The Valerie Fund Blog

As medical science allows us to become more proficient at saving the lives of pediatric cancer patients, their need for survivorship support in adolescence and adulthood has grown. Approximately two out of three children experience at least one long term side effect (late effect) of treatment. These side effects may affect any organ depending on the primary cancer diagnosis and the treatment the child received. These may include damage to the heart, lungs, kidneys, sexual organs, as well as cause psychosocial, emotional effects and learning difficulties. In addition, there may be difficulty in obtaining health and life insurance as well as possible discrimination in adulthood obtaining a job.

“Mommy, I want to do normal things, like other kids…” 

When your child has cancer, there are no easy answers to this familiar and heart-wrenching refrain. The Valerie Fund has always known this, and in 1983, the organization took a giant step to give children with cancer at least one experience other kids have – going away to summer camp.

Sickle cell is a preventable genetic disorder.  In the U.S., it almost exclusively affects African-Americans.  It is usually diagnosed in the first year of life and rarely curable. Regardless of regular medication and lifestyle adjustments, such as minimal exposure to cold weather, the disease causes excruciating, unrelenting pain for which morphine and other medications must be administered—even in the youngest children. This happens because the body produces abnormal, sickle-shaped blood cells that clog the flow of blood.

Physicians are trained to utilize modern scientific means to combat cancer at its source, but they are the first to admit these treatments that “cure” can take a huge toll on the patient.  The side effects of chemotherapy and radiation are well known: pain, discomfort, nausea and other issues that require their own set of treatments. That the physical well-being of the patients with life-threatening illnesses is inextricably linked to their emotional state has become widely accepted. Merging integrative health services with medical care and psychosocial support can improve the quality of treatment for these patients. 

Children diagnosed with a long-term or chronic illness, such as cancer or a blood disorder, may have difficulty managing a typical school schedule for weeks or even months. Navigating the school system adds yet another burden to parents already juggling the emotional impact of their child’s illness and the impact it has on their ability to maintain a work schedule while also tending to the needs of their healthy children. Children are removed from the basic framework of their childhood: the world of school, which structures each day and is the main source of their social environment. Virtually every child will require some type of special arrangements with the school and sometimes the school system.

Social workers provide pediatric patients with the emotional support and expertise that comes from those who understand their needs. They can address the very natural and real fears patients face based on the individual child’s personality and where they are developmentally, whether the child is three years old or seventeen years old. Having psychosocial clinicians work through issues with patients and parents increases their level of comfort and compliance in accepting a treatment plan. And that can mean the difference between life and death.

A Child Life Specialist is an integral part of the healthcare team yet prior to a pediatric hospital stay many individuals do not know the roles and functions that a child life specialist plays in the health care journey. Their central role is to help young patients and their families cope with the challenges of illness and hospitalization. Their support and advocacy make a profound difference in the families’ ability to maintain a sense of normalcy during this  vulnerable time.

Child life specialists understand that the techniques to help children manage the stress and trauma of illness differ from those used to help adults. Moreover, when age-appropriate techniques are used with and taught to children they:

• Heal as quickly as possible;
• Cope better with pain and need fewer sedatives and less pain medication; and
• Develop properly and avoid lasting negative effects on their wellbeing.  

According to Dr. Gregory Armstrong, a researcher and pediatric oncologist at  St. Jude Children’s Research Hospital who led the federally funded Childhood  Cancer Survivor Study, there are about 450,000 pediatric cancer survivors  today. This is not only great news for the hundreds of thousands of children but multiply those children by the number of immediate and extended family, you will quickly see that these little warriors each have their own personal  universe.

Your holiday gift to charities that support childhood cancer and blood  disorders works as an anchor and a rocket ship.  As an anchor, it allows the  charity to provide their core offerings. As a rocket ship, it allows them to  expand their menu of services to better accommodate their patient's needs.