One fight after another
The first time Tammy Minckler learned that her son, Rory Shields, had cancer was when he was 25 months old.
“It had grown during gestation in his kidney,” Minckler said.
After six months of chemotherapy treatment, Minckler was counting her blessings that it wasn’t leukemia or a more fatal cancer.
“I took him home and grew his little hair out after the chemo,” she said. “He did well. We were lucky it wasn’t worse.”
But it got worse, fast.
The following year, 1987, Rory was diagnosed with Drash Syndrome, a kidney disease so rare he was only the 30th person ever to be diagnosed. And because of his previous surgery to remove the cancer, he only had one kidney.
“It was awful for him,” Minckler said. “He went on dialysis for 10 hours a day, seven days a week. And he just kept getting sicker.”
For much of that time, he was close to status one — meaning a patient has just 72 hours to get a needed organ. Finally, in 1991, he got his new kidney. While it wasn’t an ideal match, “it was the best we were going to do,” Minckler said.
Then, just a few days into his recovery, doctors discovered the boy was suffering from lymphoma caused by the anti-rejection medications that he’d been given so his body would accept the new kidney.
The doctors had never treated a transplant and cancer patient before, Minckler said.
At one point, “I got one of those midnight calls,” she said. “They said he didn’t look good and wouldn’t last long. I was so happy to see the sun come up the next day.”
Mysteriously, the lumps diminished, but six weeks later, a headache brought Rory back to the hospital, where a chance encounter on a elevator revealed to the boy and his mother that his problems were worse than they could have imagined.
This time, the boy had five — and would later suffer from seven — scattered growths in the center, side and exterior of his brain. It was cancer, again — CNS Lyphoma.
“Because of the transplant and aggressive nature of the cancer, doctors said he’d go into a systemic shutdown,” his mother recalled recently. “He would probably go blind, lose his hearing, ability to speak and swallow. They gave him six to eight weeks to live.”
Rory was just seven years old.
“You’d think after the third time of being told your son had cancer, you’d get used to it,” Minckler said. “But it was harder each time. I knew more about it and more about the treatments. The more you know about cancer the worse it is.”
With just a few weeks for him to live, Rory’s mom took him back to his home hospital.
A friend recommended she check in with a doctor who was practicing blood brain barrier disruption, which puts sugar water into the blood around the brain and then puts the chemo in, which allows it to get to the brain through the fluid.
Rory’s other doctors didn’t agree with the practice, but Minckler insisted.
Thirty-five days after his first treatment, five of the seven growths were gone, and the other two, located in the center of the brain, had shrunk. In a year, the cancer was gone.
With a 95 percent chance of remission, however, Minckler was still holding her breath.
The cancer never returned, but Rory still needed ongoing kidney transplants.
In 1995, his first kidney failed, and he received another from his mother. In 1999, his body rejected that kidney, and he returned to dialysis. In 2000, he received his third transplant and lost it 16 months later. Finally, in 2003, he received what doctors said was his perfect match.
Now, seven years later he is still going strong.
The fact that he is still alive is miraculous.
But survival has come at a cost.
“I am limited on what I can do both physically and mentally,” he said. “Due to the advanced nature of the brain cancer, it messed some things up in my head. To this day, I want to go to college, but I had a hard enough time getting through pre-college course. I’ll do my best, but it’s only worth so much.”
He is now 24 years old and works in Chesapeake at B.J.’s.
“I know I’ve come a long way, but I’m always told you can’t do this or that,” he said. “I’m not supposed to lift over 10 pounds. It’s eating away my bones. I can’t believe I’m feeling this way. I’m 24, not 64.”
Despite his continuing challenges, Rory is a survivor.
Both he and his mother have learned more in their lifetimes than many people every will ever even glimpse.
“Cancer blindsides you,” Minckler said. “It’s sneaky and awful. Cruel. It doesn’t care who you are, how much money you are, what you’ve done in life – even if you’re a child. What makes it even more difficult is that the treatments have to be bigger than the disease — and the disease is huge. We’re blessed it turned out like it did. Doctors don’t ask me how Rory is when they see me. They ask me if he’s still with me. I love telling them he’s doing great.”