There is simply no preparing for the moment you’re told your child has cancer. There’s no universal guidebook on how to process quite possibly the most devastating news you’ll ever hear, and more often than not, there’s very little warning this life-altering moment is coming.
In the case of my own 2-year-old daughter, Averie, I was watching in awe as she twirled in her tutu at ballet class one week, and the following week I was completely numb watching her receive her first dose of chemotherapy at our local hospital. It happened that fast.
Prior to receiving Averie’s diagnosis, I knew very little about B-cell Acute Lymphoblastic Leukemia, but now waves of information were coming at me at lightning speed, and my brain was in overdrive just trying to keep up. In those first few terrifying hours and days, I didn’t know much, but I did know that this new world felt incredibly lonely.
But not for long.
As soon as the news of Averie’s diagnosis made it out of the hospital room we called home that first week, my husband and I were flooded with messages of support from friends and loved ones who wanted nothing more than to ease our pain. Early on, when anyone asked what they could do to help, my consistent response was “I don’t know.” It was the truth. I was struggling just to breathe, and the idea of developing and delegating tasks was far beyond my mental capacity.
Early on, when anyone asked what they could do to help, my consistent response was “I don’t know.” It was the truth.
Fast forward nearly three-and-a-half years, and I’m beyond grateful to share my now 6-year-old daughter rang the end-of-treatment bell last year. It’s been a life-defining journey, to say the least, and when our milestone coincided with Pediatric Cancer Awareness Month, it felt like the perfect time to leverage our learnings to help guide others on how they can best support a mother whose child has received a cancer diagnosis.
Of course, every situation is unique, so there’s no one-size-fits-all answer. However, I want to share five things you can do to support a pediatric cancer mom (plus three things not to do) in hopes that it might spark the idea that’s right for you.
Do Take Things Off Their Plate
Allow me to let you in on a not-so-shocking secret: having a child with cancer is hard. And as it turns out, caring for a child with a life-threatening medical diagnosis isn’t something you’re asked to take on instead of your normal day-to-day responsibilities; it’s in addition to them. For me, one of the most challenging aspects, in the beginning, was trying to find any semblance of balance. I wanted so badly to focus every ounce of my energy on getting Averie well, but I still had her older sister to worry about in addition to work obligations, a marriage to keep strong, and my own physical and emotional health—something I didn’t learn to prioritize soon enough.
Suffice to say, if you’re looking for a tangible way to support a cancer mom, start by asking yourself if there’s anything you can cross off either their current or future to-do list. If you’re coworkers, consider whether there are any active projects you can take off their plate. If your children are friends, offer to drive their healthy children to school or activities to eliminate any added juggling on their end. If you’re an animal lover, offer to take the dog for a time so their household has one less moving piece. If you’re neighbors, offer to pick up their groceries or have dinner delivered one night. If you’re a close friend or family member, consider starting a GoFundMe to get ahead of any potential financial challenges, or simply offer to pass on medical updates to others so they don’t lose precious time replying to each incoming message individually.
At the end of the day, you can’t take away the heartbreak of a pediatric cancer diagnosis, but you can give a mother the gift of time so they can focus more of their energy on caring for their child, their family, and themselves.
Do Be Patient
Living life when your child has cancer feels a lot like riding a roller coaster blindfolded; you know there will be ups and downs, but since you have no idea when they’re coming, you have to just hold on tight and hope nobody throws up.
On a day-to-day basis, especially during the more intense treatment phases, I found it nearly impossible to predict when Averie might develop nausea from her meds, start crying because of joint pain, or spike a neutropenic fever and need to be rushed to the ER. There’s no such thing as a consistent sleep schedule for a child with cancer, and especially during steroid weeks, mealtimes are all over the place too.
Living life when your child has cancer feels a lot like riding a roller coaster blindfolded; you know there will be ups and downs, but since you have no idea when they’re coming, you have to just hold on tight and hope nobody throws up.
At the end of most days, I was physically and emotionally exhausted, and most evenings, I would fall asleep in Averie’s bed rubbing her tummy or legs because they ached from her steroids. Like most moms, I used to savor the time after putting my kids to bed as an opportunity to play catch up on the day, but during those early months, “me time” was pretty obsolete, and I often found myself feeling guilty for falling behind on my texts and emails.
