HEROES

Our mission is inspired by our son Owen. Owen battled Stage 4, Metastatic Neuroblastoma.

Both MYCN amplified and ALK amplified with an adrenal gland tumor, bone involvement and also bone marrow involvement.

By funding research for precision medicine, creating awareness and supporting families, we hope to change the lives of children battling cancer.

On February 4th, 2023 Carmen was diagnosed with stage 4 high-risk neuroblastoma. After dealing with her symptoms for 7 months and multiple doctor’s appointments, her diagnosis was not what was expected. After all, I don’t think anyone ever expects their kids to be diagnosed with cancer. But cancer doesn’t discriminate, it’s not fair.

Emilia was diagnosed with high risk, stage 2 neuroblastoma on October 17th, 2023. She is ALK and MYCN, which is the most difficult type of Neuroblastoma to combat. Since October, Emilia’s been through 6 rounds of aggressive chemotherapy, an 8 hour resection surgery, and 12 rounds of radiation. She is currently in her immunotherapy phase of treatment and recently finished round 4. Emilia and her family will be heading to NYC in September to consult for the vaccination trial.

Evelyn Grace Jackson was diagnosed with Stage IV MYCN amplified, ALK mutated neuroblastoma in July of 2021 when she was 20 months old. The mutations her cancer carried made it an aggressive form of disease but opened the door for targeted therapy and molecular monitoring – something rare in pediatric cancer care. Evelyn’s course of treatment was very hard. She spent more time in the PICU than any child her age should. But no matter where she was, she was LIVING life to the fullest.

Garrett will be 3 August 16th; a week after his first birthday he was diagnosed with stage 3 high risk neuroblastoma. Initially we discovered he had a 19cm mass in his abdomen, within six days of diagnosis we started his first rounds of chemo. After 14 days in the hospital we were able to go home after what seemed like an eternity, and before we knew it we were headed back to C.S. Mott 3.5 hours away from home after only 48 hrs at home Garrett had developed a neutropenic fever and this would be the norm for us for the next seven months.

McKay was diagnosed with Stage 4, High Risk Neuroblastoma–a solid tumor cancer of the sympathetic nervous system–in February 2014 when he was just 3 years and 9 months old. His symptoms leading up to his diagnosis were not “screaming” cancer, but were common symptoms that could be brushed off as any childhood illness. However, when they were persistent, red flags started to rise. He battled Neuroblastoma for 17 months before he finally conquered cancer and obtained NED (No Evidence of Disease) status in July 2015.

On March 28 2023 our 18 months old daughter Raegan was diagnosed with AML acute myeloid leukemia. We had noticed she wouldn’t walk about a week before and she was COVERED in bruises, we had taken her to our primary care and were referred to a pediatric orthopedic doctor and hematology. We had an appt with ortho and was misdiagnosed with toxic synovitis ( inflammation of the hip), I had missed the call from hematology due to work. The orthopedic doctor had prescribed Tylenol and motrin for Raegans pain and if it wasn’t better in a week we were to bring her back. A few days shy of a week I noticed a small purple dot on her inner thigh we took her to our local ER, we did blood work and was transferred to Toledo by 3am. By 9am we had our diagnosis and started treatment.

Just before River turned one, she fell and bumped her cheek on the coffee table, resulting in a goose-egg. Concerned, her parents advocated for her when the swelling persisted. Unfortunately, she developed an infection, leading to sepsis and an eight day hospitalization. After tests and antibiotics, she returned home to recover, celebrating her first birthday and overcoming what her family thought was the worst. Six weeks later, the bump on her cheek grew larger, prompting further medical attention and quickly turning into more advocating. Eventually diagnosed with alveolar Rhabdomyosarcoma, River began chemotherapy promptly and responded well.

Rowen was diagnosed with stage 4 High risk neuroblastoma on his 2nd birthday. Rowen has undergone extensive treatment, since November 2022, & is still on his treatment journey. He recently relapsed in March 2024, & is completing his second journey on his new road map of treatment.

Wesley is a very energetic 10 year old boy who loves baseball and soccer. On a regular Saturday soccer game a year ago May, he suddenly couldn’t catch his breath in the middle of his soccer game. That following Monday we took him to his peds doctor where we thought we were looking at sports related asthma. The only sign that it may be something else was his coloring had been off and he was extremely pale. Monday night our lives changed with a single phone call from our emergency after hours team at our peds doctors office telling us to take him immediately to the hospital where we would have to give him several blood transfusions because his blood count was dangerously low.

Ziko fought a brave and hard battle. He was diagnosed with pancreatic acinar cell Carcinoma when he was 10. He got sick when he was 9 but the cancer had not shown up yet. It took doctors 10 months to finally find what is wrong. They were shocked that they had a child with pancreatic cancer. The type of cancer he had there is 25 known cases in the world in children. He was the 2nd child in the United States to ever get it. He fought hard with 12 rounds of chemos, a whipple surgery, most of his pancreas was removed. He had to be on enzyme replacers for the rest of his life. 28 rounds of proton radiation. And chemo pills. He was doing well when he relapsed in July of 2023.