexate “medicine” he’s been received during his chemotherapy.

Courtney had this to add about Kohen’s nightmares: “As with so much of this journey, I feel like a helpless bystander. Unable to ‘fix’ this for my son. As a mom that was always the ‘fixer,’ this has been my biggest challenge and I have had to learn to let go and allow God to be in control. I have had to learn to pray rather than to take matters into my own hands.

Courtney is also asking for prayer: “Praying for all nightmares or hallucinations to stop (there have been no more since the 16th), praying that the effects of the chemo will not be long lasting, praying that Kohen will have a long and healthy life ahead of him, and most importantly, praying that the challenges and hardships he has faced—that we have faced as a family—will be used in a mighty way for God’s glory.

Horses and Tahoe

We took the whole family up the hill to Lake Tahoe (only the most beautiful place on earth) for a trail ride on horses. It was so good to get Kohen out and to see him and his siblings enjoying some degree of normalcy.

Kohen rode his horse (named Snowball) with his prosthetic just fine and he loved every minute of it. Me, on the other hand, well . . . there’s a reason I haven’t ridden a horse in over a quarter century, and this horse ride reminded me why.

We then went to the beach where the kids got to explore, play in the sand, and try avoiding the typical cold Lake Tahoe water as the waves crashed in.

And finally, we have some good news about Kohen’s progress. After receiving his permanent prosthetic he has adapted well to its use. In my last update I had intended to get video of Kohen walking with his new leg without the aid of crutches, but the unexpected hospital trip postponed that. So, without further ado, below is a short clip of Kohen taking some of his first steps without crutches.

Since this video was taken (mid-June), Kohen has gotten more adept at maneuvering around on all sorts of terrain without crutches. We are so proud of what this little man has accomplished. The sky’s the limit for him.

Forward progress and another setback.

Last Friday Kohen received his new (permanent) prosthetic leg complete with his personally selected tiger design on the front and back.

Kohen did so well trying out his new leg, his prosthetist estimated that in a mere two weeks Kohen will probably no longer need crutches. But guess what? After returning home from receiving his new leg, he began walking on it with no crutches! He also got to try out his trike with his new leg. This is how he did:

I had intended to get some video of Kohen walking without crutches but Saturday night he spiked a fever and so, at 10:30 PM, Courtney was off to Reno to admit Kohen into ICU. This means he will be in the hospital for a minimum of two days and this week’s chemo treatment (scheduled for Wednesday) will now be postponed by a week, which means our expected time of concluding this miserable ordeal is also postponed.

But in spite of this demoralizing setback, we are still so proud of this little man. Everything he’s endured the past seven months—and continues to endure—and everything he’s accomplished in the face of all these trials, has been nothing short of remarkable. He is an inspiration to us all. We love you so much, Kohen.

End of May Update

Within two hours of posting my last update, we received word from the surgeon that Kohen can put full weight on his leg.

Woo hoo!

After I got home later that day, I received a wonderful treat. With his prosthetic on, Kohen walked unaided down the hall and into my arms where I was waiting for him (praise God from whom all blessings flow). It was a feeling like none other in the world. I am so proud of that boy.

Speaking of progress, back in the beginning of May, after watching an old Cosby Show together, my kids were enamored with the episode featuring Theo Huxtable and friends busting out some breakdancing moves. Of course, my kids thought it was pretty cool and wanted to give it a try. So I had to dig deep into the wayback machine to find a few tunes from my youth, and then the Pattison house was hip-hoppin’ and breakdancing!

Here is a video of Kohen breakdancing only two months post surgery. Nothing can hold this kid back.

A New Leg, an Earthquake, and Two Trips to the Lake

Today marks six months since we received confirmation that Kohen had cancer (November 26th). It has been the longest six months of our lives and we still have at least two more months of chemotherapy remaining.

I wanted to start off this update by extending my thanks to a few more of those who’ve helped us on this journey: the Galvin and Tripp families for creating a GoFundMe for Kohen, and the Paterson and Musser families for also creating a GoFundMe for Kohen. Both of these conduits for donations have been invaluable to us through this ordeal.

Last month Kohen received his temporary prosthetic leg, however, he’s only permitted to use it with the aid of crutches or his walker until the surgeon gives us the green light for Kohen to go full weight-bearing on it. He’s been walking well with it, adapting to it like a pro.

