Advocating For Your Child

The moment you hear the words "Your child has cancer," life takes an unexpected turn, and as a parent, you find yourself facing a myriad of emotions and challenges. Amidst this overwhelming experience, you are your child's best advocate. It can be overwhelming to navigate the pediatric cancer journey, and we are here to support you with valuable tips that can help you effectively advocate for your child throughout treatment and care.

1. Get to Know Your Healthcare Team: Your child's cancer journey is a collaborative effort that involves a dedicated healthcare team. Beyond the pediatric oncologist, nurses, social workers, and other specialists play crucial roles in your child's care. Take the initiative to build a strong and trusting relationship with them. Feel free to inquire about treatment plans and available clinical trial options to ensure you are well informed about your child's options. As a parent, no one knows your child better than you do. Trust your instincts and be assertive when needed. If something doesn't feel right or if you seek further clarity, don't hesitate to push back or request second opinions. Your advocacy can make a significant difference in your child's treatment and overall journey to recovery. Remember, you are a vital part of the healthcare team; your input is invaluable.

2. Talk to a Social Worker: Pediatric social workers play a vital role in providing essential support to children facing chronic and severe medical conditions. Their role encompasses offering emotional support, coordinating care, linking families to crucial resources, and facilitating communication with medical teams. Their unwavering presence ensures parents have everything they need to care for their child and support their healing journey.

3. Keep Your Own Records: Your child's treatment may involve visits to different hospitals and doctors, and maintaining your own records can be immensely helpful. Keep track of daily reports, copies of scans, treatment protocols, and notes on observations. Having this information readily available will ensure continuity of care for your child and empower you during discussions with the medical team.

4. Connect with Other Parents: Sharing experiences with other parents who have gone through similar journeys can be incredibly comforting and beneficial. Connecting with support groups or online communities allows you to exchange information, gain insights, and find emotional support from those who truly understand what you're going through.

5. Build a Strong Support Network: Your family and friends can be an invaluable source of strength during this challenging time. Keeping them informed about your child's condition and treatment is important; don't shy away from accepting their help. Whether it's assistance with transportation, meals, babysitting, or simply having a compassionate ear to listen, a strong support network can make a significant difference in your journey. Additionally, consider starting a CaringBridge page, a free resource where you can provide updates in one centralized location for all your loved ones to stay connected.

6. Ask Questions and Be Prepared: Don't hesitate to research and ask questions to seek understanding about your child's diagnosis. Keeping a dedicated notebook with all medical records and relevant information about your child's diagnosis can be immensely beneficial. It's certainly not uncommon for parents to feel overwhelmed or emotionally distraught (especially at the beginning), making it challenging to remember all the information shared by the healthcare team. Writing down important details helps ensure nothing is missed. Consider inviting another family member or close friend to accompany you to appointments; their presence can provide invaluable support, facilitate clarifying questions, and help you review everything discussed afterward. Alternatively, you can discuss the possibility of recording your conversations with the healthcare provider, allowing you to review and process the information at a later, less overwhelming time.

7. Be Prepared for Hospital Visits: Hospital visits can sometimes be longer than anticipated, especially during treatment. Keep your child's favorite toys and snacks on hand to provide comfort and distraction. Packing a change of clothes for both you and your child can be helpful in case of unexpected overnight stays.

Advocating for your child with cancer is both challenging and rewarding. By getting to know your healthcare team, keeping detailed records, connecting with other parents, and building a strong support network, can help to bring you a sense of hope & understanding as you navigate this journey. Remember that your input as a parent is vital, and you have the right to be involved in all aspects of your child's care and treatment. Stay strong, stay informed, and know that you are not alone in this fight. Together, we can support our children through their cancer journey with love, resilience, and hope.