September is National Childhood Cancer Awareness Month. Acute Lymphoblastic Leukemia, Hodgkins lymphoma, Non-Hodgkin lymphoma, Retinoblastoma, Neuroblastoma, Wilms tumor, Osteosarcoma, Rhabdomyosarcoma, Ewing sarcoma, Medulloblastoma, DIPG, Ependymoma, Astrocytoma, Glioblastoma, PNET... do you know what any of these are or mean? They are all forms of childhood cancer. They are also names that children should never have to learn.
Children should never have to learn about blood counts, steroids, chemotherapies, radiation but the cold hard facts are that they do. Did you know that, according to the American Childhood Cancer Association, childhood cancer is the number one disease killer of children -- more than asthma, cystic fibrosis, diabetes, and pediatric AIDS -- combined? Forty-six children and adolescents are diagnosed every single day. One in every 330 children develops cancer before age 19. One in every five children diagnosed with cancer will die. The federal budget for National Cancer Institute is $4.6 billion. Of that, breast cancer receives 12 percent, prostate cancer 7 percent, and all 12 major groups of pediatric cancers combined receive less than 3 percent of all funding.
Despite the increased number of cases of pediatric cancer, 80 percent of childhood cancer cases are treated successfully. While most childhood cancers are considered highly curable, survival often comes with a "cost." Two-thirds of childhood cancer survivors face at least one chronic health condition and many survivors will receive on-going monitoring and continued physical and psychological care throughout their lives. In addition to the lifelong health implications, treating childhood cancer often comes at a great financial cost to families. The average out-of-pocket cost for a family with a child battling cancer is more than $9,700. Even in cases where health insurance is available, expenses can add up quickly. In addition to the cost of cancer diagnosis and treatment, the hidden costs of food, transportation, and accommodation often add to the financial burden for these families.
Imagine it being your child that is diagnosed with cancer. What would you do, where would you go, how would you pay and how would you continue to work and support a household. These are all questions that the families at the Ronald McDonald House of Memphis have to ask themselves on a daily basis. "Our" families are separated from one another from their family back home, lose jobs and in some cases lose their homes, but that is nothing compared to the treatment their child faces and the possible outcome of their diseases.
It's not only the child diagnosed with cancer that suffers. The siblings suffer as well. They are part of a growing number of children who have something in common -- a sibling battling cancer. These vulnerable siblings face fears and anxiety when their family is thrown into the emotional turmoil of pediatric cancer. Siblings often feel isolated and left out. At Ronald McDonald Houses all over the country we help families be families. They stay together, eat meals together and spend quality time together. They laugh together, cry together and become part of a community that understands what they are going through.
Often I hear about children who feel isolated, ostracized and even bullied by children at home because they are bald, have to wear masks to avoid infections, have missing limbs or have other deformities due to their cancer and treatment. When they come to the Ronald McDonald House they feel "normal" because the other children look just like them. At Ronald McDonald Houses they are able to meet and interact with other children who are going through similar situations and they gain support and confidence through those interactions. Siblings learn it is okay to see those things as well. Parents gain support from other parents because those parents "get" what they are feeling and going through. As much as families want to go home it is often scary, because they are leaving their safety net of the hospital and the Ronald McDonald House.
This September please take a few moments to think about what it would be like if it were your child. What would you do, where would you go for treatment and how would your family manage? It is my sincerest hope that you never have to ask these questions, but for those who do Ronald McDonald House is here with open doors and open arms.
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Now to watch your own child who has not yet begun to live suffer from this horrible disease is unimaginable.