Remembering Our Children

Kaycee’s Legacy 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 … Read more

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.

Cheyenne’s Legacy

Peyton’s Legacy 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 … Read more

Lydia’s Legacy 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 … Read more

Grayson’s Legacy 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 … Read more

Kenzie’s Legacy 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. Mackenzie was at Children’s Wisconsin weekly, sometimes even daily, … Read more

Ethan’s Legacy 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. Early in 2018, Ethan was diagnosed with Grade 3 … Read more

Collin’s Legacy 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 … Read more

Austin’s Legacy 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. … Read more

Colby’s Legacy 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. Colby once stayed after an appointment just so … Read more

Brenna’s Legacy 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. Brenna came to live with her mom and dad when she was … Read more

Luca’s Legacy 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 … Read more

Noah’s Legacy 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 … Read more

Braylee’s Legacy 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. While this diagnosis … Read more

Ian’s Legacy 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, … Read more

Max’s Legacy 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 … Read more

Carli’s Legacy 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. … Read more

Matthew’s Legacy 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. His … Read more

Sammy’s Legacy 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 … Read more

Joel’s Legacy The news of my son Joel’s diagnosis is still hard to absorb—let alone understand—and it’s been months since he died. 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 … Read more

Nova’s Legacy 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 … Read more

Liliana’s Legacy 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 … Read more

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.

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 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.

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.

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.”

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.

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?””

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

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.

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.

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.

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.

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.