The Importance of Support for Patients as Well as Their Families

Every year, roughly 300 children in the U.S. and Canada are diagnosed with pediatric retinoblastoma. The diagnosis and the subsequent scramble to treat the cancer is often traumatic and emotional for the affected little ones and their families.

Throughout the process of retinoblastoma treatments and beyond, receiving several different types of support can help create the best prognosis for the child while also helping to uphold the emotional wellbeing of the whole family.

Receiving Treatment at Pediatric Cancer Centers

Most kids who are diagnosed with cancer are treated at pediatric cancer centers, which treat patients from birth to ages 18 or 19, with some extending treatment to 21 years. In addition to highly specialized and customized treatments, these centers offer clinical trials held by the Children’s Oncology Group (COG).

Developmental Support for Kids

Since pediatric retinoblastoma is usually diagnosed and treated before kids reach the age of five, the cancer treatments and vision problems can affect development. Kids may fall behind in learning because of the time taken up with testing and treatments, or can have trouble reaching milestones because of vision limitations.

Special education services and individualized education programs (IEPs) can help kids catch up and excel at their own pace. By law, schools must provide IEPs for every child who receives special education services so that there’s a plan in place for each child’s development.

These programs can make a huge difference for patients’ lives, helping them feel confident and competent in spite of the challenges presented by their diagnosis.

Emotional Support and Connections

As social and emotional creatures, one of our most therapeutic experiences is being able to connect with others who share our struggles, hopes, and understanding. Such is a major benefit of these centers for coping children and families.

Most hospitals offer some type of support group where families of children with cancer can connect. For children who are old enough, having an understanding companion to talk to about fears and treatments can be immensely comforting.

For families that would rather connect over the internet, online support groups are also available. Online support groups like R-Blastoma and Retinoblastoma Survivors Support Group offer info about research and clinical trials, as well as non-clinical discussions about aspirations, concerns, and daily life.

Finding Support at Home

When pediatric cancer enters the picture, many other aspects of normal life are often neglected. Parents struggle to take on the additional pressures while juggling all of the expected tasks like work, chores, and self care. Neglecting any one thing can add strain and potentially hinder everyone’s wellbeing.

Seeking assistance with home chores from extended family members or hired services can help to ease the pressure and restore balance to the household. It can also be helpful to talk about experiences daily and address new concerns within the family, and with key work contacts and other important individuals.