And we are all discovering the little issues that arise from the use of a prosthetic, like needing a special sock that makes a prosthetic more comfortable to wear, identifying areas on Kohen’s leg where the prosthetic is rubbing against his skin, and even misplacing the prosthetic. It’s one thing to misplace your phone, wallet, or keys, but misplacing an entire leg is a whole new experience for us. “Has anyone seen Kohen’s leg?”

This month Kohen got casted for his permanent prosthetic leg. He should be getting that one in the near future and he will hopefully be able to put full weight on it soon. We are all very excited.

On May 15th we were woken by our second earthquake in the past two months. This earthquake struck a few minutes after 4 AM. The kids missed it because—as kids always do—they slept through it.

Last week we took the kids to the lake. Kohen got to play in the sand and ride in a pedal boat (he even got to pedal).

I noticed when Kohen was younger, he had an affinity for being on the water (like his daddy). He didn’t care what he was doing, just as long as he was on a boat. Since then, his love for being on the water, and for fishing, has not waned (and he’s a great little angler).

This past weekend we had the pleasure of taking all the kids kayaking (it helps when you only live five minutes from the lake). If you like fishing but have never tried kayak fishing, you’re missing out. You simply must try it—you’ll be hooked (pun intended).

When our day was done, Kohen caught the most fish with 10. The rest of us caught a combined 14.

Even the fish can’t resist this kid. 🥰

These moments at the lake—getting Kohen on the water he loves—are not only precious, they help lift the spirits of a kid who’s known nothing but pain, doctors, needles, surgery, rehabilitation, and chemotherapy for the last six months.

Of course, we have to take extra precautions on the lake during this time (like keeping as much sun off him as possible), but it is all worth it to see the smile on his face and the joy in his heart.

Thankfulness

We remain grateful that Kohen has been recovering from his surgery (and enduring his continued chemotherapy treatments) remarkably well. And as a continuation from my previous post, we wish to extend our gratitude to all those who have helped us through these past five months (even in unique ways like the Spinuzzi family who raffled off livestock as a fundraiser) and those who—in spite of all the chaos, turmoil, and uncertainty that is occurring with the flu—have continued to provide encouragement to Kohen and ease the burden on our family. This includes Jill Hettrick who sends gifts to Kohen, Deborah Hayes who sends books and gifts to Kohen, Jill and Glenn Chatfield who sends cheerful cards to Kohen, Bob Rispoli (and the “Red Head”) who continues to be a prolific fundraiser that never rests, and Tim and Shayne Wuth who have opened their arms to us with continued assistance and spiritual encouragement.

With everything going on in the world right now, it amazes us that Kohen is still thought of, cared for, and loved much, by so many kind and generous people.

I plan on providing a more detailed update on Kohen’s current progress (including sharing the details of yet another trip to the ER for one of my other kids) in the next installment of The Kohen Chronicles, but for now I’ll conclude this update by sharing something Courtney wrote recently about thankfulness. It’s a good reminder.

Somewhere around 2 years ago I purchased the sign at the end of our hallway. I strategically placed it there so that as my children often walk that long hallway, they will have nothing else to see but that sign and be reminded of all the things for which they should give thanks to God for. Little did I know, that very sign would be my frequent reminder.

This path of cancer, surgery, and utter chaos in our lives has not been easy, but there is so much to be thankful for and so many roads that I would consider to be much more trying than this. So praise God that He is in control and we can rest in faith.

We are so thankful for the many people that have come forward to encourage us and bless us. And also for those that have walked this path before us and are now willing to walk it once again alongside of us.

Gratitude

As rough as the last few months have been—and as rough as Kohen’s rehabilitation and continued chemotherapy will be—we’ve been granted opportunities that remind us others have it far worse than we do. 

Like the little girl at the hospital (no more than two years older than Kohen) who has no legs below the knees and no arms beyond the elbows. Or like the parents who are spending weeks and months in the hospital waiting and hoping for an organ donation so their child’s life can be spared. Or the little kid across from Kohen’s room in ICU who passed away. 

