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. The week before we found Levi’s tumor, he had been holding his head sideways, but it never seemed to slow him down.
Jaedon was a different child, I know all parents probably think that but he was truly like no other child I have ever known. He was born September 13th 2002 ( Friday the 13) Jae had a pretty normal child hood until he started having terrible headaches at the age of 4. Jae was so considerate he never got an attitude or mad at anyone he just endured. I Thank God every day for entrusting me with such a special child. It was a privilege and an honor to care for him. I am eternally grateful
Carli had a huge heart with an empathetic soul beyond her years. Whether it was shaving her head to donate her hair or making and selling blankets to donate proceeds to pediatric brain tumor research, she always looked for opportunities to help others when she could.
Max was a lover of football, baseball, basketball, swim, pogo sticking, stock trading, and anything that would present 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 worlds best little brother to his siblings and still holds the title for the best hug-giver.
During his 11 month battle with brain cancer Ian would constantly cry out to God in prayer for all of the children who have cancer. He didn’t pray selfishly for his own healing but for the healing of others. His desire was for no other child to have to experience the trauma and death from cancer. Ian’s tissue donation has been an answer to his own prayer as it will allow doctors and researchers just another opportunity to study a rare cancerous tumor that is inoperable and incurable at this time.
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 that was grade IV Glioblastoma Multiforme. While this diagnosis shook us to our core as parents, Braylee did not let it define her. She continued each day with a big smile and wanting to help others.
Heather’s story is not an easy one to tell, but this is where The H Life’s story began. 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. Despite her active and healthy lifestyle, Heather’s diagnosis left her and her loved ones with the unanswerable question: How could someone in such great shape be afflicted with such devastating cancer?
The answer is DIPG.
Unfortunately, Heather’s story is not unique. Every year, approximately 300 children are diagnosed with DIPG, a disease with a survival rate of nearly zero percent.
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. Cecily loved Disney, Broadway shows and concerts but her greatest love was her dog. She missed us all while away at college but was enjoying both the academic and social life at school.
She never complained about much so when she started complaining about headaches in the Fall of 2018 I was concerned. After a month of treatment for what we thought was a sinus infection we took a trip to our local emergency department. Our whole world was crushed when we were told she had a brain tumor which turned out to be Medulloblastoma
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. He loved shopping in thrift stores and online for gear, shoes and built his own lightsaber. He made custom lacrosse heads and loved watching Bob Ross. He never stopped moving, whether it was tricks on scooters, mountain biking, running, basketball and his favorite lacrosse. Charlie loved getting a root beer after games with Dad and having a catch in the backyard. He may have slowed down after diagnosis, but he found new ways to love life in bird watching, protecting the earth, being near the woods, flower photography and music.
Our son Noah McEver was 7 years old when we found out he had a 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 we didn’t see him smile. He cared so deeply for others, When asked about his days at school he would always talk about other kids and how they were feeling & we would discuss different ways he could be there for someone. He loved school and learning and he was that boy that would ask a thousand questions about how something worked. He become drawn to church and religion and it gives us such peace to know that he had faith even when we weren’t the best about showing up every Sunday and giving our children the faith education they deserve. He was the absolute best big brother his brothers and sister loved him and whenever Noah walked in the door they always showed such love and excitement to see him.
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. He remained positive and hopeful and continued to practice his sport throughout his treatment.
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 to be in the middle of the action. Luca loved his family and spent every waking moment with us. He enjoyed cutting the lawn with Papa, gardening and cooking with Momma, playing piano, making blanket forts and playing soccer with his big brother, reading books, cuddling, taking selfies and baking with his sisters. For four short years, Luca was the picture of health, never once requiring medical attention for illness or so much as an ear infection.
Brenna Jane Francis Corcoran was a 4-year-old with, beautiful long eye lashes and big blue eyes, she fought DIPG with strength and bravery for 7.5 months. Brenna was the youngest of 6 children, she was the youngest child of Bonnie and Robert Corcoran. Brenna came to live with mom and dad when she was 6 months old and was officially adopted on April 16th, 2021, when she was 3 1/2- years- old. She loved Disney, princesses, unicorns, make-up and motorcycles. She loved hanging out with her 3 sisters, brother, mommy and daddy. Her older siblings encouraged her to be extra sassy and she always made sure her voice was heard. You could find her on the t-ball field, in gymnastics class and also dressed ready for dance class. Brenna loved school and spending time with her friends. Her 3-year-old- nephew, Christopher, was her best friend. She loved going to the beach but had to have a pool on the beachside because she would not get in the ocean. Her smile will always be contagious and never be forgotten. She was truly a Warrior Princess.
