Meet The Rigan Family
Our Founding Story
It was 2019 and we just welcomed our new baby boy, Conor, to our family in May. We were still learning to navigate life as a new family of four. With Conor’s calm and happy-go-lucky personality, the transition was made easy from the start. We were busy enjoying all of his “firsts”, but by late November, at 6 months old, something had changed. Suddenly Conor wasn’t himself, but we could not figure out why.
At a holiday party, I remember reassuring friends and family that met Conor for the first time, “He isn’t normally so irritable like this.” “He must have a little bug.” “Maybe he didn’t sleep well last night”. But the more symptoms arose, the more worried our hearts became.
It took weeks of watching Conor give dazed off looks with bulging eyes, a few terrifying episodes of intense vomiting, and three visits to the doctor before we made it to the ER. The most suspicious symptom was that Conor’s head circumference had grown exponentially. At first, we had the ER doctor fooled. No one believed it was anything more than a virus. Conor would be symptomatic one moment and then totally fine in the next.
All it took was one CT scan and our world was instantaneously thrown upside down. The doctor’s words will forever be engrained in our minds.
The mass turned out to be a golf-ball sized tumor that was wrapped around Conor’s brain stem. Because of its large size, it cut off the flow of cerebrospinal fluid (CSF) in his brain and caused hydrocephalus. His off and on symptoms were caused by increased pressure, which can lead to permanent brain damage if not alleviated in time. Before we knew it, we were on an emergency plane ride to the nearest children’s hospital where he was rushed in to have an external ventricular drain placed in his brain. If it wasn’t for our angel of a pediatrician, who encouraged us to advocate for our son until a scan of his head was ordered, we likely would have lost our precious boy that night.
We woke up the next morning in a completely new world of childhood cancer. A place we never expected to be. A disease we had only heard about in the commercials on television. There was no going back to life as we knew it. Following a 12 hour brain surgery, the mass was confirmed to be a grade III Anaplastic Epedymoma. A highly aggressive brain tumor, which proved to be true over the last 5 1/2 years. Since Conor’s initial diagnosis, he has had a total of 7 tumors, all recurring in the posterior fossa (back region of the brain). Surgery has always been the first line of defense. In addition to the 7 tumor resections, Conor has completed 3 cycles of IV chemotherapy, 30 sessions of proton radiation therapy, 30 sessions of photon radiation, two separate clinical trials including Immunotherapy and Targeted therapy, 5 sessions of stereotactic radiation therapy and is now currently on an oral 5 drug Antiangiogenic Therapy. With each recurrence, Conor’s treatment options become more and more limited and the timing is absolutely critical.
“Your son has a large mass on the brain. There is nothing we can do for him here.”
All of this is only one journey of a little boy who’s had to fight with everything he has. Now stop and think of the hundreds of thousands of children who have been through their own unique battle. So many of our precious boys and girls are being left behind. And it is not by the teams of surgeons, doctors, researchers or parents who devote everything they have to saving our children. One of the largest obstacles are the disparities in government funding, specifically for childhood cancer research, that cause promising trials and new treatments to become delayed or shutdown. Those who are fighting or will fight this disease deserve MORE than the mere 4% (on average) of the yearly government funding for all cancer research.
Throughout our family’s personal battle we experienced an outpouring of love and generosity from family, friends, acquaintances, and even strangers around the country. We believe their unending support changed the outcome for Conor, who continues to thrive in every aspect of life. By the spring of 2024, Patrick and I felt it was time to “pay it forward” to the cancer community. We knew families, just like us, that had exhausted their child’s treatment options. We also knew so many people were actively seeking ways to help our family. We hoped that by utilizing our community’s generosity, we could make a positive impact on the lives of childhood cancer families and the doctors who fight beside them. That is where the idea for the More Than Four Foundation came in.
The More Than Four Foundation is dedicated to raising awareness of the devastating realities of pediatric cancer and the urgent need to fund cutting-edge research so that no child has to face the end of the road. Our children deserve MORE, MORE funding. MORE safe treatment options. MORE days out of the hospital. MORE time to just be a kid. And together we will make MORE than four happen!
-Sarah and Patrick Rigan