His Final Bow

It was one year ago today. The excitement –and trepidation –are unmatched to this day. Would it be his greatest performance yet? Would he be able to enjoy this once-in-a-lifetime experience? Or might there be a medical situation on stage that turns this into a traumatic experience we would not soon forget?

Two weeks before, my therapist had offered up some of the most powerful and timely words of wisdom –You can focus on all of the things that could potentially go wrong, or you can shift your focus to all of the possibilities of what could go right. It was a choice; my choice.

Three months earlier, I had received an email from Ronald McDonald House NYC, where we had stayed with Kai during the second stage of his cancer treatment. They were inviting Kai to audition for the MSG Garden of Dreams Talent Show. We immediately replied “Yes!” and completed the application form in between the MRIs and medical appointments Kai had that very day. At that time, Kai was participating in an immunotherapy clinical trial due to tumor regrowth, that had us traveling back and forth from NY to Seattle every month. Between receiving the talent show invitation and the day of the actual show, Kai experienced a shunt malfunction, an in-flight medical emergency, and his fifth full-on brain tumor resection surgery. While the latter bought him a bit more time, its proximity to showtime coupled with the toll of the past six years of surgeries, radiation, chemo, clinical trials, a plethora of meds, and the disease it self had left him with nausea, balance issues,and dexterity loss, among other sequelae.The backstory video for the talent show was recorded the day after we flew back from Seattle following an unexpected shunt revision surgery.The obstacles were abundant and beginning to cast a dark cloud over what was supposed to be a shining moment.

A few weeks before the show, Kai’s fingers weren’t able to tickle the ivories as they typically did. It was obvious the connection between his post-surgery brain and his extremities was significantly impacted.I became nervous about whether it was still a good idea to put him on the stage at Radio City Music Hall knowing he was now struggling to play a song that he himself composed and knew like the back of his hand. Might that cause a meltdown on stage? What if there was breakthrough nausea in the middle of his performance? Or might his legs give in while walking across the stage? Or what if he lost his balance when he went to bow? I was mad at the universe for putting us in this situation –how could all of these challenges present themselves when he was just honored with the biggest opportunity of his life? An opportunity he so deserved!Instead of being excited for our amazingly talented son to do what he loves most in the world –play piano and share his gift of music with others, we were now overcome with fear and an impossible decision of whether to break our kid’s heart and cancel his performance for his safety and protection, or pop an antacid and cross our fingers as we allowed him to take the stage despite all of the what ifs.

The next week, we spoke with his doctors and nurses, his piano teacher, and the talent show team to devise a Plan B. Kai would be on strong nausea meds, he would have two escorts flanking him to walk on and off the stage, and he would switch to a song less complicated for his fingers.

The day of, as Kai was being introduced, the announcer pronounced his name wrong and said the name of the original song because the programs had already been printed. Vic and Ihad forgotten to inform Little Buddy of that change and Kai, who was also on the autism spectrum, could be thrown off his game with a last-minute change like that.Instead, he brushed it off, locked in, and performed his heart out like the champion he has always been.

Prouder of Kai we could not have been. Not only did he nail his performance on stage at a major venue in NYC, and not only did he perform his very own composition, but he pushed through the medical challenges of having had brain surgery just weeks prior, rolled and bounced with the last-minute changes, and soaked up every living moment of the experience.He even took time backstage to encourage a fellow performer whose nerves were setting in. Most people in the audience had no idea what it took for Kaito be there on stage that night sharing his gift and joy with everyone.And with all of this, still, the best feeling of the night for us wasn’t the piano-playing. It was seeing the proud smile on his face when he realized what he’d accomplished. It was the joy we watched him experience during the post-show meet-and-greet in the lobby when family, friends, doctors, nurses, and teachers congratulated him and gave him flowers. It was witnessing his shining moment and how it reverberated as waves of inspiration to every single person who encountered him that night.

April 8th, one year ago today, will not only be remembered by us as the day our Kai played his final performance and took his last bow, but is also synonymous with how he lived his life. He never gave up despite the numerous obstacles thrown in his path, he seized(and inspired us to seize) the opportunities that came his way, and he always gave everything his all...with a smile on his face!Kai –our Champion; our hero; our inspiration.Kudos, Little Buddy, ona job well done and a life lived with purpose, impact, and joy.#ForeverKai #PorSiempreKai

-Kari (aka forever Kai’s mom)