Orange goes gold: A look at personal anecdotes, funding and trends of pediatric cancer
Everyday, children are fighting for their lives against a terrible disease, usually without sufficient resources. In honor of all currently battling, survivors and angels lost to pediatric cancer, let’s change the circumstances for the strongest kids.
A childhood lost to cancer
Childhood is the time where one would make the most joyful memories, like running around with siblings, building close relationships with teachers and peers and going to school dances and events with friends. However, this expectation is not always a reality for some people, including senior Trinity Russell, who spent four years of her life battling childhood cancer.
First diagnosed with osteosarcoma, a rare form of bone cancer, at 10 years old, Russell’s childhood was different than most and left a dramatic impact on her life. After relapsing four times, the cancer recurring in her lungs, the senior has learned how to fight harder than ever.
“Any pain pill or steroid you can think of, I’ve had. I’ve had just about every type of chemotherapy because my cancer has come back so many times. I was in constant pain and very tired all the time. Always sick to my stomach and I’d have very low to no energy,” Russell said.
While going through extensive treatment, her parents had to sit through an extreme mental battle of their own: watching their young daughter go through treatment after treatment.
“I always feel bad that she lost her entire childhood to cancer; that was really hard for me,” Heidi, Russell’s mom said.
Many might not know the extent of her family’s actions to make sure she had the best resources and chances of beating osteosarcoma, even when, at certain points during her treatment, everything looked hopeless.
“Children’s [Hospital] said there was nothing they could do, but my parents would not take no for an answer. We went up to Cleveland Clinic, and eventually my lung cancer shrank and hasn’t come back since. I have a very excellent extremely smart pediatric oncologist; he saved my life,” Russell said.
The physical impact cancer has left on her is tremendous, but has never stopped Russell from being active and pursuing whatever she sets her mind to.
“Physically, I have a prosthetic leg, but it doesn’t stop me from doing anything I want other than running. I am very active,” Trinity said.
When hearing that cancer is gone, one might think that the journey just ends there, but for many people ringing that prized bell is just the beginning of a new chapter of life. This new life typically includes repeatedly coming back for tests and scans to make sure that the cancer hasn’t relapsed, as a survivor is at a higher risk to develop other cancers in their lifetime.
“I go every year for CT scans at the Cleveland Clinic and get an echo for my heart,'' Russell said.
The mental effects of cancer are the most overlooked, usually because once a patient is physically healthy, the medical attention lessens. Sometimes, this is the most exhausting part of recovery and a difficult hurdle one would have to jump.
“Mentally, I have to check myself sometimes. I’ve lost a lot of friends to cancer, and I was very fortunate to make it out alive. It makes me very sad, and I feel guilty sometimes about surviving,” Russell said. “So, sometimes I live my life for all of us”.
Design by Athena Heckman
Trends, treatments and awareness
The degrees and types of cancers in children are broad, and they all affect each child differently. However, basic trends can be seen within different types of pediatric cancers, and new treatment research is occurring every day.
According to the National Cancer Institute, among children and adolescents ages 0 to 19, in the United States, the most common types of cancer are leukemias, brain and central nervous system tumors and lymphomas.
“We have not seen a rise or a pattern in the numbers of pediatric cancer in the past several years. In Ohio, in particular, the department of health keeps track of new cancer diagnoses so that if there were ever a significant increase in the number of new diagnoses, we would know about it,” Pediatric Oncologist at Nationwide Children’s Hospital Keri Streby said.
Pediatric and adult cancers differ most in the forms they take within the body. According to the World Health Organization, unlike cancer in adults, the vast majority of childhood cancers do not have a known cause. Some chronic infections are risk factors for childhood cancer, and current data suggests that approximately 10 percent of all children with cancer have a predisposition from genetic factors.
“Overall, childhood cancer has much better survival rates than adult cancers. Children also receive much more intensive treatments than adults,” Streby said. “Cancer and its treatments have different effects on growing bodies than adult bodies, and they usually respond differently to drugs that control symptoms in adults.”
Rebecca Granata, journalism teacher at Olentangy Liberty High School, has a son, Dominic, who was diagnosed with cancer when he was very young. “Side effects last longer and have greater impact on children than adults. Kids also don’t understand what is happening to them during treatment, and many end up with anxiety, depression and PTSD,” Granata said.
As the medical world continues to expand exponentially, new treatments for different types of cancers are being researched. According to the American Cancer Society, some include targeted therapy drugs and immunotherapy.
