Imagine: the hardest, scariest part of your child’s cancer diagnosis is over. Their treatment plan was effective, and your child has been declared in remission or cancer-free. What’s next? For kids with cancer, survivorship is a permanent part of their story. And while the cancer may be gone, they will have to deal with a unique set of ongoing challenges.

With the right support, these survivors thrive during and long after their cancer treatment. 

Here’s what you need to know as a parent, caregiver, friend, or family member to a childhood cancer survivor:

What is a Survivorship Plan? 

After cancer treatment is complete, you will want both a cancer treatment summary and a survivorship care plan. The summary is just what it sounds like – a detailed account of your child’s diagnosis, treatment plans and protocol, dates of procedures, medication lists, reports of any diagnostic testing, and contact information for their care team members, etc. This is beneficial for any medical care in the future.

A survivorship plan is a more specific plan for any and all follow-up care. This may include:

• Timeframes for follow-up testing and diagnostics
• How to deal with late effects
• Resources for mental and emotional follow-up care with spiritual or professional counselors
• Information on insurance and financial aid opportunities
• A guide for developing healthy lifelong behaviors
• Resources for addressing educational needs
• Appointments with specialists and other healthcare professionals beyond your child’s care team
  
  

5 Critical Needs for Pediatric Cancer Survivors

#1. Ongoing Follow-Up Care

You likely already know that the doctor’s appointments don’t end when the cancer is gone. Every cancer survivor will have follow-up appointments and may even have a detailed survivorship plan to guide and inform future care. While not all cancer survivors will experience late effects (delayed, long-term side-effects of radiation and chemotherapies), it is a real possibility to prepare for. These late effects, which are both physical and mental, can mean:

• Delay or difficult in growth and development, including hormone and fertility issues
• Changes in mood and feelings, including depression and anxiety
• Cognitive challenges in memory, learning, and thinking
• Difficulties making and maintaining social connections

• Complications with organ tissues and bodily functions, including loss of smell or taste, increased cardiovascular risks, and difficulty sleeping, etc.
• Risks for secondary cancers

Part of your child’s survivorship plan will include anticipating and addressing potential late effects!

#2. Emotional & Mental Support

Kids with cancer are resilient – there’s no doubt about it. That doesn’t mean that survivorship doesn’t take its toll. It’s very possible that childhood cancer survivors will struggle emotionally and mentally. Depression and anxiety (particularly health anxiety) is common. They may feel alone in their experience, alienated from their peers, or experience negative feelings surrounding their diagnosis and treatment. It’s absolutely critical that parents and caregivers maintain an open dialogue and help their survivors connect with counselors and learn positive coping skills.

#3. Social Support

Childhood cancer survivors don’t have a normal childhood – period! Because of this, they may feel like they missed out on opportunities to make friends, join in social activities, participate fully at school, or otherwise connect with others in meaningful ways. It may be beneficial to help your child connect with other pediatric cancer patients and survivors throughout their cancer journey. Your survivor may have to rediscover their sense of self both without cancer and as a survivor.

#4. Educational Support

Because late effects can impair cognitive function and their cancer journey may have impacted their education, survivors need extra educational support. This can come in many different forms according to individual needs, but recognize that some catch-up, relearning, and adjustments are likely to be necessary. They may have difficulty paying attention and concentrating, solving problems, and planning in addition to learning difficulties. When you anticipate and look for these issues, it is easier to coordinate and communicate accommodations with educators.

#5. A Lifelong Culture of Health

In general, every cancer survivor will need to prioritize their long-term health and well-being. Because cancer and cancer treatment may increase risks, valuing regular exercise and healthy eating habits are key. This helps reduce risks for future health complications and may minimize the impact of late effects.

Kicking cancer is a team effort – and a lifelong commitment. Childhood cancer survivors will always be survivors. And we will always be right beside them, cheering them on as a community of support, love, and strength.