Childhood Cancer survivors tell us how is their life after overcoming the disease

• Childhood Cancer International (CCI), of which the Spanish Federation of Childhood Cancer Parents is a member, has established June as the International Childhood Cancer Survivors month.

• Adolescents and young adults from all over the world tell us their story to raise awareness and urge governments, development institutions, civil society organizations and resource institutions to ACT NOW and DO MORE for childhood cancer survivors and their families

“The journey of childhood cancer does not end after the final treatment has been given and the announcement that a child/adolescent is now cancer free. Along with the impressive gains in survival have come “late effects,” which may impair some of the survivors’ health and quality of life”. According to Childhood Cancer International (CCI): “Patterns of late effects have emerged among subgroups of childhood cancer survivors that have contributed to the categorization of childhood cancer as a chronic disease with implications for continuing care. By the time survivors are 45 years of age, more than 95% of them will have a chronic health problem”.

To raise awareness about the magnitude of the problem, the Spanish Federation of Childhood Cancer Parents, a founding member of CCI, a network of more than 177 childhood cancer parents and survivors national coalitions and grassroots organizations as well as childhood cancer support organizations, in more than 90 countries and 6 continents around the world, is launching in June a campaign inviting survivors from all over the world to tell us how is their own life after cancer. We are inviting governments, development institutions, civil society organizations and resource institutions to ACT NOW and DO MORE for childhood cancer survivors and their families:

• More targeted, less toxic, less damaging childhood cancer treatments. From 1990, only 2 drugs have been approved in the United States to exclusively treat childhood cancer. “This weak record of drug development for pediatric cancers underscores a huge inequity in attention and focus”.

• Optimal information and education campaigns to increase awareness of late effects and their implications for long-term health and well being of childhood cancer survivors and their families; and to address stigma and discrimination against childhood cancer survivors.

• Reinforce and strengthen public programs, services and health insurance coverage for childhood cancer survivors.

• Enhance training on survivor needs, late effects and their management for both specialty care professionals and primary care medical practitioners.

• Ensure national cancer control plans have a component on childhood cancer survivors.

• Expand and scale up researches on the nature, extent, implications and interventions to avoid or minimize impact of emerging challenges and late effects on the survivors health and overall well-being.

Niños con cancer (Children with Cancer), joins this international campaign with two actions:

• The exhibition #cuandoerapequeño in Madrid Puerta de Atocha, space loaned by Adif, showing children who have or have had cancer in different jobs they dream to in the future. Emotional and shocking images will give life to this exhibition, promoted with the aim of raising awareness about the battle of minors and their families in order to achieve their dreams, and projecting a positive future, personal and professional.

The author of the photographs is Iban Retegi, director of #cuandoerapequeño.

When the doctors explained to Ángel that his body was home to a number of “bad cells”, he replied: “Oh, yes? Then, what I have is cellulite!” During treatment, Ángel didn’t lose his smile and showed no fear. He made his best friends in the hospital. Ángel hasn’t decided yet if he wants to be a policeman or a reporter.

• Testimonies of survivors from all over the world are disseminated in CCI facebook page “childhoodcancersurvivorsjourneys” together with 8 Myths and Misconceptions about childhood cancer survivors.

Fragment of Sergio’s testimony, 20 years. He had leukemia with 7 years.

 “One of the hardest things of my life was when I came back to school after a long period receiving lessons at home because I wasn’t able to go to school. This day arrived, finally I was going to see all my colleagues and friends, I was going to get a hint of normalcy. Unfortunately, as you can imagine, it was not that way. It was just the opposite. Everything, absolutely everything had changed. Nearly all my classmates excluded me and called me “carcinogenic shit stay apart from me, you are contagious” day after day”

 Fragment of Vanesa’s testimony, 23 years. She had ovarian cancer with 10 years.

 “And finally the best news arrived: The cancer had disappeared. I didn’t do any type of celebration or party for this reason, simply I returned home with the intention to live and go back to being a normal teenager but my life had changed, I was not the same person and there were a thousand things in my head that had been changed”.