Galloway girl, 8, beats rare cancer

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Helena Duntley Helena Duntley

GALLOWAY – A little more than a year ago, members of the Duntley family here had no idea that one year hence they would be fundraising and preparing to participate in the 2013 Philadelphia CureSearch Walk.

Last year at this time, Helena Duntley was excited about the upcoming daddy-daughter dance she would be attending at school with her father, Joshua Duntley, a professor in the Criminal Justice Department at Richard Stockton College.

But exactly one week after that dance, lives were changed when seven-year-old Helena was diagnosed with a rare childhood cancer.

She was diagnosed with Stage 3 Wilm's tumor last June. 

Wilm's tumor is a cancer of the kidneys that is discovered in approximately 500 children in the United States each year. 

Helena’s tumor, her right kidney and a small portion of her liver had to be removed. 

She then underwent both radiation and chemotherapy treatment at Children's Hospital of Philadelphia. The treatments extended through this January.

“Nobody knows why children develop Wilm’s tumor - which is extremely frustrating for the families who are affected by this cancer,” Helena’s mother Paula Duntley said.

Paula, Joshua, Helena and Carys, 2, will participate in the Saturday, June 1 walk to raise money for pediatric cancer research. Walking with them will be friend Christine Tartaro, also a professor of criminal justice at Stockton.

Cancer is the number one cause of disease-related death for children. CureSearch is a national non-profit that provides funds for local clinical trials for children with cancer and for childhood cancer research, Paula Duntley said.

Only 4 percent of government cancer funding goes to childhood cancer research, Paula Duntley said. 

Readers can help make a difference for all children fighting cancer by supporting Helena's team on the June 1 walk in Philadelphia.

To donate, see www.curesearchwalk.org/philly/helena or contact the duntley family at:  This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

A year ago, the Duntleys were a typical family of four.

Mom, Paula Duntley, stays at home caring for Helena and Carys.

Helena, now 8, is in second grade at Arthur Rann Elementary School. 

“She hasn't really been involved in many outside activities since she started treatment,” her mother said. “She does really enjoy drawing, playing outside, and playing with her little sister. She is definitely looking forward to becoming more involved in activities again.”  

The family first learned Helena was ill while on vacation to Albuquerque, N.M.

“Josh was attending a conference, and we brought the girls along because I am originally from New Mexico and have friends there,” Paula Duntley said. “We thought it would be fun to show them where mommy used to live.”

The day after they arrived, Helena started complaining of pain in her side and was running a fever.  Her side hurt her a couple of times during the past month, but the pain always went away. 

“We thought maybe now she had appendicitis,” her mother said. “We took her in to the Urgent Care at UNM hospital, and they ran some tests, but didn't come up with anything definitive.”

The Duntleys were told to return the next morning if Helena’s pain remained.

“We did go back the next morning and they did an MRI,” Paula Duntley said. “That is when the tumor was discovered.  Needless to say, it is the kind of news that blindsides you.  Josh and I were both in complete shock, but more than that we were just extremely worried for her.”

Helena was admitted the University of New Mexico while her parents discussed where she should be treated. 

“We decided that the best option would be to fly home and have her admitted to the Children's Hospital of Philadelphia,” Paula Duntley said. “We worked with the airlines for a flight back to Philadelphia and once we landed we went straight to the CHOP ER and Helena was admitted to the oncology floor.”

She had her surgery right away.

“She began chemo on June 29, and radiation at UPenn on July 2,” Paula Duntley said. “She had seven radiation treatments and 25 weeks of chemotherapy.  The chemo took longer than 25 weeks to complete, as her blood counts were not always high enough to receive treatment, and she had to stay in the hospital for fever and low counts in August.”

She finally had her last chemotherapy treatment  Jan. 11. 

Then, after having clear scans, she had a final surgery February 21 to remove the port for receiving chemotherapy. 

“We were lucky enough to take a trip to Florida in March thanks to the Make-a-Wish Foundation to go to Disney World,” Paula Duntley said. “The trip was amazing and really meant a lot to all of us.”

Now that her treatment is finished, Helena is scheduled to go back to CHOP for scans every three months for three years, and then every six months for two more years. After that she will be moved into the survivorship clinic.

Her most recent scans May 10 were clear.

“The emotional impact was pretty tough on all of us,” Helena’s mother said. “It is just something you never ever think is going to happen to your child. That sounds so cliche, but it's true.”

A cancer diagnosis takes over every aspect of your thoughts and your life, she said.

“We have made well over a hundred trips back and forth to Philadelphia - some at 2 a.m.,” Paula Duntley said. “You learn how to pack a bag in 10 minutes, and how to sleep just enough to get through days and days in a hospital. There are medicines to remember to take, and days of your child not wanting to eat - not being able to eat.”

She said they had to deal with trips in to the clinic to have people poke Helena and take her blood and then put what is basically poison into her.  

“Pretty much every moment is dedicated to just getting through it,” Paula Duntley said. “If you are looking for our feelings, I think immediately after her diagnosis, I felt mostly terrified of losing her.  Now I am still scared that the cancer might come back, and I am scared for how the treatment affected her.”

 Most people don't realize that the treatment itself can cause problems, including different cancers that can occur later in life, she said. 

“But I am also very hopeful and very glad for every moment I have with her because she is amazing,” Paula Duntley said. “She doesn't realize how amazing she is. She doesn't know exactly how serious all of this was. I don't imagine she will grasp all of that until she is older.” 

She said that she and her husband feel like the research just hasn't come far enough for as long as people have been treated with chemotherapy and radiation.

“They've changed dosages, but there haven't been any major new developments in a long time,” Paula Duntley said. 

One of the hardest parts of having a child with cancer is not knowing why they got it.  “With adults, sometimes you know that it is because they smoked or worked with certain kinds of chemicals or had other environmental influences,” Paula Duntley said. “But with childhood cancer, more often than not, there just isn't an apparent reason, and that makes it all the worse.  The child didn't do anything to deserve a cancer diagnosis, and as a parent you feel absolutely like you should have been able to protect them somehow. It is the ultimate lesson that life is simply not fair.”

She said she’s looking forward to all aspects of the June walk.

“For me, this walk is one way of gaining a little bit of control in what has felt like an uncontrollable situation,” Paula Duntley said. “I'm not a research scientist, but if I can help get the research scientists the funding to help find out the answers to why this happens, as well as better treatments for the children who do end up with cancer, that will help me feel better about our own experience.”

For information on childhood cancer see www.alexslemonade.org/childhood-cancer-facts.


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