All of these examples served to keep us from wallowing in pity for our own family’s plight, and they reminded me of the story about the man who lamented his lot in life because he was too poor to buy shoes, until the day he saw the man who had no feet.

This brings me to the subject of gratitude.

My wife and I are grateful beyond words for the mercy God has shown us throughout this ordeal, even during the times of greatest darkness and despair. It’s been a mercy we neither expected, nor deserve. 

In this spirit of gratitude, we wanted to take a moment to extend our gratitude to everyone who’s played a part in Kohen’s recovery so far. We are nowhere near done, but so many individuals and organizations have come together to assist us, it’s been a tremendous sight to behold. 

However, I’ve been fearful about doing this because I know I will leave someone out. It’s almost better to not publish this post than to unintentionally fail to mention even one person, but I trust if I neglected to mention you, you will forgive me and understand that our lives have been a whirlwind lately. There have been so many people who have helped and encouraged us, and in the chaos that has been our life for the past four-and-a-half months, sometimes our attempts at thanking each of you individually (and in this post) slips through the cracks. Please know our hearts and intentions are pure in this endeavor, and forgive us if we’ve forgotten you.

Thank you to all the family, friends, coworkers, and total strangers who have donated to help Kohen and alleviate some of the expenses of this ordeal for our family. The burden you have helped ease will never be forgotten.

Thank you to those who have taken on the task of watching our other children while we’re in Utah, as well as when Kohen and mommy are in chemotherapy and daddy has to go to work.

Thank you to those who have coordinated fundraisers on Kohen’s behalf, including Deacon Carlo & Debbie Managlia for hosting a fundraiser dinner, and Melissa Thomson for the “Kohen’s Warriors” t-shirt fundraiser. 

Thank you to those who’ve spread the word about Kohen’s plight, and thank you to those who’ve purchased the “Kohen’s Warriors” t-shirts.

Thank you to all the families who have provided meals for our family.

Thank you to all the doctors and nurses at Renown Hospital in Reno, Nevada who helped Kohen through his first 1/3 of Chemotherapy treatments.

Thank you to Dr. Jones and his staff at Primary Children’s Hospital in Salt Lake City, Utah for successfully removing the tumor from Kohen’s femur, and for the rotationplasty surgery that will allow him—with the aid of a prosthetic—to one day walk again, and live a normal life.

Thank you to the Ronald McDonald House Charities (our home away from home) and their wonderful staff for making our burden that much lighter while in Utah.

Thank you to all the families, groups, and organizations who made meals for all the families staying at the Ronald McDonald House.

Thank you to the Hartford, Connecticut SWAT Team for the gifts for Kohen (and making him an honorary SWAT member). 

Thank you to the Beverly Hills Police Department for the challenge coins

Thank you to Helping Hands and the Joshua Farler Foundation (both in Yerington, Nevada) for your donations.

Thank you to the Brooks Foundation of Reno, Nevada for your donation. 

Thank you to the Kiwanis Club of New Orleans for your donations.

Thank you to the Utah law enforcement agencies for all the swag, including the Salt Lake City Police Department, South Jordan PD, Herriman PD, and the Salt Lake City FBI. 

Thank you to Aimee Carr for all the hard work you did in procuring all the aforementioned Utah law enforcement paraphernalia.

Thank you to the Philadelphia schools for their gifts, cards, and encouragement from the students.

Thank you to the Northern Nevada Children’s Cancer Foundation in Reno for all the financial support as well as all the technical support to assist us in navigating these unfamiliar waters (that have now become all too familiar to us).

Thank you to the Paterson, Powers, and Grimm families for helping to make our holidays brighter. 

Thank you to the employee from the Moran Eye Center in Salt Lake City who bought my lunch when I got lost in her building.

Thank you to the Give Hope Foundation of Northern Nevada for their generous donation.

Thank you to the Tic Toc Diner, Mr. Roos, Acropolis Restaurant, and Spudley’s Super Spuds for the donation boxes in their respective Louisiana establishments.

Thank you to the Louisiana State Troopers (A & B) and the Nevada Highway Patrol for the police swag. 

Thank you to the East Jefferson Business Assoc., Living Water, CBD Wealth Management, A-1 Signs, CBT Construction, Entrepreneur’s Source, Elm wood Storage & Wine Cellar, Jefferson Parish Performing Arts, Bavarian Wealth Management, N.O.Vative Printing, and Jefferson Republican Pachyderm, all of the great state of Louisiana.