“Chemotherapy works by killing rapidly dividing cells,” Streby said. “Cancer cells are very rapidly dividing cells which is why it usually works pretty well in children, and how we have achieved an overall 75 to 80 percent survival rate for childhood cancers.”Despite this high survival rate, because of the invasive and intense treatment, the side effects can be dire.
“Many childhood cancer survivors have hearing deficits, difficulty having children of their own, heart or breathing problems, learning problems, etc.,” Streby said. “We are working hard at making medicines/treatments that just hurt the cancer cells and leave the healthy cells alone.”
The details and specificities of pediatric cancer treatment can be complicated for the general public, but there are still plenty of ways to help spread awareness for the children in their battle against the illness.
Locally, a great way to get involved is through BuckeyeThon, which is the largest student run philanthropy in the state of Ohio. It raises funds and awareness for the Hematology/Oncology/Bone Marrow Transplant Unit at Nationwide Children’s Hospital. According to their website, they raised $1.7 million last year at their annual dance marathon at The Ohio State University. “Several high schools have also joined in BuckeyeThon fundraising events,” Streby said.
Another great way to give back to the children is through St. Baldrick’s Foundation, a pediatric cancer organization that prioritizes funding directly to pediatric cancers.. According to their website, every dollar donated solely to the kids.
A medical degree isn’t a prerequisite to help children with cancer and their families—all that is truly needed is for people to be there and show up. Because the kids can’t do it alone.
Over the years, people seem to have become immune and inattentive to television commercials of children with cancer asking for families to donate to their cause. Even with many efforts from organizations, such as St. Jude, funding towards pediatric cancer has remained insufficient and less than adult cancers.
The lack of funding within pediatric cancer stems from the fact that patients with this illness have higher survival rates than most other cancers. According to the American Childhood Cancer Organization, survival rates for many types of childhood cancers have improved, but for too many kids, their battles are too short.
With this high survival rate, little funding is given to children diagnosed with cancer. “Only four percent of the billions of dollars that are actually spent on cancer research and treatments are directed towards treating pediatric cancer,” according to the National Pediatric Cancer Foundation.
“In my opinion, pediatric cancer research suffers due to how successful pediatric survival rates are. I think the expression is ‘victim of its own success.’ Most pediatric cancers have an 80 percent survival rate,” Granata said.
Many people overlook the idea of pediatric cancer, its alarming nature being a factor. Some believe it’s hard to see a child going through something so strenuous and refuse to come to terms with the fact that this is reality.
“No one wants to think about kids with cancer. I think people find it scary. You might see St. Jude commercials with cute bald kids, but it is not something people want to talk about,” Granata said.
Many believe that the lack of funding is causing unacceptable aftereffects for the children who go through treatment to cure their cancer. There are several side effects, such as chronic illness, that can cause survival rates to decrease throughout the life of a pediatric cancer patient.
“For my son's cancer, the survival rate for the first five years after diagnosis is 80 percent. But also, from year six to 20 from diagnosis, the survival rate is also only 80 percent. So, we are still losing kids to side effects from their treatment up to 20 years after treatment. Adults who had cancer as a child are very likely to have a chronic illness related to their treatment,” Granata said.
The National Cancer Institute funds money to help find treatments for all types of cancer patients. They are able to receive this money through research grants and donations from the community.
“Only four percent of the National Cancer Institute funding goes towards pediatric cancer. St Jude Children’s Hospital raises a lot of money each year for pediatric cancer, but all of the money that they raise remains at St Jude Children’s Hospital, and very few patients ever go to St Jude for cancer care,” Streby said.
With a lack of funding, comes a lack of research and development of new treatments and drugs for pediatric cancer. According to the National Pediatric Cancer Foundation, fewer than 10 drugs have been created to try to prevent pediatric cancer, and only three of these have been approved.
When asked why little to no pharmaceutical solutions have been made to cure pediatric cancer in the past few years, Granata said, “Because pediatric cancer drugs will never be that profitable. Because with children, drug makers are worried about the long term effects. Pediatric cancer is not anything like adult cancers.”
The lack of funding within the pediatric cancer community impacts the children experiencing it for the rest of their lives. An increase of funding would ideally allow for more research, hopefully leading to new treatments and an eventual cure.
It’s not easy to face the truth, but without doing so, things will never change to benefit pediatric warriors. Live and create positive effects for each and every one of them.