Kingsport Times News Sunday, April 20, 2014

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The unspeakable: Cancer second-leading cause of death in children 15 and younger

September 8th, 2013 2:00 pm by Marci Gore

The unspeakable: Cancer second-leading cause of death in children 15 and younger

Photo of Kellan Good, contributed photo

John Good says when he first learned his daughter had brain cancer, it took a while for him to process what the doctors were telling him.

“It didn’t hit me right away. It hit me later and I thought, ‘My child is one of the statistics,’” he said.

John’s wife, Sarah, says something like this only happens to other people’s children, not your own.

“It’s not one of those things that’s ever even on your radar or that you think might happen to your child. Of all the things that you think of, brain cancer is not one of them,” Sarah said.

About two and a half years ago, Sarah and John’s then-4-year-old daughter, Kellan, had been complaining of headaches and displayed several minor physical symptoms. Kellan’s pediatrician ordered a CT scan, and on March 22, 2011, Kellan was diagnosed with a tumor in her left cerebellum.

The following day, the Goods, who are both teachers at Dobyns-Bennett High School and live in Kingsport, traveled to Memphis. Surgery to remove Kellan’s tumor was immediately performed at Le Bonheur Children’s Hospital. The tumor was eventually diagnosed as medulloblastoma and the Goods spent several months at St. Jude Children’s Research Hospital while Kellan received chemotherapy and radiation treatments.

“This was one of those things that you’ve heard about, one of those ‘that’ll never happen to us’ kind of things,” Sarah said. “It’s an exhausting world. You’ve got a little kid who doesn’t understand what’s happening. They don’t understand why they don’t feel good, and parents who are terrified, and siblings who are just along for the ride. You’re trying to get the whole family acclimated very quickly to a life-changing event. As soon as Kellan was diagnosed, we were immersed in this world [of childhood cancer] very quickly and forced to learn exactly how little awareness there is and how little funding there is for childhood cancer.”

September is Childhood Cancer Awareness Month. This campaign puts a spotlight on the various types of cancer that largely affect children.

According to the American Cancer Society, childhood cancer rates have been rising slightly for the past few decades.

After accidents, cancer is the second-leading cause of death in children younger than 15. The types of cancers that occur most often in children are different from those seen in adults. The most common cancers of children include: leukemia; brain and other nervous system tumors; neuroblastoma; Wilms tumor; lymphoma; rhabdomyosarcoma; retinoblastoma; and bone cancer, including osteosarcoma and Ewing sarcoma. In very rare cases, children may even develop cancers that are much more common in adults.

Childhood Cancer Awareness Month doesn’t get quite the same amount of publicity that other cancer-related awareness campaigns do.

“It’s just not something people want to talk about. People don’t want to think about little kids with cancer,” Sarah said. “I honestly think it’s just something that people like to, not necessarily pretend isn’t out there, but they don’t want to think about it. We didn’t know Childhood Cancer Awareness Month existed before Kellan got sick either.”

“Communication is instantaneous today. There’s no good reason now why people shouldn’t know [childhood cancer] is out there,” John said.

“There are a lot of local kids who are going through this,” Sarah said. “I don’t think we ever realized how many. Between the Tri-Cities and southwest Virginia, there are a lot of kids.”

Cindy and Todd Ketron, also from Kingsport, faced a situation with their oldest son, Gabe, that was similar to the Goods. Just like Kellan, Gabe was diagnosed with medulloblastoma two years ago. He was 19 upon his diagnosis and spent the better part of 2011 in Memphis at St. Jude.

And like the Goods, Gabe’s mother, Cindy, wants people to know that cancer affects far more children than people realize.
“When it comes to your children having cancer, it’s a place you don’t want your mind to go to,” Cindy said. “I think a lot of people are in denial about how prevalent it really is.”

Since 2008, according to statistics provided by St. Jude, 125 children in Northeast Tennessee and extreme Southwest Virginia have been treated as new oncology patients. Of those, 38 children come from Sullivan County; three from Hawkins County; 24 from Washington County; 14 from Greene County; four from Unicoi County; and 10 from Carter County in Tennessee, and three from Lee County; two from Scott County; six from Smyth County; 10 from Wise County; seven from Washington County; three from Russell County; and one from the city of Norton, in Virginia.

There is even a St. Jude affiliate in our area to help treat these young patients a little closer to their homes. The St. Jude Tri-Cities Affiliate is located on the ground floor of Niswonger Children’s Hospital at 400 N. State of Franklin Road in Johnson City.

