BMT Day +156: Words of Rememberance

Written and Shared by Julia Fisher, Luka's Mom, at his Celebration of Life

Luka Charlie Fisher — Our Guiding Light, Always Remember to Roar

We will begin with the most important voice, our sweet Maia Bee. When we asked Maia what she wanted to share with you all about her brother Luka, she quickly said “being happy and laughing.” And then even more quickly told us to call you all “silly chickens.” Which is a term of endearment. I promise.

And laugh they did — brother and sister. They put underpants on each other’s heads. They chased each other around the house in circles. They danced to Happy Feet. They demanded and devoured applesauce. They enjoyed swinging. They played trains. They shared a love of Paw Patrol. They went for walks in the car to find the Flying Pig in our neighborhood. They did flips over Uncle Isaac’s power wheels car. They made each other happy. They made each other laugh. Those little chickens.

But in all honestly, Maia wanted you all to know the following, “I love my brother Luka and he’s an angel now.”

An angel he is and loved for eternity indeed. We find comfort that he is not alone, welcomed by a choir of angels who also gained their wings. His big brother Maks, great-grandparents including Big Charlie for whom his middle name honors, great-uncle, cousin, his buddy Connor at Duke and baby friend Aron, Jr — and so many loved ones. Together, our angels guide us from above. With Michael Jackson, of course.

Someone recently asked me how Luka got his name. Honestly, it just came to us. Naturally, we were interested in a name with a Polish connection as that is my family’s heritage and Zach is an honorary Polish person. As Arsenal Football Club fans, we enjoyed Łukasz Fabinaski and Łukasz Podolski both players on the team at that time. So the name evolved to the North Carolina version — Luka. Only to find out after he was born that his name means, “light.” And guiding light he is.

Over the course of his nearly 21 months on this Earth, Luka’s light guided us as a family. We always said, “If he can do it, then so can we.” And, boy did he do a lifetime’s worth of impact in a short amount of time. Luka was an old soul born with a very rare disease that is thought to be unique to him, yet carried himself with the perseverance, beauty, and strength of a lion. And so he became #LukaTheLion. His legacy will live on – not just in his spirit through us remembering him, but also in research as his LuFi stem cells will live on forever to better inform how to treat people who may have conditions similar to him. The world is learning from Luka.

Just by looking at Luka’s adorable big brown eyes, bouncing curls, and beaming smile, as many people have said — for most of his life you would never know he had a necklace with over 48 feet of beads of courage representing just about every clinic visit, infusion, hospitalization, day in isolation, surgery, blood transfusion, PICU visit, bone marrow transplant, immobility, and so much more. Just the lab results, central lines, medications, injections, and need for a bone marrow transplant put in perspective how incredibly intense his condition was — but for Luka he made it into a positive, helping me clean his caps, clapping and saying “we did it” after an injection, sporting his beloved tube top, helping with putting the thermometer back, squeezing the manual blood pressure machine. He was brilliant. Seriously. At one point, he could basically take his own vitals and would march around the clinic looking for the computers which he adored oh so much. He knew how to use a stethoscope and where to put it on his heart because Dr. Philp taught him how every check. Luka truly was king of the clinic, rightfully so.

But Luka was more than how he met his medical challenges with a positive attitude. Luka possessed – and still does — a radiant soul. He found joy in just about anything – playing with, riding in, and watching race cars, making up sign language to nursey rhymes, climbing chairs and tables, stealing remotes, dancing with his bop bop move, celebrating goals being scored while watching the Premiere League, reading bookies and pointing to the words he heard me say, and his vast vocabulary accompanied by sign language that he created on his own. Beyond “more please” as nurses in this room may never forget, my favorites signs were associated with 5 Little Monkeys Jumping on the Bed and his “no, no” sign for the doctor, and head pat for falling off the bed. But perhaps the most beautiful sign represented the greatest gift of what a father can teach a son – to love and show love, as when Luka showed affection through hugs, he rubbed our backs or arms just like daddy does. Luka was truly remarkable at communicating which extended even to his toughest days.

It was only until the past two months that Luka was in such a battle medically that he wasn’t able to be himself completely, yet even then we all saw flashes of Luka, as miraculous as it was. In his last day, when doctors couldn’t believe how well he appeared given how grave his condition had become — Luka told us that he wanted to “go home in daddy’s car.” His love for lions extended to even those last days when he noticed one behind me painted on the wall. He said “lion,” and pointed to himself. And though most of his life was lived to the fullest, those last two months he fought the most courageous battle with an unspeakable level of maturity and dignity with grace. In his last act, he even waved “hello” when I explained Maks as an angel to him, and later after many prayers and us releasing him to Heaven – he pointed to himself and waved “bye bye.” Luka’s wisdom transcended this world and his guiding light will truly shine for eternity.

