My Child Has Cancer: Now What?

Friday, September 21, 2012 - 1:22pm
Medical Social Worker, Department of Pediatrics

More than 80 percent of children beat cancer and go on to lead happy, productive adult lives.

Despite the positive prognosis for pediatric cancer, it’s an earth-shattering experience. Helpless is an understatement as you watch your child fight for their life. You’ll blame yourself, question your decisions and ponder the "what ifs." You’ll adopt a new vocabulary that you never wanted to learn. You’ll read every bit of literature on the disease and spend hours wading through websites looking for answers. As parents we learn to protect our children and control their safety - but with cancer, everything changes. As hard as you try, there is no way to fully prepare for the journey. But, the good news is, there’s an abundance of experts and empathetic ears to offer support and help you navigate this uncharted territory.

In honor of National Childhood Cancer Awareness Month, here are some tips for parents trying to cope with their child’s cancer diagnosis.

  • Don’t Fight the Battle Alone: Emotional support is crucial. Connecting with parents and kids in similar situations can alleviate guilt, ease anxiety and provide powerful camaraderie. Carly’s Club offers family events and support groups to make life more manageable for children diagnosed with cancer and their families.  
  • Find the Right Words: Talking to your child about their disease in an age appropriate way can be a challenge. Wait until you are calm, organized and have all the facts. A gentle, open and honest approach will ease stress and fear, and reinforce love and support throughout the process. National Cancer Institute’s Handbook for Parents offers more advice for talking with your child about cancer.
  • Educate Classmates: School Outreach Program is offered through RPCI’s Department of Pediatrics and helps provide a smooth transition for your child back into the school and classroom. This program educates your child’s classmates on the changes that may occur because of cancer treatment – loss of hair, weight fluctuation, low energy, etc. This helps with any anxiety or self-conscious feelings your child may have about facing their peers. If you request school outreach, an individualized plan is devised and tailored to the needs of your family and child. We visit the school, speak with the kids and faculty about cancer, and offer an open session for questions. For more information about this service contact the Department of Pediatrics at (716) 845-2333.
     
  • Don’t Break all the Rules: It’s important to keep your child’s world as similar as possible. Rules, discipline and structure will provide a sense of normalcy in a chaotic situation. Setting limits for behaviors and activities can unknowingly provide comfort. Help your child continue to feel part of normal life by:
    • Using the same rules and level of discipline as before the cancer diagnosis and treatment
    • Asking your child to continue doing regular chores when able
    • Letting them play outdoors or continue activities they love if they don’t interfere with treatment
    • Spending time with siblings, friends, and loved ones
       
  • Stay Organized: A flood of information and new people will suddenly be part of your everyday life. Staying organized will help you stay calm. NCI offers a list of questions to ask your child’s care team. During the appointment, the following tips can help you remember important details:
    • Write questions in a notebook and take it to appointments. Record the answers to your questions, log medication and treatment options, and jot down names of important players on the care team.
    • Record conversations so you can listen later
    • Ask a friend or relative to come with you to the appointment to help you ask questions and remember the answers.

Cancer is a life-altering diagnosis. You’ll develop new routines, gain new objectives, and succumb to the demands of the disease. Acclimating to change is never easy, but you don’t have to struggle alone. We are here to help you adjust to this unfamiliar world. Life may not resemble the one you once knew, but with time, you’ll find a new normal.

 

To learn more about how to cope with the stress of pediatric cancer, listen to Kristen and Brandee on Roswellness Radio.