Cancer Mommas Share 10 Ways to Support Families Facing Childhood Cancer
Written by 25 Cancer Mommas
There’s no guidebook to lead the way when a child is diagnosed with cancer. For the affected families and their communities seeking to support, there’s no roadmap. We’re often asked what to do when a family in diagnosed, in treatment, or when a family loses a precious child to the disease. There’s no one answer to this, so we polled the Mommas in our private and secret Facebook support group and ask what they would say if asked how to support a family facing childhood cancer OR awareness they’d like to bring to the general public for childhood cancer awareness month. Below you’ll find a very candid and lengthy discussion of how to help, as well as what’s not recommended, when seeking to support a childhood cancer family.
A few themes became immediately obvious, so these comments and suggestions are arranged by those ten main thematic categories:
Tips on how to show up for a family in treatment
Care for siblings and the whole family
Refrain from offering advice and suggestions
Give us grace and refrain from judgement
Please write and send letters
Include us: there’s more to us than cancer
Teach your kids about cancer, difference and diversity
Our fight is never over
Recognize that we are all different
Advocate: raise awareness by sharing childhood cancer messages and information
What really stands out is that families need support and most often aren’t in the position to request it. The childhood cancer journey is pretty universally financially devastating for a myriad of reasons, no one is ever prepared for the financial burden that comes with trying to save a child’s life. Families expressed the need for gift cards, house cleaning, laundry, carpooling support, food, sibling care, and fundraising. Others express the need to remain included by friends, to receive visits and text messages, continued support and care even as the years pass, and for forgiveness when things are rough. Overall, presence, love, connection, generosity, grace and advocacy stand out to us as the main themes throughout these candid reflections.
We decided to leave the conversation fairly intact from how it appeared on our Facebook group. We organized the responses by theme but we did not condense the Mommas’ voices. There’s power in hearing straight from these moms, and to witness some of the repetition of themes as well.
We hope that our community will find this to be helpful and illuminating. It’s another facet of childhood cancer awareness that we hope resonates. Please feel free to comment with additional thoughts, questions, or messages of support! The pictures included in this post were shared by some of the 25 mommas who contributed to this discussion. Thank you for supporting Childhood Cancer Awareness Month and families enduring this difficult journey. Thank you for being willing to hear from us and support us in the process. You make such a huge difference when you show up for a family in need. Community is everything. Thank you!
1: Tips on how to show up for a family in treatment
• "Let me know if there's anything I can do" is not helpful because it puts the ball in our court and we're too overwhelmed to even know what we need. Find a practical way to help and do it. We had a friend who came and cleaned our home every hospital stay. Such a blessing.
• The biggest support I received was a friend who drove us to the hospital for treatment. We had over an hour drive and that level of support was incredible. Sometimes we talked, sometimes I just slept while she drove. But it really was a lifesaver. 💛
• Give a gift card to the coffee shop in the hospital.
• Some of the biggest support I received was from a total stranger who emailed me quite often just to see how I was doing and she understood what I was going through because she herself had been through it.
• Pick a chore/errand to do for the family and just do it.
• My mother-in-law has helped by hiring someone to come and clean, sometimes she cleans or cooks for us, she has done laundry as well. This has helped tremendously.
• Gas cards are amazing direct help. Many of us have to drive 2 or more hours to appointments, etc. and that was a huge help for us during 30 days of radiation.
• Kids with cancer don’t need any more stuffed animals! My daughter was so overloaded with gifts from well-meaning people that we ended up giving lots of things away. Parents who spend a lot of time at the hospital could use a gift card for the cafeteria because they will be eating there A LOT. A friend hired a cleaning lady to come once a week while our life was chaotic - that was a dream. People who offered to entertain my other daughter (going to a movie, staying overnight at a friends, dinner with relatives) while my little one was getting all the attention, was helpful. Our neighborhood went above and beyond to help us by having various fundraisers.
• Our family and friends coordinated a meal train every other weekday for two months during induction. That meant a lot to us❤️ My parents took care of our younger son while we were at the hospital with our daughter. If we hadn’t had them, childcare would have been an astronomical expense.
• Give VISA gift cards (or equivalent) or cash. It sounds so impersonal, but the outpouring of *stuff*, while so very appreciated, was so overwhelming (especially if clutter stresses you out!). Managing gift cards to specific locations takes effort. Cash or non-specific gift cards allow the family to purchase what they need when they need it. (Side note: If you do choose to send something, ALWAYS INCLUDE SIBLINGS).
• Be present - show support, be there—even if you don’t know what to say. If you are able to lend a helping hand, don’t ask—just show up and do, clean, make or bring.
