Peter and Victoria Brown stood across from the Capitol building getting ready, looking over the list of members of Congress they planned to visit that day.
First, they would meet with an aide to Sen. Mark Warner (D-Va.). Then it was on to a meeting with an aide to Sen. Barbara A. Mikulski (D-Md.) and a sit-down with Rep. Chris Van Hollen (D-Md.).
In more than six hours of meetings with nearly a dozen people, the Browns repeated the same talking points they now know by heart: Cancer is the leading cause of death in children; cancer is diagnosed in almost 13,500 children and adolescents each year; one of five will die of it. And Congress should appropriate $30 million in research money, they would say, to save these children. As Peter Brown told Van Hollen, “In a different world, maybe my son could have survived.”
Peter and Victoria Brown of the District were among about 100 parents from across the country who visited the Capitol on June 22 as a part of the CureSearch cancer foundation’s Reach the Day event, in which parents and families of children with cancer lobbied for support.
This is the Browns’ new reality, one without the little brown-haired boy they call Mattie.
Matthew Brown was 7 when he died in September, after a nearly two-year battle with bone cancer. His parents have created a foundation, the Mattie Miracle Cancer Foundation, in the hope that in providing help to other families dealing with childhood cancer, they can find answers, and maybe even solace.
Childhood cancers have spawned a hodgepodge of efforts, from research organizations invested in finding treatments or a cure, to neighborhood walks raising money for families. The Browns hope that their foundation, which will support research on the disease that took Mattie’s life, can help health-care providers better understand what families are going through and offer families support to deal with cancer’s emotional and physical toll.
Some scoff that it’s too lofty an ambition, and history doesn’t bode well for their cause. Most family-initiated foundations tend to fizzle after time, amid waning support. But the Browns say their mission is not just a way to assuage their grief. Peter Brown likens it to starting a business; Victoria Brown says it’s like raising a child. For them, it’s a way of trying to find a reason behind Mattie’s death.
“We can’t change what happened,” Peter Brown said. “We can learn from it and do something to change it. That’s my intent: to try and find some meaning in this.”
Matthew Brown was described by his father as the “picture of perfect health” — a skinny, athletic 6-year-old with a quick smile and his mother’s eyes. He was at a tennis camp in the summer of 2008 when he complained of an achy right arm.
Victoria Brown thought it could be a sprain, nothing major, and took him to the pediatrician. An X-ray revealed a problem: a tumor on his upper arm. That day, over the phone in the hospital waiting room, she was told it was osteosarcoma, a type of malignant tumor typically found in adolescents. During another X-ray, technicians accidentally captured part of his left arm in the scan, where they found another tumor. Doctors ordered a full-body scan; they found four tumors.
“At that point, our world came crashing down on us,” Victoria Brown said.
Matthew started treatment at Georgetown Medical Center. Victoria Brown stopped working as a counseling professor at George Washington University. Her husband, a vice president for a telecommunications company, shuttled back and forth between work and the hospital.
Bad news kept coming, but they were steadfast in their contention that Matthew would survive only if they kept up an aggressive approach to treatment. His hair fell out, his rosy complexion was reduced to a ghostly pallor, his eyes had pink rings circling them.
Over the next 15 months, Peter and Victoria Brown slept only a few hours per night, communicating mostly through text messages — even when they were in the same room, because the noise bothered Matthew.
“You find superhuman strength,” Peter Brown said.
“I almost feel like Pete and I were Marines,” Victoria Brown added. “I don’t know how we did it.”
The cancer continued to spread, first to his lungs, and within months it had metastasized to most of his major organs. By summer 2009, doctors told them that the cancer had taken over his body. “It flipped from how do we get him to survive to how do we make him comfortable before he dies,” Peter Brown said.
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Ten months have passed since Matthew’s death, and Peter and Victoria Brown are still processing life without him. The couple, who met as undergraduates at Union College in Schenectady, N.Y., found a community of friends that rallied to support them. They say they tapped into a reservoir of strength they never knew they had. They found that their 21-year relationship was strong enough to weather their son’s cancer and death, which isn’t the case for many couples.
Yet they also found that, as cradle Catholics, their faith in God would be diminished. And for two self-motivated achievers, they learned that the future was largely beyond their control.
Peter Brown said the past year has made him more appreciative of his life and the people in it.
Victoria said: “I’ve seen the worst life has to offer, in seeing my son die, and the best, in seeing the human connections.”
After sharing her story on Capitol Hill, another mom — a woman Victoria had never met — embraced her.
In some ways it’s easier now to be around other parents who are going through, or have been through, the same thing. The Browns no longer have new tales of parenthood to share. Their friends’ children are growing up, while the Browns are left only with memories.
“Although we are no longer trapped in an ICU unit, the isolation is in our head,” Victoria Brown said. “Even if we are in a room full of people, we no longer share those daily routines. Our futures will not look the same.”
The Browns hope that Mattie’s Miracle will allow other families to avoid that isolation. They also hope it will help fill the void cancer left in their lives.
“We don’t have anything tangible of Mattie. In essence, the foundation — it’s a bridge, a connection to Mattie,” Victoria Brown said. “It keeps his memory alive. It’s a deep connection to our son.”
