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.

Rotationplasty

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.