Leo’s life was full of love and courage. He loved buses, Goofy, Grover, jumping, running, dancing, cuddles, and his family.
Leo’s story is also one that includes many battles.
Just before leo was born, a scan revealed hydrocephalus (water on the brain). He was delivered early and had a shunt placed on his 3rd day of life.
Weeks later after Leo was having trouble staying awake and feeding, a bleed was found in his brain and a tumor was suspected. After a wait and watch period, a large tumor was found on his brainstem when he was 3 months old.
When a failed biopsy made him very sick, his mom and dad decided to try a round of “bandaid” chemo to try to ease symptoms. Genetic testing revealed that Leo was a carrier of the SMARCB1 gene which meant his cancer was ATRT.
Leo began to feel better and they decided to proceed with a chemotherapy protocol called ACNS003. Scans miraculously revealed that Leo’s tumor was melting away from the chemotherapy and by the end of high dose chemo it was gone.
His team and several other doctors from around the world felt like Leo would not be cured from this cancer without radiation. Leo completed 28 rounds of radiation just before his first birthday.
Leo had almost 3 years cancer free and was very good at doing what little boys are best at, keeping his parents very busy. He loved to tease his dog by taking a cracker up and down and all around the house and would squeal with happiness when being chased. He loved to throw golf balls anywhere and everywhere, but especially at his dad’s golf club. He loved to walk around the neighborhood and waved hi to anyone that passed by with incredible enthusiasm. He loved to play with his sister on the little rollercoaster in their backyard. He loved spending time with his cousins and was always in the middle of the action.
During this time, Leo battled seizures and had to have a skull expansion as a result of being shunted so young. He was insanely brave and lived so enormously each day.
In January of 2024, when Leo was 3, a mass was found on his kidney during a routine surveillance ultrasound. He had surgery to take out the tumor and some of the surrounding kidney tissue. It was an MRT or malignant rhabdoid tumor, which was implicated with the same SMARCB1 gene that had caused his brain tumor when he was an infant. He went through radiation again and 4 rounds of chemotherapy before his mom and dad felt like Leo’s body couldn’t take anymore.
Leo learned to jump during this time and it became one of his most favorite pastimes…he loved his trampoline and was able to get some air on the sofa as well.
He was again cancer free for almost a year. One morning just before his 5th Birthday, Leo had an episode that looked like a seizure and was taken by ambulance to the Emergency Room. A tumor was seen, again on his brainstem, and subsequent scans revealed two new brain tumors and two on his spine.
His family made the difficult decision not to put Leo through anymore surgeries. He had radiation to try to control the symptoms of the tumor and went home on hospice.
Leo passed away on August 12, 2025 in his parents’ arms.
Leos legacy is a legacy of Love and Strength. He is immensely missed by his family every second of every day.
