Dykes is making a difference with her family’s storyMindy Dykes, who lives in Hudson with her family, works as the Community Outreach Coordinator for the Children’s Cancer Research Fund. As part of her job, she talks about her family’s struggles with her son Connor’s bout with brain cancer.
By: By Jace Frederick, Hudson Star-Observer
Mindy Dykes, who lives in Hudson with her family, works as the Community Outreach Coordinator for the Children’s Cancer Research Fund. As part of her job, she talks about her family’s struggles with her son Connor’s bout with brain cancer.
It is quite a story to tell.
When Connor was born, he had trouble with waking up choking and spitting up on a consistent basis. Mindy and her husband David were treating him for acid reflux, which doctors recommended, according to Mindy.
One night, following his six-week checkup, Connor began shaking and vomiting. Mindy said Connor was “inconsolable”. Over the next ten minutes, Mindy said his left eye had swollen shut and a huge mass of fluid formed on his forehead. They needed to get him to the hospital.
When they reached the Hudson Hospital, Connor was clammy and pale. His condition was so poor they immediately were transferred by ambulance to the University of Minnesota Amplatz Children’s Hospital, according to his story on the Children’s Cancer Research Fund website.
Once they reached the children’s hospital, Connor’s vital organs began shutting down due to pressure on his brain stem, said Mindy. A CT showed a large mass on the left side of his head. He had risky emergency brain surgery.
“(The surgeon) was very good at pointing out all the complications that were likely to happen,” said Mindy.
It was a scary time for the Dykes, who previously lost a child at birth.
The entire tumor was removed during a four and a half hour surgery.
“It was the size of David’s fist,” said Mindy.
Connor had numerous post-surgery complications, said Mindy.
“Each one you just handle it, triage, and move on,” she said.
Connor was diagnosed with Stage IV Multiforme Congenital Glioblastoma, the deadliest form of pediatric brain cancer, Mindy said.
To Mindy’s knowledge, there were only three or four others living with the disease at the time; most die in stillbirth.
Connor’s oncologist, Dr. Christopher Moertel, developed a treatment plan.
Connor endured rounds of chemotherapy and became the youngest person at the children’s hospital to ever receive a self-donated bone marrow transplant. “Connor donated enough marrow to complete four adult transplants”, meaning he has “money in the bank,” his mother said.
The most intense round of chemo involved “cleaning the slate” Mindy said.
She said they had to give Connor four baths a day to keep his skin from falling off. Gloves were needed to keep from coming into contact with the chemo medication.
“That was a nightmare thing,” she said.
In a few days Connor’s white blood cells began growing and he began to heal. He was home in fourteen days, a remarkably quick turnaround, according to Mindy.
Everything at home had to be sterile and safe for Connor. They kept friends and family informed through Caring Bridge, a social network that states its purpose is to allow people to easily post health updates and allow people to stay connected and provide support.
Family and friends were there to help the family, including David’s mother, who came up from Texas.
Connor is cancer free. He will be in remission for five years in July. The treatment he received has proven to be effective for seven to ten years.
“Every day is a gift,” said Mindy.
Connor suffers from hearing loss, some blindness in his right eye, and has some cognitive delays. He also still has a seizure disorder, which is controlled by medications. Mindy says those symptoms are not holding him back. Connor completes approximately eight hours of therapy each week.
“He’s thriving, he’s catching up, he’s learning,” said Mindy.
He enters kindergarten in the fall.
“He’s ready,” she said.
Mindy’s family had previously been active with the Children’s Cancer Research Fund, but she was not planning on working until Connor was in school. She came across the position of Community Outreach Coordinator on the fund’s facebook page.
“I saw the posting, and it just described me,” she said.
She started working with the organization last fall, she said.
“I love the organization. They’re very transparent, they’re very honest, and they’re direct. This is what we do. We fund research,” she said, “I get to reach out to other families that have pediatric cancer with kids that are going through it and I get to share Connor’s story.”
The organization does all of the fundraising for pediatric research done at the University of Minnesota. They deal with cancer and other life-threatening illnesses for children, said Mindy. Though the foundation has only 17 full-time employees, Mindy says they raise over $13 million a year.
“We’ve got a huge purpose,” she said.
For more information, go to www.childrenscancer.org.
Time To Fly 2012 is Saturday
The Children’s Cancer Research Fund will be holding the Time to Fly 2012 race against cancer this Saturday, June 30 at Harriet Island Regional Park in St. Paul.
Proceeds from the event go toward the research of pediatric cancer. The event features the children affected by cancer and their families, said the research fund’s Community Outreach Coordinator Mindy Dykes.
The organization benefits children with cancer as well as other life-threatening pediatric illnesses, according to Dykes. Along with funding research at the University of Minnesota, they fund programs such as the Butterfly Bear Program, designed to deliver free teddy bears to children with cancer.
Everyone is invited to attend the event. There are registration fees for the 5K and 10K run, though the walk is free. The event is free to attend, but donating is encouraged.
“Every dollar counts. Not everybody has a million dollars they can give, but everybody has one dollar,” Dykes said, “If everybody just gives a little bit to everything, then everybody’s needs can be met. That’s the whole concept.”
Hudson resident and Mindy’s son, Connor Dykes has a team in this year’s event. People can donate to “Caring for Connor” by visiting www.childrenscancer.org/caringforconnor.
Mindy Dykes expects around 2,000 people to be in attendance on Saturday.
“It’s overwhelming when you go into those crowds of people and you see all these kids with cancer,” said she. “It’s sad, but on the other side you see what needs to be done.”
“It’s going to be a fun, emotional day,” she added.
For more information on the event, go to www.childrenscancer.org/timetofly.