When your child receives a cancer diagnosis, you may feel just as lost and terrified as they do. But ultimately, children – especially young children – depend on their parents and guardians to advocate and protect them throughout the treatment process. Sometimes, only you can be your child’s voice.
Survivorship is a crucial but often overlooked aspect of childhood cancer. While we want all children to reach the status of “survivor,” there’s often little emphasis on their continued experiences and challenges. While the imminent health threats are gone, survivors frequently struggle with fears, complications, and hopes alone.
Understanding childhood cancer means seeing, understanding, and loving survivors. Now, no one’s cancer journey is exactly the same. Survivors may emerge with different feelings, priorities, and points of view based on their experiences. We don’t intend to speak for every survivor – but these are things we’ve heard more than once. With that in mind, these are seven things childhood cancer survivors need you to know:
Many survivors experience “late effects,” or delayed physical complications, from treatments like chemotherapy, radiation, and surgery. For instance, survivors may have a higher risk for heart disease, lung problems, secondary cancers, or endocrine issues affecting growth and hormones. They must be diligent in pursuing follow-up care and regular screenings. It can be stressful!
A cancer journey lasts a lifetime, regardless of the outcome. Many young patients receive a surge of care and attention in the beginning. That concern tapers off over time, especially as they move from patient to survivor. Still, they often need a strong support system due to the lingering physical and emotional effects. Family, friends, and peer support groups can play a significant role in helping them process their experiences and navigate post-treatment life.
Cancer throws a wrench into all sorts of plans. Children might not understand the long-term implications of the disease, but over time, they’ll see how cancer can threaten their future. For example, cancer survivors can face fertility issues that make having children challenging, if not impossible.
They may also face cognitive side effects that lead to educational struggles. They may feel like they can’t pursue certain careers because of it.
But survivors don’t want – and shouldn’t have to – give up on their dreams. Specific educational and career support helps ensure they don’t have to.
No one enjoys going to the doctor, even when they need to. Survivors need specialized, long-term follow-up care from providers familiar with the unique risks they face. Preventive care and lifestyle recommendations, including maintaining a healthy diet, regular exercise, and avoiding smoking, also reduce health risks.
Cancer survivors may struggle with medical trauma that makes these appointments painful or anxiety-inducing. It isn’t easy, but it’s important!
Cancer is a wholly unique experience, especially as a child. Though outcomes improve every year, cancer is still something of a “dirty word.” It’s scary. It’s complex. Childhood experiences are formative, too – shaping who we become in adulthood. Childhood cancer is no different. Because of this, survivors need patience, empathy, and understanding from family, friends, and partners.
Childhood cancer survivors often become the most ardent advocates for research and support for kids with cancer. They understand better than anyone what it’s like to go through this journey. So, naturally, they want other children to have the best chance possible. Listen to survivor experiences. Support their non-profits. Donate to cancer research.
Ultimately, we must understand that the cancer journey doesn’t end with surgery, remission, or completing chemotherapy. Even after cancer is gone, these children and their families are left with a long way to go.
Returning to a sense of normalcy takes time. Even then, there are unique medical considerations, as well as those of mental and emotional well-being. And we haven’t even covered the financial strain it can cause, like difficulty securing adequate and affordable medical insurance.
Here’s the bottom line: the fight isn’t over. If we want to help kids kick cancer, we need to think about survivors, too. This team doesn’t disband when the cancer is gone! Continue to support, love, and advocate for pediatric cancer patients at every stage of their journey.