• Hands down, our biggest help by far was my sister who took on a "coordinator" role from Day 1. She responded to all my messages, coordinated the flood of offers to provide help (meals, setting up GoFundMe, etc.). She maintained that role throughout our entire treatment journey and literally handled anything and everything we needed. Again, this type of help would need to come from a fairly specific person, but it was INVALUABLE to us.
• 1) stay connected and KEEP connected. I had a friend who would just text every day or few days, just a smiley face to let me know she was thinking of me. 2) Offer to help with meals, set up a meal train (just bring a meal - don't ask us too many questions, really, we wouldn't have eaten some days if it weren't for people bringing us food), child-care for siblings (just call and offer - don't ask a lot of questions, just take care of things- it’s all appreciated), to clean the house/hire a house cleaner, I had friends even arrange a carpet cleaning before we got home from the hospital after diagnosis. I had someone (out of state) organize a list of things we needed/always needed: sanitizer, masks, new towels, paper towels, etc. 3) VISIT- when possible obviously- we loved visitors and the isolation we were forced into was hard- visitors helped us pass the time
• One thing that meant so much to me was our small group from church would periodically cancel class and come to our house (they stayed outside) and pray for us and Landon. They even showed up on the night Landon passed away and made a huge circle in our yard and just prayed. Those people are still with us and for us today. They have not left our side 😍
• I always wanted someone to treat me to a monthly massage!
Another Momma’s Top Ten
1) PRAY - for each of us
2) Take the sibling(s) out for fun outings or quality time so they feel important & not lost in the shuffle
3) Stick to the information/ requests we provide (gifts off our list are wonderful yet we received so much STUFF we didn’t need or want from well-meaning people)
4) Show up for the MARATHON... this is not a one-and-done disease/ situation and it doesn’t stop just because treatment ends
5) Don’t get mad if we miss a “thank you” here and there - we can get inundated and we just miss some things. Know that we are thankful.
6) Gas cards were life savers! We drove 17 miles one way... and made 100s of trips.
7) Suit up for the “mess” and simply be present - emotionally, financially, mentally, physically, spiritually.
8 ) Connect with us, even if it’s a simple emoji text just to let us know the world hasn’t forgotten or abandoned us.
9) Fundraise for US - the alternative care we seek is a POWERFUL healing tool and usually isn’t covered by insurance. Most of us go down to single income households when we need that second income most! and
10) Don’t judge us if we no longer meet your friendship criteria... this journey changes people and our chapter together might just end. There is likely no ill will involved.
2. Care for siblings and the whole family
• Offer rides and play dates for the siblings. They are often neglected.
• Come walk with me as a family... sometimes I feel I need the motivation of someone reaching out to care for my family.
• It would be so helpful for folks to offer healthy meal options, get bath bombs for mom, and babysit. Cancer affects the whole family, so helping the whole family means so much.
• My 2nd grader was picked up at our house every day rain or shine, by her classmate’s grandma, and taken to and from school. A grandfather of one of my son’s high school waterpolo teammates, offered to take over my carpool for drop off and pick up waterpolo practices. I didn’t ask these people they offered. It was a huge help during the first year of our 5 year old’s intense treatment. I’d say looking out for the siblings and finding ways on blessing them.
3. Refrain from offering advice and suggestions
• Be very careful about offering advice. I had a well-intentioned friend bring our oncologist and treatment plan into question (not because she had a reason too; just in a "let's make sure you're getting the best care available" attempt to help). Obviously, she meant well, but that questioning and her urging to make sure we had looked into all our options caused me a tremendous amount of stress right after diagnosis. (And, for the record, we were in very good hands!). On the same note, I'd advise people to be very careful about sending books, etc. about cancer. We received many of these and didn't look at a single one.
• Don’t compare. Please don’t play the “I heard my best friends sisters brothers kid had cancer and it was Xxxxx and he survived eating nothing but lilacs and goat cheese. Why don’t you do that” or the whose cancer is worse game ...
4. Give us grace and refrain from judgement
• Please don’t gloss over or diminish our anxiety on scans and doctor appointments. It’s never routine. Never. It’s always ridden with fear until you get the all results.
• Please don't expect us to act a certain way. Trauma changes things and we might not act like ourselves or handle things the way you'd expect (many parents of a child with cancer are later even diagnosed with PTSD). Don't distance yourself because we're different.