St. Jude is one of more than 200 research centers in the United States devoted exclusively to pediatric cancer research. These pediatric cancer research centers are known collectively as the Children’s Oncology Group (COG). The COG conducts a spectrum of clinical research and translational research trials for infants, children, adolescents and young adults with cancer. More than 90 percent of 13,500 children and adolescents diagnosed with cancer each year in the United States are cared for at one of these institutions.

Dr. Amar Gajjar is co-chair of the oncology department and director of the Neuro-Oncology division at St. Jude Children’s Research Hospital. He has played a central role in the research and treatment of pediatric cancer, introducing the concept of molecularly targeted treatment to tumor therapy.

Gajjar, who has 25 years’ experience working with pediatric cancer, was Kellan’s oncologist and has also been the principle investigator on key studies that have offered new insights into the treatment of brain cancer in children and says, thanks to research, great strides have been made in the treatments and therapies for pediatric tumors.

“Our understanding of these tumors has completely changed. We are now really not interested just in curing the ones we can cure, but we want to cure them with minimal long-term effects so these children can go on and finish their school, go onto college and enter into adult relationships and have gainful employment so they are useful, contributing members of society. If you look at a 20- or 30-year time line, we’ve made significant progress. There are still some diseases that we are working very hard to find a cure for, but, for example, when St. Jude opened its doors in 1962, the cure rate for acute leukemia was 4 percent — 4 percent of the children would be cured. Now, we’re seeing upwards of a 90 percent cure rate. This is a true testament to why places like St. Jude should exist,” Gajjar said.

Today, John and Sarah are very involved in fund-raising efforts for St. Jude.

“Compared to other cancers, there’s not a lot of federal funding that goes into childhood cancers. We have so much research going into curing adult cancer, but childhood cancer is a whole different ball game. It’s different kinds of cancer that little kids get. They generally don’t get the same kinds of cancer that adults get. And, I feel like we owe St. Jude. I think Kellan’s medical bills top $2 million at this point. St. Jude is amazing in that we have never seen the first bill for anything,” she said.

Despite the fact that both the Goods and the Ketrons have been through what any parent would consider a horrible nightmare, both families have fond memories of their time at St. Jude.

“You sit there in the main lobby of St. Jude and people are going through there all the time — patients and families, groups that come in to take tours,” John said. “You see some incredibly sick children — children that it’s obvious that moving hurts them, being awake probably hurts them. But it’s not a gloomy place. It is colorful and bright. There’s always stuff happening.”

“It’s not a sad place. The amazing thing about St. Jude is they really do make it fun. It’s so child friendly,” Sarah adds.
Cindy agrees.

“You go in sad, and for a parent who’s been there a while, it’s very easy to spot new parents because they come in crying,” she said. “But it’s almost like a carnival atmosphere when you go in. There are balloons. There are beautiful pictures everywhere. And the nurses and doctors, they just all have this attitude of, ‘It’s going to be OK. We’re going to take care of you.’ It just immediately puts you at rest.”

Both Gabe and Kellan have many years of scans and trips back to St. Jude ahead of them, but, for the most part, they are living relatively normal lives now. Gabe is 21 and, although he suffers from a decline in some of his cognitive functions and still has some medical issues related to the effects of his cancer treatments, he is attending Northeast State. Kellan is a happy, healthy first-grader, who, John and Sarah say, doesn’t exhibit any signs of what she has been through.

“We still have a lot of anxiety with Kellan because she won’t be declared in remission until she’s five years cancer-free. She, thankfully, has had very few deficits from her treatment. She has bounced back and is doing great at school and physically is most of the way there,” Sarah said. “She deals with a little bit of leg pain, but beyond that she really has had very few lasting side effects from her treatment, which is generally not the case with these kids. She’s an exception to the rule, that’s for sure.”

The journey the Goods and the Ketrons have been on with their children has taught them to look at life differently.

“We are so aware that life can change in an instant,” Sarah said.

“It sounds cliched, but I try not to take anything with my girls for granted,” said John.

Cindy says her family tries not to sweat the small stuff anymore.

“It helped us put life in perspective,” she said. “We truly do know what the big things are. The life of our son was so important that most everything else paled in comparison. It’s forced us all to live in the moment, to not think about, ‘Oh, in five years I’m going to do this or that.’ It’s really impressed upon all of us that we need to live and do what we need to do right now, at this moment in life.”

If you’d like to help raise awareness or funds for childhood cancer research, the St. Jude Give Thanks Walk will be held locally on Saturday, Nov. 23 at the Kingsport Town Center. Teams are being formed now, including Kellen’s own Kellen’s Crew.

For more information on how to join a team or donate, visit http://fundraising.stjude.org/site/TR/Walk/Walk?pg=entry&fr_id=8260.

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