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Childhood Cancer Lifeline president honored with Champions for Children award

CONCORD, N.H., Sept. 13, 2008 -- The Childhood Cancer Lifeline of New Hampshire and the Council for Children and Adolescents with Chronic Health Conditions (CCACHC) observed National Childhood Cancer Awareness Day with a ceremony in Concord, N.H. Sept. 13 is recognized as National Childhood Cancer Awareness Day thanks to a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY). Childhood cancer is the number one disease killer and the second overall leading cause of death of children in the United States. More than 10,000 children under the age of 15 in the United States are diagnosed with cancer annually. Here in New Hampshire, approximately 50 children each year are diagnosed with cancer. 

“We feel that National Childhood Cancer Awareness Day serves two purposes,” said Sylvia Pelletier, president of the Childhood Cancer Lifeline of New Hampshire. “Pediatric cancer can be a deeply personal tragedy, and this day gives parents, caregivers, and children the opportunity to come together, and give care and support to one another. “At the same time, National Childhood Cancer Awareness Day educates those individuals who don’t understand the full implications of this disease. Pediatric cancer comprises only one percent of all such diagnoses, so it typically does not garner as much attention as cancers affecting adults. However, the financial, emotional, and physical toll upon children contending with cancer, as well as their families, is no less daunting.” 

The event took place at the Barley House in Concord. Members of CCACHC and the Childhood Cancer Lifeline of New Hampshire were in attendance, as well as Granite State families who have benefitted from the Lifeline’s many services and staff members from the Lifeline’s popular family camping event, Camp Winning Spirit, held each Labor Day weekend at YMCA Camp Coniston in Croydon, N.H. Denise Brewitt, CCACHC’s executive director, read a proclamation signed by Gov. John Lynch that declared Sept. 13 as Childhood Cancer Awareness Day in New Hampshire. She also presented Pelletier with the 2008 Champions for Children Award.

“Sylvia has become the go-to person for so many families afflicted with cancer,” Brewitt said. “Morning, noon, and night, Sylvia and the Childhood Cancer Lifeline  Also speaking was Saundra Konrad of Manchester, N.H., who shared her family’s experiences with pediatric cancer. Her son Ethan was diagnosed with a rare cancer. Konrad talked about Ethan’s journey and how the family recently celebrated his five-year anniversary out of treatment. 

“As parents, we remember what it’s like to journey through each day,” Pelletier said. “We balance appointments and inpatient stays at a hospital hours from our home. We manage home care for our children with cancer, all the while trying to attend to the needs of our healthy children as well. The Lifeline understands how trying these days can be, so families are urged to call any time with questions or just for support.” 

The Childhood Cancer Lifeline of New Hampshire provides each newly diagnosed family with a care package containing practical assistance such as gift cards for groceries, and gas and phone cards. In addition, each package contains comfort items, such as books and a quilt for the child. The Lifeline also provides emergency and bereavement funding, as well as covers hospital meals. 

Founded in 1995 by a group of parents whose children had cancer, the Childhood Cancer Lifeline of New Hampshire is a volunteer organization dedicated to addressing the practical and emotional needs of New Hampshire families dealing with pediatric cancer. Today, its volunteers include family members, survivors, friends, and other caring individuals.  In the past five years,  

New Hampshire families battling childhood cancer have received over $150, 000 in direct financial assistance. Additionally, the Childhood Cancer Lifeline of New Hampshire provides families an opportunity to connect with and support one another outside of the hospital, through events and a family camp run (Camp Winning Spirit) each Labor Day weekend in collaboration with YMCA Camp Coniston.

Raymond pharmacist receives 2008 Champion For Children Award

RAYMOND, N.H., Dec. 26, 2008

By Toby Henry

A local pharmacist is being recognized for his diligence in taking the time to answer his patients' questions about the sometimes-complex medications they need.

