Brain Cancer - Connor's Story

"Something in me right then said, 'He's going to make it.'"

Meet Connor Dykes:

"When Connor woke up after surgery, he opened his eyes and he looked at me, and I instantly knew that would be one of my favorite memories from my entire life."
- Mindy Dykes

Connor Dykes, nearly 3 years old, is a ball of energy. From the moment his mother Mindy gets him up at 5:30 in the morning, until his father David puts him to bed at night, he’s nonstop motion-- laughing, tearing around, and alternately playing and fighting with his older sister Joselyn. In other words, he's a lot like any other kid his age.

That Connor is alive at all is miraculous.

When he was 6 weeks old, Connor's mother went out with a friend. David was at home hanging out with the kids. Connor suffered from acid reflux, and that night it was particularly bad. He was restless, couldn’t eat and was throwing up all night. Strangest of all, he would cry whenever David turned on the lights. David was sitting in the dark with his baby, finally asleep on his lap, when Mindy came home. "He's not right," David whispered.

The moment Mindy turned on the light, their lives changed forever.

The entire left side of Connor's head was swollen. They immediately drove to the nearest hospital in Hudson, WI. "We say it calmly now," says David, "but we were frantic."

Mindy took Connor, while David drove Joselyn to her grandmother’s house. During the trip to the hospital, Mindy became more and more alarmed. Connor's cry was becoming weaker; he was clammy, shaking and pale.

The doctors at Hudson had Connor transferred by ambulance to the University of Minnesota. When they arrived, Connor was sent to have a CT scan. When the doctor came back out, Mindy immediately knew that something was horribly wrong. "She had that ashen look, and ER doctors don't get that look very often." She sat Mindy down and told her that Connor had a brain tumor the size of an adult fist.

As they waited for David to arrive, Mindy talked with the neurosurgeon, who informed her that the surgery was extremely risky, and it was likely that her child would not survive. By the time David arrived, Connor's vital organs were beginning to shut down. They had no choice--allow the surgery, or lose their son for sure.

During the operation, Mindy sat in disbelief; David, in anger. The Dykes' first son, Christopher Gabriel, had been stillborn, and David felt like he was living the nightmare over again. "I loved him, but I put these walls up, because I was going to have to plan this... putting another boy in the ground."

Connor, however, had other ideas.

Four and a half hours later, the neurosurgeon came into the waiting room to tell the Dykes that he had successfully removed the tumor, and that Connor was stable. Within 10 minutes of David and Mindy entering the recovery room, Connor opened his eyes and looked at them. For David, this was nothing short of a miracle. "Something in me right then said, 'He's going to make it.'"

However, the Dykes' fight was far from over. Three days later, Connor was diagnosed with a rare Stage IV Multiforme Congenital Glioblastoma. Their pediatrician, Dr. Christopher Moertel, Clinical Director, Pediatric Brain Tumor Program, knew that the protocol for Connor's treatment needed to be innovative; they were delving into uncharted territory, as most children with this type of tumor die in childbirth.


Connor went through five months of chemotherapy, and then he became the youngest person ever at the U of M Children's Hospital to receive a self-donated bone marrow transplant. Dr. Moertel thought it would take several tries to collect enough bone marrow from him, but again, Connor surprised everyone. Astonishingly, after just one pass, he donated enough marrow to do 4 adult transplants.

"Connor had something to do," says Mindy, "and he did it."

The bone marrow transplant was a success, as was the chemotherapy, and now, almost two years later, Connor is considered cured. Mindy and David thank the strides in medical research for their son's life. Mindy says, "Ten years ago, Connor wouldn't be here. They wouldn't have had the technology to do a CT scan 30 seconds after he entered the ER. Then there's the big stuff, the bone marrow transplant, the right combination of chemotherapy drugs."

The Dykes never hesitated to sign off on any research Connor's doctors wanted to do. Part of his tumor is now in California; part of it is at Mayo. Like most parents in their situation, David and Mindy don't want any other families to have to go through what they did. "In five years I hope he's still teaching things and helping doctors figure out how to help kids," says David.

Though the last two years were in many ways terrible, the Dykes are aware that they've gained friends and experiences they wouldn't have if Connor had not been sick. They also have learned to appreciate every moment with their children.

Today, Connor has some developmental disabilities, but he is progressing daily. He wears hearing aids due to hearing loss from the aggressive chemotherapy, but this too is showing signs of improvement. Also, one of his optic nerves was severed because of the tumor, so he has partial blindness in his right eye and has to wear glasses. "His sister just says it makes him look like Harry Potter, so that’s okay," says Mindy with a laugh. For the Dykes, these are very small prices to pay to have their son happy and healthy.

"I had this dream, like all parents do, that one day we would watch Connor go off to school on a school bus like every other kid," says Mindy holding back tears. "That'll be starting in December! If you saw his CT scan and what is left of his brain, and what is missing, I don't know how he does the things he does. He’s is progressing so well and so fast. He's just A-MAZ-ING!"



-http://www.childrenscancer.org/stories-of-hope/kids-stories/connor.html

You can read Connor's story here: http://www.caringbridge.org/visit/connordykes


GO CONNOR!