• Please don’t expect special treatment just because you're family or a close friend. Sometimes we're struggling just to breathe... sometimes we're struggling to care for our marriages or our other kiddos... sometimes we're overwhelmed trying to communicate to our children why their world suddenly turned upside down. Just because you get the Caringbridge/Facebook/Instagram update with everyone else, doesn't mean we love you any less. We just don't have the reserves to update anyone individually. In summary, give us a LOT of grace. ❤❤
• Respect the wishes of the household and wash your hands when you enter without being asked. I was always on high alert around people who didn’t wash their hands or seemed oblivious to what it means to live with an immune compromised child.
• Please understand that we won’t always be able to send a thank you note, but we’re deeply appreciative.
5. Please write and send letters
• Letters in the mail for the child fighting cancer and siblings. A friend’s family would send a letter written by their kids to ours. Most times one sentence written in the cutest kid writing. There was usually also some stickers or something in there. An inexpensive way to say “we are thinking of you”
• Tucker has a great aunt and uncle that live on the other side of the country...we rarely see them but they send all 3 kids cute little notes every few weeks....sometimes not even a note, just something as simple as a sticker of their favorite character. The kids LOVE them and get so excited every time they see their return address in an envelope. It’s a beautiful and welcome distraction.
6. Include us: there’s more to us than cancer
• Treat us like you did before cancer destroyed our world. Yes, we still want to be invited out to lunch. We still care about how you are doing. We are more than our child's diagnosis.
• I want to be asked how my son is doing, but it doesn’t need to be all I talk about. It’s nice to talk about other things, I closing other’s “normal” issues.
• Try to be normal, and don’t always talk about the cancer. It doesn’t control our lives.
7. Teach your kids about cancer, difference and diversity
• Teach your kids to play with kids with scars. The first time I took my cancer survivor to a play area I didn’t think to dress to cover scars (I do now). He was just 12 months. Older kids (4-6) pointed, laughed and said “don’t play with the freak” and others “omg what happened to his arm”. He had no idea 💡 and my oldest was like - you won’t play with my brother I won’t play with you. I left sobbing because he was going back in for another surgery later that month .... teach your kids scars are a sign of a survivor
• Cancer isn't contagious. You might have to be distant for a while but I would have loved to hear a friendly voice on the phone until we are cleared for company. It's ok for your child to play with mine when his immune system is better he won't give your child cancer.
8. Our fight is never over
• I know it’s tougher for when there is active disease but being out of treatment/done does not mean the fight is over. For many it’s just begun. It could all be mind control but actively there is so much work to be done to fight this daily.
• I think it’s important for people to know the emotional and financial toll it takes on a family. And that there are side effects to the medicine that’s saving their lives, that may not present right away. And that even though a child is done with treatment, the fear, the side effects, the emotional toll, are not done.
• Show up even when the initial flood* is over. *I really don't know what word to use. In the beginning folks asked what we needed or to bring meals and I wasn't ready. However once we got a few months in I could have used help but no one was there.
9. Recognize that we are all different
• I feel angry when someone asks me what the prognosis is for my son. This happened at the first family gathering we attended after my son’s BT biopsy and diagnosis. The question felt so insensitive as it forced me to think about the words spoken by the doctor, the statistics, google, and all the unknowns. Six years later I still feel upset that this in-law asked about our situation so casually without regard to the tremendous emotions, fear, and stress I was experiencing at that time. Didn’t he worry what the answer might be??
• Not all cancer parents are the same. We all handle things differently. Be mindful that cancer parents are people. Parents of little people that Are facing unimaginable trauma and heartache. What is no big deal to you ... kids not playing with your kid or not being able to make a play date can break us because we see it through a different lens.
• A big thing that came to mind is letting the family take the lead on how they're approaching the diagnosis, treatment, etc. and responding from there. Every family's response is so different and it helped that we were up front with our family and friends initially that we are not victims, that WE GOT THIS, we couldn't let worry or fear overshadow what we had to do to heal her (we felt there was no other choice) so we expected the same from everyone who loved us. I wholeheartedly believe this changed the energy around our daughter and especially us to feel empowered instead of paralyzed in the "what if's".
10. Raise awareness by sharing childhood cancer messages and information
• This day in age anyone can “share” a post or information so easily... I would love to see more of that from non-cancer peeps!
• JOIN IN THE "Fight" with us. We are SO SO SO thankful and appreciative when people learn the facts, the stats regarding childhood cancer and help "go gold," get involved, join in fundraising, help to spread awareness and ACTIVISM! I can't tell you how much that means to us, especially in grief.
• Participate in awareness would be huge. Don’t just like my posts, YOU share them too.
• I would like to encourage families to show up with positive vibes and encouraging words, and continue to be real and honest with our cancer kids. These kiddos are the bravest I know and we need to continue to stand with them, fight for them, and let our voices be heard, continue to support pediatric cancer research. ❤️🙏🏻💪🏼⛈