Robert Stout, a licensed pharmacist for the past 33 years who currently works at the Hannaford Supermarket, is the recipient of the 2008 Champion for Children Award given by the Council for Children and Adolescents with Chronic Health Conditions. The council is a non-profit advisory group for parents of children with long-term illnesses.

Officials from the council said the information Stout provides to concerned parents can save a child's life by preventing accidental overdose and also ensures that a sick child gets a proper dosage. Stout, who has worked in the supermarket's pharmacy for the past eight years, said medications typically come with printed information, but even so it can be hard for many parents to understand the sometimes technical language.

And when parents attempt to find out more by looking up information on the Internet, Stout said the massive amount of online recommendations, medical terms and warnings can prove "overwhelming" for many. To counter this, Stout said he takes to time to answer all questions and make sure parents' minds are at ease with the medicine they need to give their children, whether it's cough syrup or a potentially life-saving prescription for a very ill child.

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Melanie Gabree named Governor's appointed parent council member

CONCORD, N.H., Aug. 20, 2008 -- The demands of caring for newborn twins can be a daunting task for even the most experienced and prepared parents. Having a newborn twin that has a chronic illness only makes the parents' responsibilities more challenging. Melanie Gabree of Bedford, N.H., knows this firsthand.

In March of 2006, Gabree gave birth to fraternal twin boys: Alex and Will. Days after the birth, Alex was diagnosed with phenylketonuria (PKU), a genetic disorder characterized by the inability of the body to metabolize the essential amino acid phenylalanine. Phenylalanine is an essential amino acid found in nearly all foods that contain protein. Bottom line: Alex can have very, very little protein in his diet.

Gabree and her husband, Mike, saw their world turned upside-down. "We had the boys in the NICU, where they were taking care of the typical preemie issues," Gabree remembered. "But once Alex was diagnosed, we had to bring him to Boston and keep Will at the NICU. It was all sorts of chaos. Leaving behind one of the boys like that was very difficult."

Once the twins were home, Gabree and her husband began closely monitoring Alex’s protein intake. A low-protein diet prevents the buildup of phenylalanine in the blood stream. Excessive levels of phenylalanine can cause damage to the brain and other neurological deficits. Alex’s diet consists of carefully measured amounts of fruits and vegetables, special low protein foods, and a phenylalanine-free medical formula, so he gets the necessary protein without the side effects of the high phenylalanine content of most foods.

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Ryan Brewitt of Raymond returns Governor's favor

CONCORD, N.H., May 30, 2008 -- Governor John Lynch officially declared May 25 to 31 Chronic Disease Awareness week in New Hampshire at the Chronic Disease Awareness fair and ice cream social kick-off ceremony last week. Lynch, along with New Hampshire Sen. Jack Barnes, R-Raymond, Sen. Maggie Hassan, D-Exeter, and State Rep. Laurie Harding, joined in asking New Hampshire citizens to help raise awareness for the nearly half a million state residents who contend with a chronic disease.

The celebration, hosted by the Council for Children and Adolescents with Chronic Health Conditions and the Partnership to Fight Chronic Disease, included six-year-old Ryan Brewitt of Raymond, who is challenged with a rare chronic disease. Ryan first met the governor last May when Lynch honored him at a Statehouse ceremony after being nominated as the state's Champion Child, an honor given to children across the country who face severe medical challenges. At that meeting Lynch gave Ryan the first-pitch baseball he threw at a Red Sox game. Ryan was excited to return the favor last week and pitched Lynch the first ball to begin Chronic Disease Awareness Week in New Hampshire.

The governor's official proclamation recognized that chronic disease is a major driver of rising health-care costs and the number-one cause of death in America. "Chronic illness is a serious issue that affects thousands of New Hampshire citizens. That is why we must continue to focus our health-care efforts on better disease prevention and better chronic-disease management," Lynch said. "By raising awareness for chronic illness we can focus on living longer and enjoying healthier lives."

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