September is the Childhood Cancer Awareness month with many events happening around the country and internationally to raise awareness to improve conditions for children with cancer.
The Childhood Cancer Foundation (CCF) was founded in 2013 by parents and family members of children with cancer.
The group originally came together in 2013 to start the, ‘Light It Up Gold’ campaign in Ireland.
The first campaign was so well received that a group of parents decided to set up a national paediatric cancer charity to represent children and families affected by childhood cancer in Ireland and from there the Childhood Cancer Foundation was born and granted charitable status in June 2014.
In 2015, the plight of little Roisin Price from Tipperary town diagnosed with leukemia was brought to the attention of Nationalist readers when her mother Cora, made a public appeal for people to donate blood. Roisin was three years old when was diagnosed with Acute Lymphoblastic Leukemia (A.L.L.). At the time of the ‘please donate blood’ appeal in 2015, Roisin was receiving a combination of different chemotherapy drugs given orally, intravenously, intramuscular and intrathecal, which is done using lumbar puncture and in the previous 14-weeks she had received twelve blood transfusions.
“Roisin is doing well and is in the final stage but longest stage of treatment which is called maintenance that will continue until July 2017,” explained Roisin’s mother Cora.
Maintenence consists of seven 3-month cycles that run consecutively so Roisin has her weekly bloods and dressings done on the kids ward on a Monday and then she is in Crumlin every four weeks for clinic where she gets monthly chemo.
Every Tuesday a nurse or doctor from Crumlin ring Cora to tell her what dosage of chemo to give Roisin daily for the week that is given at home and she has a lumbar puncture for Intrathecal chemotherapy at the start of every 3 month cycle.
“For Roisin the most difficult part is the 5-days of steroids every month… the steroids completely drain her cause her a lot of leg pain,” says Cora.
“The hardest part for me is the worry that Roisin is in high risk of relapse even though there is a very positive outlook for Roisin. As a mother you are going to worry when your child's little body is fighting a big monster. I am positive and from day one my plan has been one day at a time.
“I think awareness campaigns such as the the Childhood Cancer Foundation’s ‘Light It Up Gold’ campaign is very important for the families of children suffering with cancer.
“When you enter the haemothogy/oncology ward in Our Lady’s Hospital Crumlin, you are automatically joined to a new community of people and families who know exactly what you are going through.
“They are always there for each other with experience and advice or support and that is the best part of this journey.”
One in three hundred children will be diagnosed with cancer before their 19th birthday. There are currently over two hundred children under 16 in active treatment for cancer. Treatments are harsh and can cause life long side effects. It is estimated there are over 6000 adult survivors of childhood cancer living in Ireland.
The primary goal of the Childhood Cancer Foundation is to raise awareness among the Irish public of issues surrounding childhood cancer, to advocate for improved services for children and families affected by childhood cancer and to help fund vital supports for parents and children who are affected by this disease.
To find out more information go to www.childhoodcancer.ie.
Appeal for fundraising for the Roisin Price Fund: In 2015, with the help of Tipp Mid West Radio and the Nationalist, a number of fundraising appeals helped raise money for the Roisin Price fund to help the family defray costs traveling to Dublin and Clonmel for treatments. As Roisin is still undergoing treatment, if any club, organisation or individual would like to hold a fundraiser for Roisin please contact her mother Cora Price: 087 674 0117.