Transitioning into survivorship is a meaningful milestone for children facing cancer and their families. While it often brings a sense of relief and hope, it can also come with new questions and uncertainties. Survivorship is a lifelong journey, and it’s natural to need guidance along the way. It’s important for parents and caregivers to be informed of the details of their child’s survivorship care plan. If there are grey areas, the best thing a family can do is ask questions. If something feels unclear, asking questions can help you feel more confident and prepared.
Questions to ask your child’s care team:
- What late effects will my child potentially face based on their treatment?
- How should these effects be monitored?
- When should I be concerned?
- Will you connect us with specialists?
- How often will we be seen for follow-ups and specialists?
- How many years should these follow-ups continue?
- What resources are provided for families in survivorship?
- Financial
- Educational
- Emotional
- What preventative steps should we be taking with our child?
For his mom, Denise, this transition has come with a mix of emotions. While there is relief in completing treatment, there are also new fears and uncertainties. One of her biggest concerns is the possibility of relapse. The shift away from constant appointments and monitoring felt like losing their safety net, bringing new emotional challenges to the surface. “Jakai’s tumor was grade two at diagnosis, and if it were to ever come back, odds are, it would come back as grade three,” she shared, describing the worry that still lingers in the back of her mind.
As Jakai completed active treatment, Denise also found herself asking an important question many parents face: Is Jakai going to physically be okay long-term? During treatment, Jakai endured intense regimens and complications, yet time and again, he showed incredible resilience, proving doctors wrong on more than one occasion. Still, the uncertainty of what to expect in survivorship has been difficult to navigate.
When it comes to understanding survivorship, Denise shared that much of what she has learned has come from connecting with others. Through online research and conversations with fellow parents of children with cancer, she has found both information and support. By sharing Jakai’s journey on social media, Denise has built meaningful connections with families who offer advice, encouragement, and understanding. “I feel like I learn something new every single day…. things to look out for, ways to do something, etc.”
Reflecting on her experience, Denise offers heartfelt advice to other families entering survivorship: “Be patient on your journey, even with your child. You wished for everything to be over so quickly, and now it is, but treasure every moment with your child because they are still here.”
She also emphasizes the importance of consistency and caring for the entire family. With six other children, Denise understands how deeply a cancer diagnosis and the transition out of active treatment impacts everyone at home. Supporting each child’s physical and emotional needs has remained a priority alongside Jakai’s care. Through it all, her perspective reflects a truth many parents live by: you do whatever you have to do for your kids. You can read more about Jakai’s journey here.
The NCCS is committed to assisting families facing childhood cancer, from day one of diagnosis, through survivorship. For more information, please visit the “Survivorship” page on our website by clicking here.