“He lives life as fully as he can,” says the mother of three from Huntley, Illinois.
Diagnosed with a high grade glioma during an ultrasound before birth, Matthew has defied the odds by his survival. Yet that survival has not been easy: he’s had 11 brain surgeries, six rounds of chemotherapy, spent more than 800 days in the hospital (which translates into about half of his life) and endured 1,000 blood draws. Sue says he actually likes being in the hospital he’s been there so often and has made so many friends.
“He’s our miracle on earth,” she says. And that is no exaggeration. She says as far as she knows he is the only child born with this kind of brain tumor who has survived. Adults and older children have survived this diagnosis. She says less than four children are born with a similar tumor each year.
The devastating news came early. Hydrocephalus was diagnosed at 38 weeks of gestation. At just four days old, Matthew had his first surgery at Lurie Children’s Hospital in Chicago and Sue and her husband, Ben, were told that Matthew had a brain tumor that was taking up 40 percent of his brain and had prevented the right side of his brain from forming.
They were given two options: go home with Hospice or try chemotherapy, something which she says was not considered an option on an infant born with this particular type of cancer. They made the decision to fight the disease.
At two months, Matthew had his second surgery and began chemotherapy at four months. At six months, epileptic seizures needed to be addressed as they were severe enough to end his life. “We decided to take a chance again,” says Sue. “We stopped chemo for six weeks to address the seizures. A scan indicated that the tumor had shrunk.”
Matthew’s last chemotherapy treatment was August 14, 2012. But the surgeries have continued. Developmentally, he is about at the level of an 18 to 24-month child, but his Facebook page shows a personality that charms those around him.
The Erickson’s other two children – Nolan, 11, and Sophia, 7 – have had to spend a lot of their childhoods in the hospital fighting alongside Matthew. Sue says Sophia actually lost her hair twice due to the stress of the situation. “It hits them differently as they get older,” says their mother. “Nolan internalizes things a lot and worries about Matthew’s future.”
The effects of this brutal cancer on Matthew have been severe as he’s experienced vision loss, hearing loss, inability to use the left side of his body, problems talking and communicating and memory issues, to name just a few of the many deficits.
Sue credits a lot of people and organizations with helping their family, including the American Brain Tumor Association.
“There are not a lot of organizations out there that recognize a child after surviving cancer. The American Brain Tumor Association knows what it looks like. They know that the struggle continues long after treatment is over.”
Sue’s parents live with them, helping out with their other two children, and she credits a group of moms whose children had or have cancer as being a support that she depends on every day. She also can’t say enough about her husband, Ben, a high school teacher who had to take a second job to keep up with the complicated needs of their family.
But most of all, she is grateful for Matthew. “He is the most loving, energetic, funny, hilarious kid,” she says. “He can’t use words but through the hugs and smiles he just exudes joy.
“We‘ve learned that how we treat other people is the definition of love. We let the little things go and embrace the moment and the day. We know that in 45 minutes he could have a seizure and be in the hospital. Life can change at any second. You have to laugh as much as possible.”
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