Parents

15 Things Parents Of Kids With Cancer Want You To Know

Don’t just ask, "Is there anything I can do?" Do something.

When a child is diagnosed with cancer, it’s hard to know what to say or do for their parents.

We asked families affected by pediatric cancer in the HuffPost Parents Facebook community to share what they wish people around them would understand about their struggle and how to help.

While every family is different, these parents who have experienced the nightmare of childhood cancer offered some insights and ideas about how to treat people in their shoes.

1. Don’t just ask, “Is there anything I can do?” Do something.

“Don’t ask what you can do to help, we don’t know, just offer to do something (or just do it ― mow the lawn, cook a dinner, go out with us).” ― Meghan Swanson Dangerfield

“If you want to be a good friend, don’t say ‘let me know if I can help.’ Just do something. We are too overwhelmed with emotions and caring for our baby to even recognize what we need. Offer to drive to clinic so we can sit in the back in case she pukes. Offer to go grocery shopping. Even getting a gallon of milk is difficult when you can’t take your child in public. Housework and lawn care are all put on the back burner. Everything is put on the back burner.” ― Allison Thornsberry

“Sometimes we don’t know what we need. We haven’t slept in days... Weeks.... Maybe we haven’t showered in the same. Who knows when we ate last. Time stands still when you get that diagnosis and the normal routines are forgotten. Please don’t tell us to let you know if we need anything. We need the cancer to go away. We need our child to be well. We need to not feel numb anymore. Please just step up and bring us dinner. Please text us to say you left a coffee on the front door step. Please say you’ll be available between 2-3 p.m. today and would like to bring some hugs and a comfy shoulder. Just do it. Don’t put more responsibility on us. We have enough.” ― Holly Call-West

2. Leave the medical advice to the doctors.

“Please don’t offer medical advice or miracle cures or tell us what you believe caused the cancer. Leave that to our doctors.“ ― Lauren McQuade Burke

“Don’t assume you can ‘fix’ things by saying something. Your opinions on how we could have prevented this or ways to cure it are not helpful. We are working with very smart people that know more than you do because you read an article that one time. ― Meghan Swanson Dangerfield

“Cannabis oil is NOT a cure all. Yes it helps with some types of cancer, and it may have worked for you ― but don’t tell me that I’m not giving my child every chance at life because you THINK I haven’t used every option. You don’t know what I have or have not tried.” ― Dana Christian Fulbright

3. Stay in touch.

“Don’t desert us just because you don’t know what to say. We have lost a lot of our support network because people don’t know what to say. Just sending a little message saying that they are thinking of us goes a long way! We don’t expect you to fix anything, just be there.” ― Jesse Lynn Whisler-Guess

“Remember that we are still people and include us in a social life to the extent that we are able.” ― Miriam Richter Matz

“Friends stop calling. They don’t want to burden you with their problems... But sometimes we need to feel normal. Please don’t treat us any differently. Please still call.” ― Brandi Poff

“I like being checked on. So many people are afraid to bother us, it forms a bubble. We already have enough of a bubble with being in the hospital with our kids, or stuck at home because they have no immune system. Be active in your support, not reactive.” ― April Skains Blackburn

“Please come visit. Don’t act like my child will give you cancer!” ― Kristin Marie Shay

4. Let them talk about it.

“Let us talk about it. I know it’s uncomfortable for you, but you’ll be OK. Yes, it’s all we talk about, but it is the ONLY thing that matters right now.” ― Allison Thornsberry

“We need help, and it’s godawful hard to accept it. Keep being kind, keep helping, keep visiting, keep letting us know you care. We’re dying inside.” ― Alethea Jo Mshar

5. But also, distract them.

“Just be with us, talk about everyday life things, take us out of the ‘cancer world’ for a few minutes. Show that you remember us as people and a family, not just about the cancer.” ― Meghan Swanson Dangerfield

“If I ask you how you’re doing, don’t say ‘you have enough on your plate to deal with my troubles.’ I WANT to know your troubles. I want to be shoulder for someone. I don’t always want to talk about cancer. I want to talk about how your baby keeps falling into the coffee table because they are trying to walk. Or how your teen is having trouble with math. Yes, our lives revolve around cancer right now, but that doesn’t mean I don’t want to go out for lunch or coffee and talk about other things. Don’t leave me or stop being my friend just because you don’t understand what I’m going through.” ― Natalie Warne

“Please don’t cry if we aren’t crying. That was just more than I could handle.” ― Naura Kobrin

6. Don’t say, “You’re so strong/brave.”

“We are not strong. I always hear how strong I am. I’m not. I cry often. I want to give up often ... but I am a mom, I do what any mom does ― I take care of my child. I wish so much that chemo, radiation, surgery, and MRI were not common topics in our house, but they are. Sometimes we need a friend to let us show we are weak and have a shoulder to cry on.” ― Amanda Renee

“Don’t ask us as parents, how we do it, go to the hospital, sit through surgeries, chemo, MRIs etc. There is no answer, you just do it. This is your child, your heart. You just do it.” ― Alix Lopez

“Just because we are putting on a smile, laughing, trying to live life, doesn’t mean we aren’t crying ... scared and numb on the inside. Seeing your child cry in pain is not easy. Yet we have to put on a brave face and remain strong. For the child. For the family. We may look and act strong, but we are breaking apart.” ― Shanna Dubasoff-Hvidston

