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.