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. This was especially evident during his initial radiation treatments where he quickly made friends with other patients. Colby even stayed after an appointment once so that he could be with a fellow patient while she rang the bell after her last treatment because she had no family present. Another time while leaving the emergency room he made sure to wave at every child he passed on the way out. Colby loved lacrosse, BattleBots, Legos, Pokemon and his siblings very much. He was always ready with a bad pun or an even worse dad joke.
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 people’s lives, whose paths he crossed, better. The thing that made Collin stand out among everyone was his faith. Collin had a love of Jesus, and a personal relationship with God that was above all things in his life. That relationship with Our Heavenly Father not only saved Collin, but it brought people to God-some for the first time, and others it brought back to God.
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. It took him a little longer than most but he learned to walk and talk and soon was cracking everyone up with his hilarious personality. His jokes were always accompanied by the best facial expressions and sometimes only the adults really got them.
He is so missed and we love him so much. There is a big hole in our family now, but during the last minutes of his life we told Austin he will always be a part of our family and he always will.
On August 5, 2003, after 6 months of bed rest, McKenna Claire Wetzel was born. Big sister, Jordan, was excited to welcome her beautiful, blonde, green-eyed sister to the family. Years flew by, and the household was filled with the typical chaos that having two working parents and active children bring. Soccer games, gymnastics classes, music, vacations, we managed to do it all. McKenna grew into an extremely vivacious, bright, and athletic little girl with an infectious grin and a big heart. She brought joy to all those around her.
In mid-January of 2011, we were told that McKenna had a mass on her brainstem, the worse possible place for a tumor.
Andrew approached everything with the diplomacy of a charismatic world leader, the strategy of a professional chess player and often displayed the fiery of a hurricane while somehow still maintaining the whimsy of a 4-year-old boy. That description collectively summarizes how Andrew approached cancer.
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.
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 Anaplastic Ependymoma. He was strong and courageous and faced cancer with determination. After his second relapse, it was evident that he wouldn’t be with us much longer. He chose to face death head on and lived life to the fullest. His faith in Jesus Christ grew during this time and he was excited to go to Heaven. He left this earth December 20, 2020. “
Tanner Gillen was 13 years old when he was diagnosed with Grade 4 Glioblastoma. He remained charming, funny, and caring throughout his journey. Tanner loved art. His favorite piece The Great Wave off Kanagawa. He was a bit of a renaissance man. He loved Frank Sinatra and Gloomy Sunday by Bille Holiday. Tanner was quick witted and never at a loss for words. Tanners’ greatest accomplishment is being the best son, friend, brother, dog owner, fisherman, golfer, and lover of history. He remains quite simply, my greatest gift. He rested after a hard-fought battle on January 23, 2019, he was 14 years old.
Even though Mackenzie died at just ten years old, her impact during her short time here will be felt for decades to come. Anyone lucky enough to have known our daughter will tell you that she embodied love. She often helped collect toys for fellow cancer patients at Children’s Wisconsin and served with me at blood drives so people understood why blood donation was so important for those receiving treatment. Mackenzie’s love for her fellow humans is what inspired her dad and I to want to donate her tumor tissue. We know Kenz is looking down and cheering us on as we continue to advocate for pediatric cancer research, and we could not think of a better legacy gift than to give the gift of hope for a future where childhood cancer no longer exists.”
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.”
Every parent of a child diagnosed with cancer always remembers their last “normal” day. The day before their life changes forever.
Lydia, born 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 one who was most willing to compromise so that other members of her family were happy. Tara and Jonathan refer to her as their “go along, get along” girl. What she wanted most was to just be with her family. If you were going somewhere, Lydia would drop whatever she was doing just so that she could go along with you.
Grayson was full of life and loved being around people. His life was tragically cut too 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 so courageously during his 23 month cancer journey and kept a positive attitude, despite so many awful side effects from treatments he endured. Before cancer, Grayson enjoyed all kinds of things.
One morning in August 2017, we woke up, it was a Sunday, and I only know that because I called our palliative nurse and I could hear the church choir in the background. Something wasn’t right with Lejla and after a home visit and some calls to our team, we headed to Children’s. We spent the next two weeks in the hospital, we had guests, Lejla’s birthday party, laughs, tears, and moments of tough decision making.
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. We think this is why, even as a young teenager, he would often wish to hold your hand or touch your arm when he sat next to you at the table or on the couch.
Jace lived every day with the mantra “I can’t die, I’m busy.” 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?”