Mother urges research for a cure
CARIBOU, Maine — An Aroostook County mother who has seen her young son struggle for three years with a rare type of bone cancer is holding out for hope – not only for her son but for all children who battle terrible diseases.
Peggy Gagnon of Caribou is on a mission to raise awareness and spark research to help combat childhood cancer.
“It is becoming increasingly more difficult to cope and to accept what is happening with Zachary, as conventional chemo treatments have failed,” she said on Sept. 8. “I am making it my mission to advocate for Zachary and all children diagnosed with cancer. I know of three children that just passed away in the past six to eight months in Aroostook County. It is totally unacceptable,” she said.
Zachary, now 13, has battled Ewing sarcoma for three years. Unfortunately, his mother explained, the tumors on his lungs are continuing to grow despite treatment. Since September is national Children’s Cancer Awareness Month, she wants the public to join the fight.
“I am very passionate about this as we are living proof that some childhood cancers do not have enough research [for treatments] to be effective,” she said. “Zachary’s oncologist is not certain how much time Zachary has left.”
The disease
According to www.candle.org, the website of Candlelighters/Childhood Cancer Family Alliance, every day, 46 children in the United States are diagnosed with cancer, and on average, one in four elementary schools has a child with cancer, and the average high school has two students who either have or have had cancer. The disease occurs randomly in children, the alliance reports, without regard to ethnicity, socioeconomics or geographical region.
Gagnon said these facts “meant nothing” to her until, in August 2013, Zachary was diagnosed with Ewing sarcoma, a rare, extremely aggressive disease found in bone or soft tissue. Due to its rarity, there are no effective treatments. He underwent harsh chemotherapy for nearly a year, as well as surgery to remove a tumor.
“Zachary was in remission until July 2015, until a routine chest X-ray revealed a growth on his right lung, which has since expanded onto his diaphragm and likely to other parts of his body,” his mother said. “Zachary underwent a multitude of various chemo treatments … all of which were not effective.”
Zachary continues to suffer from loss of appetite, she reported, as well as pneumonia and swollen, painful lymph nodes. He has lost over 10 pounds in several months. His most recent chemo had to be stopped in July due to the high level of toxicity and because the tumors continued to grow despite it.
“Although pediatric oncology has made strides over the past 20 years or more, there is still not enough being done to pursue research and funding for better treatments for pediatric oncology patients,” Gagnon said. ”I am appalled by the lack of funding for research and the lack of more effective and less toxic treatments for children with cancer.”
A family’s anguish
Facing an uncertain prognosis, the Gagnon family is floundering. What to do next? Whom to turn to?
“In the past three years, we have held on to hope – hope that the treatments would work, placing our faith in God, first and foremost, to get us through this traumatic journey. But we have continuously experienced disappointment after disappointment when treatments were not successful,” Gagnon said.
Right now the approach is palliative care, which focuses on providing relief from symptoms rather than a cure. Nursing staff come to the home to help care for Zachary.
Gagnon said little is known about Ewing sarcoma. “Most treatments are palliative at best, which is even more discouraging,” she said. “Prayer is our only hope at this juncture as Zachary’s type of cancer is very difficult to treat and has become resistant to treatments.”
She is concerned for her son, and frustrated with a health care industry that has been unable to offer answers.
“We are in a desperate time. We have been battling this disease for three years and I feel betrayed by a system which seems to be governed by capital gain and clearly is palliative care and not curative,” she said.
“There needs to be more targeted and individualized treatments for childhood cancers so children do not need to be subjected to unnecessary trauma and toxic treatments that are not known to be effective.”
Calling for Help
During national Childhood Cancer Awareness Month, Gagnon said community members can join in the effort by writing to congressional leaders to ask them to support the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act.
The Act was introduced July 29 by U.S. Sens. Jack Reed (D-R.I.) and Shelley Moore Capito (R-W.V.). According to the American Childhood Cancer Organization, the bipartisan legislation would advance pediatric cancer research and child-centered treatment, as well as provide resources for those impacted by childhood cancer.
“Whether we have been impacted by childhood cancer or not, we owe it to our children to be a voice and advocate for better research, funding, and treatments for all children diagnosed with cancer,” she said.
Gagnon also made a plea for help closer to home.
“If there is anyone who may be able to help us with legitimate resources for alternative treatments that have shown to be effective, we would really appreciate any input,” she added.
“At this point, we have exhausted most conventional treatments, consisting of chemo, radiation and surgery. Pursuing alternative treatments in another state is costly and insurance does not cover these treatments,” she said. “If there is anyone in the community who has the ability to help in any way financially, we would be extremely grateful.”
Rays of hopeWhile faith has helped the family cope, they have also been shored up by the community.“So many people have helped, and I haven’t had a chance to say ‘Thank you’ to all of them as we have been so consumed by Zach’s illness,” she said. “I just want people to know we have not forgotten their support.”Maine Game Wardens have even stepped in to help Zach stay positive. They have not only kept in touch with him, but have treated him to some excursions around the area.“Sgt. Dan Menard, Warden Ed Christie, Warden Adrian Marquis, and Warden Pilot Jeff Spencer have recently maintained contact with Zach by giving him a boat ride, plane ride and ATV ride, to help keep his mind off things and help make him smile,” his mother said. “The fact that they took time out of their busy schedule to do this for a child who’s going through pure hell is amazing,” she said. ”They have no idea how much their selfless actions mean to us and they will always be cherished.”Zachary also has special support of the canine variety. Some time ago, he was given a dog, a goldendoodle named Ginger, who has since been certified as an emotional support dog.“She has comforted Zachary during the most difficult times when undergoing chemo treatments,” Gagnon said. “Ginger is an ongoing blessing, as she senses when he is not feeling well and remains near him when he sleeps most of the day. She is an amazing dog and seeing Zachary smile when she is near him brings joy to our hearts,” she said.“There are many things the community can do to show support for children and families going through cancer,” Gagnon said. “Wear a gold ribbon, or sign a petition – if everyone contributes one small thing, we can achieve great things.”
