Remembering Our Children

August Michael Johansen lived with a light that filled every room. In six years, he moved from silence to song, from hospital halls to the playground, and from signing “I love you” to speaking in full sentences. He loved Moana, Lightning McQueen, Legos, MagnaTiles, scooters, music, and delivering handmade notes like precious mail.

Kevin was a bright, good, and beautiful soul. From his earliest days, he was full of questions—constantly wondering how things worked and why the world was the way it was. That insatiable curiosity guided so much of who he was. He was a voracious reader, a creative force with Legos, a dedicated gamer in Minecraft, and a young artist who found joy in music and drawing.

In December 2016, Mason came home from school sick with flu-like symptoms. By Christmas, Mason was throwing up every day. After numerous doctor visits, he was diagnosed with anxiety. However, our gut told us it was something much worse. Mason wasn’t eating, was losing weight, and started to go numb on the right side of his face.

Evan lit up every room he chose to enter. He was a friend to everyone and was as funny as he was kind. He was the best big brother we could ever have hoped for. He loved school, especially math, engineering, and languages. Outside the classroom, he was deeply involved in marching band.

“Look, Mommy, me silly!” Four words that changed the course of Josh’s life on December 7, 2002 (the day after his 2nd birthday), when he stumbled into the kitchen, banging into the walls during a seizure. “Pediatric brain tumor,” the neurologist said. “It’s most likely benign.” Famous last words.

July loved life! He cherished every moment with his family and friends, and whenever he could, he loved playing football. He was diagnosed with diffuse intrinsic pontine glioma (DIPG) on October 12, 2023, when he was just four years old. After many grueling weeks of treatment at St. Jude Children’s Research Hospital in Memphis, Tennessee, July’s family chose to spend as much time together as possible.

Everleigh “Evie” Grace Brumfield, 5, finished her fight against DIPG cancer on Sunday, April 20, 2025. She was filled with joy and had a spunky, playful attitude in all she did. For the last eight months, she fought courageously in the midst of a terrible diagnosis, yet she still brought joy to everyone she encountered.

David was a 16-year-old accomplished U.S. Tennis Association junior player with the goal of becoming a professional tennis player someday. He lived in South Bend, IN with his parents Albert David IV and Pamela (Mozdzierz) Filer and their dog, Percy for 15 of his 16 years. In late 2021, the family moved to Orlando, FL for David to pursue his tennis aspirations. Four months after the move, David was diagnosed with Glioblastoma.

There’s so much to say about Madilee, but the confines of this page limit us. Her life overflowed with accomplishments, boundless love for others, and a powerful testimony. Though her time on earth was brief, she embraced every moment with purpose. From a young age, she radiated a glow that never waned, even as she courageously battled brain cancer. Madilee was an exceptional daughter, a perfect role model, and a loving big sister; she also cherished her pets dearly.

Short of stature but big of heart, Joe impressed all who met him with his kindness and good humor, especially around Christmas or birthdays. He excelled at finding the perfect gift, often spending months developing an idea or theme. Although he had a quiet demeanor, Joe could deliver exquisite zingers resulting in fits of laughter from the room.

Santi was born on February 8, 2016, sharing his birthday with his dad, Mauricio. Since his arrival, he filled his family with joy through his laughter and boundless energy. He grew up surrounded by love, especially with his brother Lorenzo, with whom he formed an inseparable bond. He enjoyed cycling, football, karate, and playing with his friends from the condominium, who became his second family.

Khamon was nine years old when he was diagnosed with diffuse intrinsic pontine glioma (DIPG), an aggressive childhood cancer that forms in the brainstem. Smart, kind, respectful, helpful, responsible, and dedicated, he had been born and raised in Cambodia before moving to the United States in early May 2023.

In early 2023, Allie started noticing some weakness in her left arm. We thought she had probably pulled something or strained a muscle. After some time passed and the weakness wasn’t improving—and even seemed to be getting worse—we took her to see an orthopedic surgeon.

Aimee was 11 years old when she was diagnosed with brain cancer. She had two brain surgeries, a shunt placement, different treatments of chemo, 30 radiation treatments, and an immunotherapy trial. After a year of all these treatments, our family was told that there was nothing else that could be done.

Liliana was diagnosed in April 2021 with Diffuse Intrinsic Pontine Glioma (DIPG) at the age of 2 ½ and passed away on June 17, 2023. She endured photon radiation under sedation five days a week for six weeks, took steroids that caused significant bloating and weight gain, and began taking a phase 1 clinical trial medication.

Layla Elizabeth So was a bright and compassionate young woman who touched many lives during her fifteen years. Born on April 8, 2009, in Pearl River, NY to her loving parents, Rizlene (Lisa) and Solomon So, Layla displayed an artistic spark and a keen intellect from an early age. Those closest to her recall her wisdom beyond her years, her gentle kindness, and her creative spirit.

