Children march on Washington for a cancer cure
RENO, Nev. – On June 22, 11-year-old Bailey Johnson of South Lake Tahoe and 6-year-old Mikayla Jeppson of Sparks marched into the Washington, D.C. offices of Nevada’s federal representatives and set forth their demands. The young cancer survivors wanted 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.”
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 Mary Jeppson.
“They had to shrink it with chemo(therapy) before they could even operate,” Mary Jeppson said.
Finally, after a 10-hour surgery to remove the tumor, Mikayla has been cancer free since December 2007.
Both Mikayla and Bailey 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. The Barrick Gold Corporation made this year’s trip possible for the Nevada advocates to attend by sponsoring it.
This year, the group petitioned for the full funding of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, which could provided $30 million pediatric cancer research funding according to CureSearch.
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, 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, Mary Jeppson said cancer treatment is not just a local issue. The national protocols are important so that each child with a certain kind of cancer receives the same treatment, Mary Jeppson added.
“This funding, it’s a national thing that will really help our local kids,” Mary Jeppson said. “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,” Mary Jeppson said. “To meet with their offices, it makes you feel like you are doing something.”
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