Courtesy Photo/Northern Nevada Children’s Cancer Foundation - Bailey Johnson and Mikayla Jeppson walk hand in hand toward the Capitol building in Washington, D.C. on June 23. The children from northern Nevada are both cancer survivors who went to Washington to petition lawmakers for pediatric cancer research funding.
Courtesy Photo/Northern Nevada Children’s Cancer Foundation - In the center, Mikayla Jeppson and Bailey Johnson along with members of their families and Northern Nevada Children’s Cancer Foundation visit Leeanne Walker, second from left, who is a representative for Nevada Rep. Dean Heller. The children were in Washington, D.C. to ask for more funding for pediatric cancer research.
The children’s message was simple.
“I don’t ever want kids to feel the way I did,” Mikayla told the senators’ staff. “It makes me feel sad.”
The children sent their pleas to their U.S. senators and House representatives, along with hundreds of others who marched on the Capitol for the cancer research group CureSearch. The organization found child delegates from each state to petition lawmakers individually for cancer research funding. Most were cancer survivors themselves.
“What we did really puts a face on it (cancer),” said Christy Smith, Bailey’s grandmother, who marched with the CureSearch group. “When the senators and congressmen can see these children and talk to them about the nightmare they have gone through, it is not a statistic anymore.”
According to the National Cancer Institute, cancer is the leading cause of death by disease among U.S. children between infancy and age 15. About 10,730 new cases of pediatric cancer were expected to be diagnosed in children younger than 14 years old in 2009. According to CureSearch, one out of five children with cancer dies. Three out of five who survive suffer devastating, often life-threatening, long-term side effects.
Bailey is such an example. The now 11-year-old boy was diagnosed with stage-four neuroblastoma when he was 9 months old. According to Smith, the family was told at the time of the diagnosis that he certainly wouldn’t live to 1 year old.
“After six years cancer free and four years treatment free, he is a miracle,” Smith said.
However, the effects of Bailey’s treatments as a child are with him for the long term. Because of the aggressive treatments, he struggles with hearing loss, dental problems, stunted growth and energy loss.
“It’s truly a journey that I wouldn’t wish on my worst enemy,” Smith said of Bailey’s treatments. “When things settled down, I really wanted to be involved in helping to give back. I wanted to come up with a way so that other children don’t have to do what Bailey had to.”
Mikayla was diagnosed with Wilms Tumor at 3 years old. The tumor in her kidney was originally the size of a soda can, according to her mother, Mary Jeppson.
“They had to shrink it with chemo(therapy) before they could even operate,” Jeppson said.
Finally, after a 10-hour surgery to remove the tumor, Mikayla has been cancer free since December 2007.
Bailey hails from Lake Tahoe and Mikayla resides in Sparks. Both traveled to Washington, D.C. because of their local links to the Northern Nevada Children’s Cancer Foundation, formerly the Keaton Raphael Memorial Foundation.
For the last 10 years, CureSearch representatives have traveled to Washington, D.C. seeking more federal funding for children’s cancer research to reach the day when every child with cancer is guaranteed a cure. Local advocates with the Northern Nevada Children’s Cancer Foundation have been part of the event since 2006. Barrick Gold made this year’s trip possible for the Nevada advocates to attend by sponsoring it.
This year, the group was petitioning for the full funding of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. According to the text of the act, it “amends the Public Health Service Act to require the Secretary of Health and Human Services to continue to enhance, expand, and intensify pediatric cancer research and other activities related to pediatric cancer … and authorizes appropriations for fiscal year 2009 (through) fiscal year 2013.”
According to CureSearch, the bill provided the promise of $30 million per year in pediatric cancer research funding. According to both Smith and Jeppson, cancer research organizations have seen about $8 million this year. The funding would go toward the Children’s Oncology Group (COG), which develops treatment protocols for various children’s cancer hospitals across the United States. The group treats about 90 percent of children in the country with cancer at more than 230 hospitals.
When asked about the local impact of the funding, Jeppson said cancer treatment is not just a local issue.
“These COGs develop protocols that are used in hospitals nationwide,” Jeppson said. “So a child with a certain type of cancer would receive the same treatment. … This funding, it’s a national thing that will really help our local kids. Unless we have the help from our state representatives, we cannot get the funding to find these protocols.”
While neither child actually was able to speak with a Nevada senator or congressional representative, the trip at least made their parents and guardians feel as if they had done some good.
“It’s just an amazing experience,” Jeppson said. “To meet with their offices, it makes you feel like you are doing something.”
Editor’s Note: Bailey and Mikayla were unable to give direct comments to the Tribune as they were busy with camping and summer activity obligations.
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