Nova loved singing and dancing. It was a part of her daily life. She also loved sharing random animal facts with anyone who would listen. Her distinct giggle and smile were infectious. The beach was her happy place. She was the kind of girl you would want as a friend. She loved having fun, showed great compassion for people and animals, and always made the right choice.

Kaycee Rose Clark was born on March 3, 2014, after a prayerful time of asking God to bring her into our lives. She was the most perfect baby—she ate, slept, and was joyful. As soon as she began to talk, she would speak about God’s love for her. She thrived in everything she did and was active in the church her entire life, participating in Bible quizzing, plays, Sunday school, VBS, summer camp, and concerts. She loved life and lived it to the fullest.

Cheyenne Grace Nowland was born on March 15, 2024. She was the most precious baby girl, loved and adored by her parents, grandparents, aunts, uncles, and cousins. Cheyenne enjoyed going to church on Sunday mornings and Wednesday nights with her parents and especially loved spending time in the church nursery with her new friends.

Keanu, affectionately known as Kiki, will always be a radiant presence in our family. Kiki’s beautiful, infectious smile and giggles brought joy to everyone he encountered, including his dedicated medical team at NewYork-Presbyterian/Weill Cornell Medicine.

The first time Maksim was diagnosed was in 2015. He was almost 6. We had just started kindergarten—and it had only been half a year since we began a new life in the U.S. The diagnosis was medulloblastoma. Surgery, radiation, chemo. It was hard, but he did it!

Levi was our typical fun and loving 5 year old boy. He loved to play t-ball, going to school, traveling, and most of all, playing with Transformers. He loved his family as well and his friends. Levi was loved by many.

Peyton was more than just our son—he was a light in this world. From the moment he entered our lives, his sharp wit and boundless curiosity made every day an adventure. He was the kid who could make anyone laugh, the one who saw every challenge as an opportunity, and who cared deeply for others.

Gretchen was a vibrant 13 year-old girl who loved school, sports, reading fiction and hanging out with her friends. She was going to start high school and try out for the field hockey team in August 2023

Sammy was a cheerful and rambunctious soul. He mastered riding a pedal bike on his first attempt at age 3. He loved trains—whether wooden, electric, or real—biking, racing around playgrounds, jumping on trampolines, and playing with his big brother. Sammy was the picture of energy and health until shortly after his 5th birthday when he started to become increasingly fatigued.

At the start of his third year at Texas A&M University, the Midline Glioma, or DIPG symptoms, started just as he was ready to take on the world with grand plans to save the planet, one habitat at a time. He was going to do it alongside the sweet and intelligent young woman he loved, also a student at A&M.

Matthew was someone you think of as an overall wonderful person. A team player, and the most influential and kind son, grandson, brother, and cousin anyone could ask for. He knew how to be funny at the right moments, cared deeply about the people around him, and wanted them to be happy.

Braylee was a girl with a true heart of gold. She was a healthy and active 10-year-old girl who had played in a volleyball game the day before her diagnosis—a diagnosis none of us saw coming. Braylee was diagnosed with a very large, inoperable brain tumor: grade IV Glioblastoma Multiforme.

Our lives were forever changed on Christmas Eve of 2021, when our beautiful daughter, Carli, was diagnosed with DIPG—a rare and universally fatal tumor in the brain stem that afflicts an average of 200-300 children per year. Carli fought an inspirational battle for 18 months before receiving her wings in June of 2023.

On March 4, 2023, Ian Charles Romaine left his earthly body to live forevermore in the presence of his greatest hero, his Lord and Savior, Jesus Christ. Ian passed away after an 11-month battle with one of the most aggressive terminal brain cancers that afflict children today: Diffuse Intrinsic Pontine Glioma (DIPG). However, cancer did not for one second define his identity.

Jaedon was a different child, he was truly like no other child I have ever known. Even through his cancer journey, he was still telling people how Good God had been to him. He also said he wasn’t afraid to die because he knew where he was going and he talked to God all the time. Jae was so considerate he never got an attitude or mad at anyone he just endured.

Our son, Noah McEver, was 7 years old when we found out he had Stage IV Glioblastoma. Noah was a beautiful boy, inside and out. He was the most compassionate and considerate person we have ever known. He was always smiling—we can’t even remember a time when we didn’t see him smile. He cared so deeply for others.

Max was a lover of football, baseball, basketball, swimming, pogo sticking, stock trading, and anything that presented a challenge. He always had a bad joke in his back pocket. He lived his life in a kind, gentle, and gracious manner. Quite possibly the world’s best little brother to his siblings, Max still holds the title for the best hug-giver.

Brenna Jane Francis Corcoran was a 4-year-old with beautiful long eyelashes and big blue eyes. She fought DIPG with strength and bravery for 7.5 months. Brenna was the youngest of six children and the youngest child of Bonnie and Robert Corcoran.

