ST. GEORGE – Childhood cancer is largely out of sight and out of mind until “it hits you,” St. George resident Travis Stafford said. Stafford’s youngest son was diagnosed with cancer in 2014, and while the family recently celebrated the boy’s having no trace of the disease for three years now, they have made it a personal crusade to spread awareness of childhood cancer.
They are not alone in their experience or endeavor.
A tale of two families
“No one wants to think kids get cancer, but I think once you realize kids do get cancer, and a lot of kids get cancer, it hits you,” Travis Stafford said as he sat with his wife, Jen and their 10-year-old son, George, wedged between them as they spoke to St. George News.
George was diagnosed with a Wilm’s tumor, a kidney-based cancer, just after his 7th birthday. For the next nine months George underwent treatment at Primary Children’s Hospital in Salt Lake City and Dixie Regional Medical Center in St. George.
“We walked into DRMC on July 28, 2014, and George rang the bell signaling end of treatment on April 24, 2015,” Travis Stafford previously told St. George News. Due to the treatments, George missed the bulk of the second grade, with the exception of the last three weeks, he said.
Since then, George has been subjected to occasional medical checkups to see if any trace of the cancer has returned. Thus far it has not.
The cancer is not considered to be in remission until there has been no sign of the disease for five years.
Another St. George family that has dealt with childhood cancer is the Barretts.
In early 2017, then 15-year-old Fox Barrett was diagnosed with fibrosarcoma, a type of bone cancer that claimed nearly 6 inches of the fibula in his right leg and left him unable to naturally lift up his right foot. He is able to counter this with a special brace that lifts his foot for him as he walks.
“Last year we were only home 84 days out of the year,” Brett Barrett, Fox’s father said as they reflected on the time spent going to and from St. George to Salt Lake City for treatment. “The rest of the time we were either traveling or in the hospital.”
The beginning of Fox Barrett’s diagnoses came over a phone call Feb. 6, 2017, and was soon confirmed to be cancer. The surgery to the remove the tumor took place May 18, 2017. The results of a recent scan showed him to be free of any trace of the disease.
“Now we see it a lot more”
Both the Staffords and Barretts had little awareness how common cases of childhood cancer could be until they become a part of it.
“Before this I could tell you of one youth that had cancer because it happened to be in our (extended) family,” Brett Barrett said, adding, “being up at Primary Children’s we ran into so many people from St. George who take their children up there. So now we see it a lot more.”
Little things like the mention of certain medicines or medical conditions would be like trigger words for the family and show them just how wide the scope and touch of cancer truly is, Brett Barrett said.
“We really had no idea how many kids had cancer, especially down here where kids aren’t treated for cancer,” Jen Stafford said. “Most of them have to go up to Primary Children’s, which is what we had to do. … So you don’t see the presence of cancer here because it’s all done up there.”
Children diagnosed with cancer also tend to be kept out of public places like schools and stores due to the compromised immunity they experience while undergoing treatment.
“You don’t see them a lot because they have to be protected from germs or they end up in the hospital,” Jen Stafford said, adding that when George got a fever once, he ended up in the hospital while another child would be fine after taking some Tylenol.
According to the Children’s Cancer Research Fund, more than 15,000 children a year – around 42 a day – are diagnosed with cancer.
Only around 4 percent of federal funding given to the National Cancer Institute goes toward child cancer cancer research.
Following the end of George’s treatment, the Stafford family created the “George Says Cancer Sucks” campaign as a way to bring more awareness to childhood cancer, as well as ways people can help through donations, or potentially receive support themselves.
“If anyone ever felt they needed to to talk to somebody because their kid has cancer, I would love for them to contact me,” Travis Stafford said. “… Just being able to talk to somebody who’s gone through it; it’s that comfort of ‘I know where you’re at.’”
While it is a nightmare for any parent to have a child develop a life-threatening illness, there is also the added stress it can have on the relationship between the parents, according to both the Barretts and Staffords.
Brett Barrett said he’s seen examples of the mother staying at the Ronald McDonald House in Salt Lake City while her child undergoes treatment. At the same time the father remains at home due to work obligations in order to keep the bills paid and possibly look after their other children.
“(The dads) have to stay at home. They have to keep working,” Brett Barrett said. “There’s a lot of anxiety and guilt over letting (the family) down and not being there for them.”
This, in some cases, can create a gulf between the couple that could result in divorce, which both Travis Stafford and Brett Barrett said they have seen occur. In the case of their families, however, both men were able to take work with them.
“The only reason it worked out is that we were both able to be there the entire time,” Travis Stafford said, referring to being at the treatments in Salt Lake City. “We weren’t separated, we were able to take it as a team.”
“It’s not a luxury a lot of cancer families have,” Jen Stafford said.
Mothers of children undergoing cancer treatment have a great network of support, Fox’s Barrett’s mother, Isabel Barrett, said. Part of that support has taken the form of a Facebook group where the women share their stories and offer mutual support.
“You share a bond with those ladies,” Isabel Barrett said.