Luka’s light shined so brightly that he led the way not only in our family, but for the entire medical community. He was an enigma, a medical mystery. He had nearly 21 months on this Earth because of the immense dedication of UNC Hospitals, the nurses of 5 Children’s, the Pediatric Hematology-Oncology and Bone Marrow Transplant team, and his beloved Dr. Philip Roehrs. Truth be told, without the dedication, care, and expertise Luka received from Dr. Philip, his life would not have been so full. That fullness – and perhaps us bending the rules a bit — allowed Luka to roar and for us to have moments that we will remember forever. A brief visit to his grandparents Babcia and Dzadek in Washington, DC, two beach visits with his Gigi and Papa and the Fisher family, a quick stop in Asheville to see dear friends, a Durham Bulls game (that was before we knew the depth of his issues), skyping with his Aunt Dey Dey and Uncle Seth in France, supporting Maia in this church during preschool shows, walks in the stroller on the Duke Trail, going for a ride in the wagon with Maia watching her fly kites, spending time with daddy doing laps around the block as he held tightly to his push car’s steering wheel, going to a UNC-Duke women’s soccer game, accompanying Maia to playgrounds and the library, cheering us on as we completed the Running of the Bulls in his name, and visiting the YMCA being pushed around on the track during summer camp staff meetings. Many of you may remember Luka as “the gardner” with his crocs and hat covering him from the son as he helped pick up his big sister from the YMCA. Or, remembered by his vogmask after transplant with those beautiful eyes staring at you. His first birthday party surrounded by love, a cupcake tower, sliders, fries, and his big sister standing tall next to him.

Luka’s life was as full as it could be, and that’s truly because of the care he received at UNC. Perhaps it’s no coincidence that his delivery began as a UNC basketball game was being played steps away from the hospital, and he peacefully transitioned just as a UNC basketball game was played just steps away from the hospital. It’s true that Luka embodies the UNC fight song – I’m a Tar Heel born, I’m a Tar Heel bred –And when I die, I am Tar Heel dead. As such, Luka was loved deeply by not just his family and friends, but also by his team of health care professions at UNC who are the epitome of compassion as demonstrated by their outpouring of love for our lion throughout his life and especially in his last days. As evidenced by me saying as nurses, doctors, social workers, Chaplin, child life came to our room to pay their respects, “I never knew the Pediatric ICU could be such a peaceful place.”

But that’s just what our #LukaTheLion did — he brought us all together. His lion’s Pride became a circle of love not only for him, but for myself, Zach, Maia and our extended family. His secret Facebook group grew into the most compassionate community that I’ve ever had the honor to be a part of – and that says a lot as I’m a proud member of the Lakewood YMCA. Writing updates in that group to you all could have just been words, but because of you – it served as a lifeline that allowed for not only you, the reader, to have space to understand Luka, but for us to receive all the love and prayers you sent our way. So much so that even though we were in physical isolation, we were never – ever – alone.

Luka even brought the Fisher brothers — his father and two uncles together — one scarf at a time from concept to production to fame as the #LukaTheLion #ScarfChallenge made its way around the world. Support from Paris to Finland to Duke Children’s Hospital to Illinois basketball to religious statues to Half Marathons to Clemson, and so much more. Who else other than the Fisher brothers could combine forces to have you all, UNC’s Roy Williams, Carolina Panther’s Greg Olsen, and US Women’s Soccer Julie Foudy to all be in our lion’s Pride? So as you remember our #LukaTheLion, we ask that you bring your scarf to all the places you go that you wish Luka could experience — take a photo, share it, and roar.

Remembering is best by living in the spirit of that soul. So there’s no other way to carry on Luka’s legacy than by serving as a guiding light and roaring with pride. We hope one day to have a Luka The Lion Foundation where we honor our lion by helping other children and their families who face rare diseases and fight them with grace and limitless courage. We are beyond humbled that because of Luka’s extended lion pride, there is already over $5,000 in contributions in less than one day. As Zach said yesterday, “you better get to business!”

But beyond money, living in the spirit of that soul is something we can do at all moments. Consider this:

Monday morning, I read an article because the headline seemed promising. “What 3 words can make your life more fulfilling?” Naturally, I wanted to know. It was simple — “I am aware.” Followed by, “What am I aware of?” I keep thinking about this and find it to be a perfect way to articulate how Luka was able to be both a guiding light and roaring lion. He was present. Which leaves me with some passages and thoughts that have guided us through this transition which we can all do to remember and move through the healing process.

It is better to have loved and lost than to never have loved at all.

When you don’t know what else to do, then love.

In anything you do, try your best and give it your all – then know when to let go.

Most often than not we can’t see what people are going through, but we can always ask.

Live outside your label for there isn’t always one.

With grace.

And I quote from Autobiography from a Yogi by Yogananda, “Spiritual success comes by understanding the mystery of life; and by looking on all things cheerfully and courageously, realizing that events proceed according to a beautiful divine plan. For the disease of ignorance, the only cure is knowledge.”

I always felt like Luka was mysterious, even when he was in utero. It is only now that I think both he and I have found peace in this – especially as he is suffering no more.

So as you can see, in only 21 months, our Luka The Lion gave us a world and a heaven greater than the eye can see or the hand can touch. If you see strength in the three of us, it is only because we gained witness to the strength Luka endured his entire life. LukaTheLion is our angel — both a guiding light and roaring lion forever na zawsze.

So next time when you see darkness — be a guiding light. Next time when you see darkness — be a guiding light. Next time you feel weak — roar. Always remember to roar. You silly chickens!