Our sweet boy was the kindest, purest soul we will ever know. Everyone was a friend to him, and he cared for all. He was comforting and supportive, which was especially evident during his initial radiation treatments, where he quickly made friends with other patients.

Lydia Quinn Sharpe, born on March 26, 2016, was the youngest of Tara and Jonathan Sharpe’s three daughters. She was soft-spoken, thoughtful, and extremely considerate. Of all her sisters, she was the most willing to compromise so that other members of her family were happy. Tara and Jonathan referred to her as their “go along, get along” girl.

After diagnosis, Jace also loved – truly loved – the children he met with DIPG. He never asked why me? He asked why the little ones – the kids who haven’t played football under the lights, or skipped school, or kissed a girl. He asked his doctor, on the day he was diagnosed, “”how long do I have to make an impact before I die?””

Austin described himself as a “decent, cool dude.” He was the funniest and wisest person I have ever known, and he only lived for 13 years, 10 months, and 17 days. Austin was born with five brown birthmarks that, at the time, though extremely rare, seemed to be only a minor cosmetic issue.

Cecily was our sunshine. She lit up any room she entered. She loved her family and friends and took any chance to go do anything fun. . After radiation and chemotherapy her doctors told her that probably couldn’t happen. She told them that she would instead donate her brain and spine to research when the time came.

Our beautiful daughter, Mackenzie (Kenzie), was diagnosed with high-risk, metastatic medulloblastoma in May of 2018 at the age of seven. Over the next year, she endured two emergency brain surgeries, six weeks of whole brain and spine radiation, and seven months of high-dose chemotherapy.

Our Collin was a special little guy from the moment he was born. There was just something about him—about how he loved life and how he loved and cared for everyone around him. Collin made the lives of the people whose paths he crossed better. What made Collin stand out among everyone was his faith.

Grayson was full of life and loved being around people. His life was tragically cut short on 3/21/21, just two weeks after he turned 16. He was diagnosed with an aggressive pediatric brain tumor the month after he turned 14. He fought courageously during his 23-month cancer journey, maintaining a positive attitude despite the many awful side effects from the treatments he endured.

Born May 26, 2008, Ethan was a joyful, caring and fun-loving kid. A smile was almost always on his face. He was a peacemaker and enjoyed playing games together as a family. He loved his siblings, drawing, legos, the Yankees and his puppy Milo.

On November 13, 2020, just 5 short months after her initial diagnosis, sweet Lucy grew the most glittery, sparkly rainbow, beautiful angel wings that there ever has been. In the words of Lucy’s mom, Raegen, “Our hearts are shattered into infinite pieces, but we find comfort knowing that she is no longer suffering. Lucy’s battle may be over, but our war against DIPG wages on with fury.”

Luca’s laughter rang through our hearts and filled our home with joy from the day he was born. His chocolate-brown eyes sparkled with mischief, and he literally melted my heart and wrapped me firmly around his tiny finger. He was always smiling and loved being in the middle of the action. Luca loved his family and spent every waking moment with us.

Tanner Gillen was 13 years old when he was diagnosed with Grade 4 Glioblastoma. He remained charming, funny, and caring throughout his journey. Tanners’ greatest accomplishment is being the best son, friend, brother, dog owner, fisherman, golfer, and lover of history. He rested after a hard-fought battle on January 23, 2019, he was 14 years old.

Let me tell you about Charlie. From the moment he was born, he was an old soul. Watching and learning from his big sister Emily and his big brother Tim, wanting to be with them always. They were the fam squad, and best of friends. Charlie held onto moms fingers far longer than he needed, and was her little buddy.

Andrew lived life loud and with absolute exuberance. His laugh would fill the rooms and your soul in a way that would simply make you happy and proud to have this little man in your life.

As most of us are aware, when a child has a complex diagnosis, it affects the entire family and the entire family endures the journey. It was hard for our children to watch their sister fight for her life since she was just one. However, they adapted well to Lejla’s cancer diagnosis, and her health and treatment.

Heather was a happy and healthy kid. Just before her diagnosis she was running 5K races, competed in a Tough Mudder, and was doing P90X. She was a leader in her church youth group and volunteered to serve in many areas.

To know Michael Gustafson was to know laughter and ambition and brevity. Michael came into this world a leader. He was the first born twin (a fact he never let his sister forget). He shared not just the womb, but the same crib, the same bed and books and appetite for life with his twin sister.

To say that the loss of McKenna has been devastating is an understatement. Our ray of sunshine is gone, and the hole she has left is dark and deep. However, McKenna was not one to dwell on the negatives of life. Her joy was contagious and her heart was huge. Her impact on the world was evident from the out-pouring of support we received from her family and friends during her illness.