“There’s no real support for the dads,” Brett Barrett said. “You know, we’re men. We don’t like to talk about anything. There’s definitely a need for (a support group).”
Travis Stafford said he’s willing to lend an ear or a shoulder and encourages any father of a cancer child to contact him through the GeorgeSaysCancerSucks.com website.
Spreading awareness and giving back
“It’s not a want, it’s a have to,” Travis Stafford said of the family’s crusade to raise childhood cancer awareness.
They do this through the website, as well as through t-shirts, stickers and occasional public events.
In observance of Childhood Cancer Awareness Month last September, George and his family attended a St. George City Council meeting where Mayor Jon Pike read a resolution recognizing the month’s significance.
As for the Barretts, they are inviting individuals and families impacted by childhood cancer to be a part of the St. George Lions Dixie Round-up Rodeo parade set for Sept. 15. They also want to see gold ribbons, the symbol of childhood cancer awareness, on as many trees, arms and car antennas as possible that month.
Those who wish to join the Barretts in the Dixie Round-up Rodeo parade can contact the family at email@example.com.
Part of spreading awareness includes letting people know how they can help.
On the Staffords’ website, they have links to organizations people can donate to, like Primary Children’s Hospital, Ronald McDonald House Charities and the Utah chapter of the Make-A-Wish Foundation
“We really try to focus on giving back to the Ronald McDonald House and to Primary Children’s directly,” Travis Stafford said.
While someone can give a financial donation to these organizations, one of way the Staffords give back is by donating food for the families staying at the Ronald McDonald House while their children are being treated.
Last November, during a trip to Salt Lake City for one of George’s post-surgery checkups, the Staffords packed the family truck full of food for the pantry at the Ronald McDonald House. They also use the Amazon Prime Pantry service to send food.
“I can’t donate thousands of dollars, but I can donate a box of food every week,” Travis Stafford said.
And while a donation can help, both the Staffords and Barretts encourage finding out who could benefit from financial help locally.
“If I have a choice of taking money and giving it to CureSearch.org, or giving $100 to the local family who needs gas money to get up (to Salt Lake City) and back, it’s going to them. It’s going local,” Travis Stafford said.
Money can also go to car maintenance, food and other necessities a family needs while traveling back and forth, Brett Barrett said.
However, for some local families, they may not have to travel to Salt Lake City as much as they used to.
New pediatrics wing at Dixie Regional offers child oncology treatment
As a part of its expansion, Dixie Regional Medical Center is opening a new pediatrics wing at its main campus on Foremaster Drive.
The new wing brings services over from the hospital’s old 400 East campus, while also expanding them to offer some treatments for child cancer patients locally versus requiring a trip to Primary Children’s Hospital.
“We are lucky enough to have a partner in Primary Children’s Hospital and our pediatricians are able to work hand in hand with our oncologists to provide some of the treatment locally that used to only be provided at Primary Children’s,” said Jason MacPherson, nurse manager of pediatrics.
An example of those services includes same-day chemotherapy treatments, he said.
“If a child can have it the same day and go home after, it’s something that they can have done here and not have to drive to Primary Children’s to receive,” MacPherson said. “We’ve been developing that relationship with Primary Children’s and whenever a child can have those procedures, we work together to do them locally.”
And life goes on
“I’m doing pretty good since I got done with the chemo and cancer and all,” George said. “I started back where I left off before cancer – sort of.”
Life post-cancer isn’t quite the same as before, Travis Stafford said. In the three years since George was declared to have no trace of cancer, there’s been a level of anxiety over the possibility it may come back.
That anxiety increases as the time between post-surgery checkups gets extended. A checkup every three months turns into twice a year or longer. During that time, the cancer could come back and may not be caught until the next checkup rolls around.
“When you’re off the chemo, it’s like they took the security blanket off your feet,” Fox Barrett said. “Now, if something is growing back, nothing is killing it.”
Though the anxiety of the checkups and the hyper-awareness that can be triggered when the child feels sick, life for the Staffords moves forward.
“Day-to-day life is back to normal, really,” Travis Stafford said, though he admitted there were still things he doesn’t like his son doing because the cancer left him with one functioning kidney. “I’m kind of a little more super-sensitive, a little cautious, but you still have to let them be kids.”
“Life is as normal as it can get, but it’s still after-cancer life,” he said. “It can never go back to the way it was before.”
Looking back, the Staffords see some of the positives associated with the ordeal.
“We made amazing friends, we learned a lot, and now we can share what we know with other people. And if I’ve got two dads down here who I can help, (it’s a) win. We did it,” Travis Stafford said with a thumbs up.
For the Barrett family, they’re still adjusting a year after Fox’s surgery.
“There really should be self-help books for this,” Brett Barrett said. “What is normal? We’re discovering it.”
St. George New reporter Markee Heckenliable contributed to this story.
Editor’s note: Brett Barrett works for Canyon Media, the parent company of St. George News.
Copyright St. George News, SaintGeorgeUtah.com LLC, 2018, all rights reserved.