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.
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.
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.
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.
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.
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.
Kohen continues to recover from his surgery and chemotherapy treatments remarkably well, and he’s remained in good spirits through it all. This kid never ceases to amaze his parents with his strength, humor, and endurance.
On his most recent return home from chemotherapy treatment, Kohen was happy to receive a reptilian hug on his arm thanks to his older brother, the snake wrangler, who has an uncanny knack for finding the slippery serpents.
Kohen also got the opportunity to watch Ginger and Oreo being born. Ah, the miracle (and gross) process of live birth.
On Wednesday, Kohen finally got casted for his new prosthetic leg (which he should be receiving within a week or two). We are all so excited for him, but probably not nearly as excited as he is since it’s been five months since he last walked.
Also on Wednesday, Kohen received a needle in the arm for more blood tests, and then had a tooth pulled (as if he hasn’t already gone through enough). But Kohen wasn’t the only one who had to deal with a little pain this week.
Last Friday one of Kohen’s older brothers had an accident requiring a trip to the Urgent Care. While playing outside (running on a shed roof where he shouldn’t have been), Asher fell and landed on the head of a screw. It tore through his jeans, lacerating is leg just above the knee. Fortunately he didn’t fall off the roof itself.
After ten sutures he was all fixed up. Now he not only gets to brag that he never cried once during the whole ordeal (although he did almost pass out and throw up), he also gets to brag that he received more stitches than his brother, Calvin (who got nine stitches a few years ago after stepping on broken glass).
Asher has recovered well since the incident one week ago, and is expected to get the stitches removed in a few days.
Although it comes with inherent risks, out in the country, past the city limits sign is the truly good life. And in spite of all the injuries (and hard work), we’re grateful for where God has us, and we wouldn’t change it for anything.
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.”
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.
Currently it’s raining here in Salt Lake City, but inside the hospital the sun is shining because even though we are only three days removed from Kohen’s rotationplasty surgery, he is progressing remarkably well—even better than we anticipated at this stage.
Below is an x-ray image of the screws that have been permanently inserted into Kohen’s little body (getting through the TSA on flights will be an even more fun experience now). These screws are holding what used to be Kohen’s lower femur, securely into his pelvis.
Today he had his first physical therapy session and it went very well. He even got to toss a ball with his daddy from his bed.
We are expecting to have his epidural removed tomorrow and begin transitioning him to oral pain management.
In spite of everything he’s gone though the past three and a half months—and what he’s currently enduring—Kohen remains in good spirits.
We still don’t have a solid date yet of when he will be released, but we are getting closer. And with this little boy’s toughness, tenacity, and courage, we may end up being ahead of schedule for his recovery.
Finally, here is a short video of Kohen enjoying some blueberries . . . just because.
Yesterday morning we got up before 5 AM Utah time (4 AM our time) and headed to the hospital. Kohen got checked in, his port was accessed (see below image), and we said our goodbyes as he headed off to anesthesiology shortly after 7:30 AM. The surgery itself began at approximately 9:30 AM.
While the surgery was taking place, Courtney and I left the hospital to grab lunch, then returned where we waited the remaining hours to be reunited with our son.
Besides needing two blood transfusions, Kohen did very well during his surgery. And not only was the tumor successfully removed from his leg, the rotationplasty was successful as well.
When surgery finally concluded around 8:30 PM, we got to see our precious baby boy again.
Now the long process of healing, rehabilitation, and physical therapy begins (all the while receiving eighteen more weeks of chemotherapy).
We are hoping that recovery over the next week goes well so we can be home in time for Kohen’s sixth birthday that will be upon us in less than two weeks.
Today marks three months since we discovered Kohen has cancer. That day (that feels like three years ago) started out like any other day, but has since turned our world upside down, changing our lives forever.
And now the next big step is upon us: the surgery date has been scheduled.
March 5th–just 13 days before his 6th birthday–Kohen will receive rotationplasty surgery in Salt Lake City.
The surgeon performing the rotationplasty is Dr. Jones. Here is an article mentioning him from a previous rotationplasty operation he performed on a little girl, and below is an illustration of what will happen:
Courtney and I were learning to adapt to the chemotherapy treatments as they’ve become the “new norm” for us, but now our boat is about to be rocked again.
I would be lying if I said this procedure didn’t terribly frighten me. I had successfully walled it off since learning about it–not giving it much thought as I already had enough on my plate to think about and to worry about. But now we find ourselves less than three weeks away from the surgery.
The gravity of what will happen next to my little boy (and how it will forever change his life) has finally gripped me. Especially when I add the fact that Courtney and I will be away from our other children for an entire week or two (depending on how things go).
Kohen’s siblings are struggling with what is happening to their brother, and having him and their mom gone constantly for chemotherapy treatments has weighed heavily on them. Now, with this surgery, they will be without their baby brother and both parents for up to two weeks.
To get a better perspective on how life with osteosarcoma and rotationplasty will be for Kohen and his family, I encourage you to take a little time and watch the following video of a boy who found out he had osteosarcoma on his tenth birthday, and who later underwent this radical surgery.
Courtney sent this video to me well over a month ago but I couldn’t bring myself to watch it until now. I’m glad I waited, because even now I sobbed through most of it.
More updates on Kohen will follow as the surgery date approaches.