Thank you to the anonymous cop who sent Kohen his State of Ohio Combat Cross medal, stating that he wanted Kohen to have it because Kohen is “fighting harder than I ever did.” 

Thank you to Dawnbusters Kiwanis of Louisiana for their generous donations.

Thank you to the numerous police agencies throughout the nation and the world (too many to list here) who also sent patches, shirts, challenge coins, cups, and other swag for Kohen. 

Thank you to the members of Fellowship Bible Church of Carson City for their continued support and encouragement.

Thank you to Parkside Bible Fellowship Church and Logos Christian Academy, both of Fallon, Nevada, for their generous donations and delicious meals.  

Those I’ve mentioned above and those who I’ve failed to mention (please forgive me), have helped us more than you may ever know, and I well up with emotion when I consider how much Kohen is cared for and how much time, money, and resources people have sacrificed on our behalf. We couldn’t have done it without all of you.

When this trial began it was my intention to repay everyone who donated to help us, but it quickly become so much, so fast, that I’ve had to concede that there’s no way I could ever repay you all. However, during this ordeal our eyes were opened to the world of cancer sufferers that–to my shame–had been under our noses all along; we just never realized it. But now we are cognizant of this subculture of suffering, and as soon as we get through this we’ll begin doing our part to pay all your generosity forward for future families that will be enduring this ordeal . . . but who just don’t know it yet.

From the bottom of our hearts, thank you!

Happy Birthday, Kohen . . . Here’s Another Round of Chemo

Today is Kohen’s sixth birthday. It also just happens to be the four-month anniversary of the day he was issued crutches and advised he should no longer walk on his leg.

We’re extremely grateful to have returned from Utah in time to celebrate his birthday at home (and before the earthquake that struck SLC this morning). And we are only home in time because Kohen’s recovery was so remarkable. He exceeded expectations—spending less than a week in the hospital from day of surgery to day of release.

Kohen had an epidural installed on the morning of the surgery which remained in him for five days: from the day of surgery on Thursday, (03/05) till Monday (03/09). Once the epidural was removed he was transitioned to oral pain management (OxyCodone and Tylenol) and this is when we expected the proverbial “bump in the road” in regards to his pain/comfort levels.

But by Wednesday (03/11) it was clear he no longer needed the Oxy, and he was completely weaned off it by Friday (03/13). He even stopped taking the Tylenol on Sunday (03/15).

Do you understand the marvel of this? Kohen’s less than two weeks removed from major surgery (leg amputated, a chunk of femur cut out, leg reattached with multiple screws inserted into his pelvis) and he’s been off all pain medication since Sunday.

Throughout this whole ordeal Kohen was spared any substantial pain. This is nothing short of miraculous.

Tomorrow Kohen begins the next phase of this ordeal: the commencement of more chemotherapy—eighteen more weeks of it to be exact. But today we won’t think about that. Instead we’ll pause to celebrate Kohen . . . the boy who brings us such joy, who is wise beyond his years, who has matured beyond his age, and who has endured more than many adults do in a lifetime.

Happy birthday, Kohen. We cherish you and love you to the moon and back, to the sun and back, and always and forever.

“Man travels the world over in search of what he needs, and returns home to find it.”

– George Moore

Leaving the Hospital

Although he still has his moments, Kohen has progressed so well and has felt so good, he’s exceeded expectations (this kid is so strong and so special). Because of his rapid recovery, Kohen was discharged from the hospital on Wednesday (just six days after his radical rotationplasty surgery).

Below is a comparison from last Thursday night (just after getting out of surgery) and Sunday night (just three nights later).

On Tuesday Kohen got to use his walker for the first time since his surgery and he went quite a ways down the hall. He wanted to keep going but we finally had to force him to stop and rest. This boy is determined.

We spent last night at the Ronald McDonald House before heading out this morning. Currently we’re on the road and back in Nevada (just 300 miles outside Reno). We’re expecting to be home in a handful of hours but this ordeal is long from over.

Up next: Kohen’s chemotherapy reconvenes in a week and our new life of adjusting to Kohen’s disability begins now.