Hope and loss

For the 10,000 children who are diagnosed with pediatric cancer in the United States each year, good health is anything but assured.

More than 80 percent of children with cancer will now survive for five years or more, but prognosis depends on the type of cancer, how far it has spread, and how well the child’s body handles treatment.

Cancer remains the second most common cause of death in children under the age of 15 (after accidents).

While huge strides have been made in the most common types of childhood cancer, many have no known cure.

Some families will receive a terminal diagnosis and know that the end is coming. Others face death despite a positive prognosis.

But what every family of a child dying from cancer has in common, up until their child’s last breath, is the hope for a miracle.

‘Their battles were fast and fierce’

Lora and Dave Krum of Lehighton lost two sons, Dylan and Gavin, to complications related to cancer treatment in 2010 and 2012 at the ages of 15 and 14.

“The only thing worse than being told that your child has cancer, and watching them suffer through treatments and side effects, would be to experience the death of your child due to this illness,” said Lora.

The end of both brothers’ battles came quickly, and while the family was still trying to process the initial diagnosis.

“We always describe their battles as fast and fierce, since each of them experienced death only two months after being diagnosed,” she said. “To remain by your child’s side, desperately pouring out your love for them, knowing it’s the last time you’ll ever be able to express this directly to them, is another source of trauma that parents face.”

Perhaps the greatest loss from cancer is tearing a child’s future away from his family, his community, and the many people he might have touched as he grew to adulthood.

Krum described both boys as “mighty little warriors” from the moment they were born. Both were born prematurely and spent six weeks in the NICU. As they grew older, the boys grew close. Both loved the color blue, Pizza Hut, and family trips to the shore and Disney World.

“We had a wonderful family life that was always filled with love, fun and intentional times spent together,” she said. “Dylan and Gavin were truly each other’s best friends. Although they were born 2 1/2 years apart, they were often mistaken to be twins.”

Both inherited the family’s love of music.

Dylan played trumpet. He had a deep passion for classic cars, electronics and computers, and family members predicted that he would excel in the field of computer programming.

Gavin was a drummer. He loved collecting model trains and attending train meets as a child, and as he got older became fascinated with Transformers. He was convinced that he would someday be employed as a Hasbro toy designer.

“They both would have been wonderful at anything they would have chosen to do,” Krum said.

“Dave and I lost so much of our lives and our futures when they left this world.”

‘You make the best choices that you can’

When 7-year-old Jacob Grecco was diagnosed in 2011 with gliomatosis cerebri, a rare type of brain tumor with no known cure, his mother Stacey Gravina’s first question was, “What do we do now?”

“You’re terrified, and I think you start grieving immediately when you get a terminal diagnosis. You start thinking about him dying,” she said. “My husband tried to keep me focusing away from that, and tried to focus on the fact that he is still here.”

While there was no cure for Jacob’s type of cancer, there was a protocol they could follow to improve the length and quality of his life. He was given six to 12 months to live. The family agreed to begin oral and IV chemotherapy as well as radiation.

“You make the best choices that you can based on the information that you have at the time. It really wasn’t a choice for us,” she said. “The other thought in your head is, what if they do find a cure while he’s being treated? What if something comes out that can help him?”

Throughout the next year Jacob fought bravely. While he knew that he could die from cancer, he never showed fear.

“He was a champ,” she said. “I just never got the feeling from him that he was really scared, that he was worried he might really die. He seemed so much older than his years.”

For the first 11 months, doctors were impressed by Jacob’s response to the treatment.

“He was tired a lot, but he never really lost his extreme energy and his love for life. He powered through everything without really complaining.”

The family also used alternative therapies, including supplements and sound waves (Rife therapy), all approved by his oncologist. But nearly a year after his diagnosis, an MRI showed that the cancer had grown. Doctors decided to stop conventional treatment.

The family heard of one last treatment rarely used in the United States, hyperthermia, or heat treatments, and began researching its merits. Hyperthermia is used extensively in Germany. They decided to fly Jacob to a German cancer clinic to undergo treatment.

“I couldn’t not try it. I often wonder if we should not have done it, because it was the end of his life. We didn’t realize how close we were to the end of his life,” Gravina said. “If it was going to help him, it was way too late in the game.”

Jacob earned his wings while in Germany undergoing treatment.

“I wonder if he should have been at home, instead of halfway across the world. But I know that, even more, I would have been wondering if we would have tried. I think that would have been a bigger regret,” she said.

Jacob was 8 years old. When he died, the world lost a loving, caring boy who enjoyed playing with and role-playing superheroes of all types. The energetic boy had even dressed up as Superman and Batman for radiation treatments. When asked to come up with a name for a cancer fundraiser, he dubbed himself “Jacob ‘The Hero’ Grecco.”

“As a parent, you’re supposed to protect your children and keep them safe. There was nothing that we could do,” she said. “You feel guilty, like you’ve failed him, even though logically you know that it’s not true.”