“Us parents, we are not strong, we put on a front to help our kids get through this ugly, terrifying sickness.” ― Karen White

“Don’t tell us we are the strongest people you know or ask us how we do it. We really have no choice but to be strong.” ― Divya Bhagchandani

7. Keep in mind that every cancer experience is different.

“Pediatric cancers are vastly different than adult cancers! What worked for your 67-year-old aunt will not work on a 10-year-old. And comparing the two brings so much more heartache than you can imagine. Especially when you lose your child. Please don’t tell me you understand because you lost your grandma/uncle/dog to cancer. You can’t compare losing someone who lived for 65 years to someone who had 65 years left to live.” ― Beth Leslie

“Please don’t tell us about your family member or friend who had cancer in an effort to show you can relate. Your story makes us worry more.” ― Lauren McQuade Burke

8. Avoid clichés and platitudes.

Never ever tell a parent of a pediatric cancer patient that ‘God doesn’t give people more than they can handle.’ Unfortunately people get more they can handle all the time. I know it’s not meant to hurt, but it’s an empty platitude that doesn’t help.” ― Jenna Clark

“When I break down from stress, just hold me. No talking, just hold me. Don’t say things like ‘it will be OK’ or ‘God doesn’t give you more than you can handle.’ Yes it may feel true but I don’t wanna hear it.” ― Kristin Marie Shay

9. Don’t forget the siblings.

“Remember the brothers and sisters ― this is hard for them too. Babysit a sibling. Buy a gift card for toys or books.” ― Lauren McQuade Burke

10. Talk to your children.

“Teach your kids about our kids! Children with cancer miss a ton of school while in frontline treatment, and when they finally go back to school they are not the kids they were. Physically they may not have hair, they may have gained wait due to treatment (steroids) or lost weight due to treatment. Their bodies have been battered by chemo, so they may have a limp. They may not be able to participate in gym or gardening or recess. Please teach your kids kindness, compassion and inclusion.” ― Regina Failla-Hunter

11. Know that looks can be deceiving.

“Our children’s looks can be deceiving. Just because she looks like a normal healthy little girl doesn’t mean she isn’t still on chemo and her immune system is weak and damage being done to her liver and who knows what else.” ―Cammey Turner Lansdale

“Even though my child may look well he is still undergoing treatment. In boys, treatment for leukemia often lasts longer than for girls. My son has to undergo 3.5 years of chemotherapy. Most adult chemotherapies last for much less time. With their treatments, many kids are at increased risk later for liver, kidney and heart failure as well as increased risk for other cancers.” ― Tami Alumbaugh Stout

12. Remember they’re still just kids.

“These are still children. They just want to talk about normal kid stuff. There are no ‘right words’ so don’t stay away because you can’t figure out what to say. It’s OK to say ‘I’m sorry this is happening. I don’t know what to say but I’m here.’” ― Lauren McQuade Burke

13. Raise awareness and donate.

“If you really want to help then reach out in the community and get involved! Help raise awareness!” ― Jesse Lynn Whisler-Guess

“In an election year, pay attention to your elected representatives ― they help set funding priorities. Your vote could help keep kids alive.” ― Jenna Clark

“I was shocked and angered to learn that the funding for pediatric cancer research is so low. The fact that the NCI spends 96 percent of its funding on adult cancer research but only four percent on pediatric cancer research is a disgrace. We need safer and less harsh treatments for our kids. Signing the consent form to administer chemotherapy was such a conflicting decision. Knowing all of the side and long term effects that were to come for my daughter broke my heart, but I was willing to do anything to increase her chances of survival and decrease her chances of recurrence. Our children are worth so much more than four percent. Please help us advocate and raise awareness.” ― Melinda Cumba Kliniewski

14. Understand that it’s a long road.

“Remember that our fight likely goes on long after our kid looks better ... and maybe well past the end of treatment.” ― Miriam Richter Matz

“Children that have had cancer are never completely well. The side effects are LIFELONG and severe, including such things as heart disease, kidney, lung, liver failure...and MUCH more. Just because they aren’t bald anymore, it doesn’t mean they are well.” ― Dana Christian Fulbright

“Our kids’ emotions take a toll as well with the impacts sometimes showing up in unexpected places (e.g., when trying something they haven’t done since before diagnosis at the playground).” ― Kate LaRiche Moore

“The thought of after treatment, when they aren’t getting chemo and the cancer has a better chance of returning, actually scares me more than the chemo and treatment process. There are also after effects to worry about, wondering what my child will and will not be able to do because of this fight. It feels like the journey is never really over. So while people tell me we will get through it, I’m feeling like we will always be fighting, worrying, and going through it.” ― Sara Fernandez

“Just because the cancer is gone doesn’t mean I worry less, my tears haven’t dried up and our nightmare will never be over.” ― Maria Tsaltas

“Don’t forget about the cancer family right after diagnosis. It’s a long road!” ― Laurén Lambert

15. Learn from their stories.

“Never put anything off to do later. Take the trip, go to their games, eat lunch with your kids at school, make memories while you can. Tomorrow is never guaranteed and there are no second chances. Your life could change in an instant.” ― Elizabeth Wooldridge

Quotes have been edited and condensed for clarity.

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