If you could go back to the day your child was diagnosed, what advice would you give yourself, knowing what you know now? This is the question we asked a group of cancer parents through a Facebook discussion facilitated by Momcology, a national peer support and community-building foundation for pediatric cancer families and partner to CCRF. In the parents’ answers, we noticed a few themes. If you’re in a place where you could use some encouragement, here are some things that cancer parents wish they could have told themselves when times were toughest.
None of this is your fault.
Did I cause it somehow? Was there anything I could have done to prevent it? Should I have caught it earlier? These are among the thoughts that may have raced through your mind when your child was first diagnosed. Parents who have had these thoughts say they wish they could go back and tell themselves that none of this is their fault, they didn’t miss anything and now is the time to look forward, not back.
“Take a deep breath – there were not prior signs, so stop beating yourself up that you missed something. Our little guy had appendicitis which is what landed him in the ER. That’s when we found out about his leukemia diagnosis.” – Laura
Ignore the statistics.
Parents said their first instinct upon diagnosis was to look up the statistics and prognosis for their child’s disease. But the same parents who did this say they wish they could go back in time and tell themselves not to fixate on the numbers, as hard as that may be.
“I was obsessed with prognosis percentage at the beginning, but along the way I learned it’s just an average and doesn’t mean anything in terms of what will happen to my child.” – Helen
“I am a numbers person, so I really had to work hard on putting this into practice. I was lucky to make a few friends in the hospital early on who told me to put all the statistics aside.” - Charlene
Take things one step at a time.
This was overwhelmingly the most common piece of advice parents say they would give themselves if they could go back to the beginning. Cancer makes the future hazy and uncertain. Thinking too far ahead can provoke a lot of anxiety, and it often isn’t helpful since things can change so quickly from one moment to another. Instead, dwell in the happy moments for as long as they last, and know that one of the best things you can do for yourself and your family is to live in the moment.
“Take one day at a time, and be present as much as possible. Don’t look back on what you missed, but don’t look too much into the future.” – Katy
“My aunt, who is also a childhood cancer mom, said ‘slow down and breathe. This is not a sprint, it’s a marathon. You’re in for a long haul.’ This came to my mind often, and I would take a deep breath and re-center my brain.” - Julie
Let go of the expectations you previously had for yourself.
A cancer diagnosis takes away the control over your life you once had, so let go of some of the expectations you used to have for yourself. You don’t have to be upbeat, you don’t have to be self-sufficient, you don’t have to hide your struggles from others. Accept help if you need it and prepare for your priorities to shift.
“Take that hug from the nurse. It is ok to feel sad and lost.” – Vanya
“I would say don’t try to be so brave and think you can do it by yourself. You can’t. It will only alienate you and make it harder for everyone. You need others, and there is no script or rule. Do not have expectations.” – Nadine
The people and places your support will come from may surprise you.
Many parents expected support from close family and friends, but ended up finding their most dependable supporters were people they never would have predicted: co-workers, neighbors and even strangers. Parents said they would have found it comforting to know that help will come from places they didn’t expect.
“Reach out for help, and know it may not come from expected places, like family.” – Julie
“This journey really separates out who you can really count on. It’s sad sometimes, but then there are always people who ‘come out of nowhere’ and are really there for you when you need it most.” - Helen
You will be able to draw strength from a well you didn’t know existed.
When your child has cancer, they need you, and you don’t have a choice – you have to be there for them. So you dig deep and somehow find the strength you need to do what needs to be done for your family. Parents said they surprised themselves with the strength they have shown since their child was diagnosed, and wish they’d known they were capable of it from the very beginning.
“I had absolutely no idea how much strength I had in me. Looking back, I can hardly believe what I managed. When it’s not a choice, our super powers come out.” - Barb
“I have often said if I had known what I was going to be asked to do in this lifetime, I would have convinced myself it would be impossible. I would have been immensely wrong.” – Mindy
Momcology, in partnership with Children's Cancer Research Fund, is working to create meaningful content that raises awareness about what families face while going through childhood cancer. By combining CCRF's authentic storytelling capabilities with the many voices and experiences from within the Momcology network, we are eager to provide a new platform to amplify caregivers' voices to the public to both accelerate research and raise awareness. Visit Momcology to learn more and join their community.
Your story of childhood cancer is powerful - it can raise awareness for what is needed in the world of childhood cancer research and even encourage fundraising for vital research projects. See how your story can make an impact by filling out our Share Your Story form.