If you’re reaching out to show your support to a cancer mom, patience is key. At a minimum, let go of any timing expectations you may have for their replies, or even better, give them permission not to reply at all. My absolute favorite messages to receive—especially early on in treatment—were the ones that literally said “No need to reply, but I saw this and thought it would make you smile. Just wanted to let you know I was thinking about you!” Knowing I was loved and supported without feeling the pressure to respond was truly such a simple gift.
Do Check on Their Other Kids
When a child is diagnosed with cancer, the entire family is affected. Immediately after Averie’s doctor confirmed our worst fear, I was heartbroken and terrified for our little girl, but also extremely concerned about how her 5-year-old sister would process the news. Ashlyn had never even heard the word “leukemia” before her sister’s diagnosis, and now she would be forced to comprehend what was happening, adjust to a completely altered schedule and lifestyle, accept that the bulk of attention would be on Averie for a time, and also face some really grown-up fears about the future. Being a cancer sibling is hard work.
And while it was completely understandable and expected that the vast majority of our support network would be reaching out specifically to check on Averie, it always melted my heart when I would get asked about Ashlyn, or have a friend or family member think to do something thoughtful just for her.
If you want to let a cancer mom know that your heart is with her family, consider what you might be able to do to brighten the day of their healthy children. It’s likely they are struggling to keep their lives feeling as normal as possible in the midst of chaos, so inviting them over for a playdate or shuffling them back and forth to their favorite activities can go a long way. Additionally, if you’re dropping off a gift for one child, consider adding in smaller gifts for siblings. Showing a mom that you care about the physical health of their sick child is incredible, but showing you care about the mental health of their healthy kids as well is an unforgettable gesture.
Do Continue to Include Them in “Normal” Conversations
During the first few months of Averie’s treatment, it probably appeared to others that the pediatric cancer world had fully consumed my life (and at times, it probably had). However, underneath my red, sleep-deprived eyes and behind my newly-expanded medical vocabulary, I remained the same person I was pre-diagnosis—albeit with a fresh perspective on life.
I imagine that during this time, friends might have assumed that my child’s health would or should be the default talking point anytime we connected. In reality, however, my sanity was highly dependent on having “normal” conversations with people outside the four walls of the hospital. After all, my sense of humor hadn’t changed, but my need for a good laugh had multiplied exponentially.
If you want to keep a cancer mom smiling, please don’t stop sending them all the hilarious memes that you laughed at together pre-diagnosis. Also, keep in mind that caring for a sick child doesn’t mean they stopped caring about you or others, so feel free to continue sharing your own personal updates (as long as you remain patient with replies, and don’t complain about how hard life is because your child has the flu). I assure you they still want to hear the latest group gossip, celebrate your big promotion, and laugh about your latest disaster date. Having normal conversations can not only provide a much-needed mental break, but it’s also a great way to remind a cancer mom that they still have an identity outside of this experience, and the amazing, multi-faceted person they are will not be lost or forgotten in the shuffle.
Do Offer to Be a Resource If You Have True Relevant Experience
It’s a complete game-changer when processing a pediatric cancer diagnosis to connect with someone who has walked the path before you. There is just something so refreshing about having a friend who understands both the nuances of treatment and the flood of emotions that comes with the journey. Someone who can remind you what that medical acronym stands for, reassure you that your child’s platelet count looks good, and advise you on what to keep packed in your go-bag in case of an emergency hospital stay. Someone who can be honest about what to expect—including the messy parts—so you’ll actually believe them when they say that better days are coming too. Someone who will celebrate every small win alongside you, and also tell you that it’s OK to cry in your pantry.
If you’re in a position to be this resource for a newly-diagnosed mom, I’d argue that you have the opportunity to provide them with the greatest gift of all. Just keep in mind that everyone processes information differently and deserves to do so in their own time. The most supportive thing you can say is, “I understand that your experience won’t be identical to mine, but I’ve walked this path before, and I’m here if and when you need me in whatever capacity would be most helpful.” What an absolute blessing to allow your story to become someone else’s survival guide.
What Not to Do
Don’t Ask How Their Child Got Cancer
There is perhaps no conversation I’m less interested in having than the one that attempts to place blame on how my child got cancer. Of course, I would be thrilled if there were a scientifically-proven origin discovered that could lead to either greater prevention or more advanced treatment options. But today, there is no known answer for how Averie got cancer, and that also means there’s nothing to be gained by guessing.
When a mom is already in a highly-emotionally state, asking whether their child’s cancer is genetic can sound an awful lot like “Did the worst thing imaginable happen to your child because you gave him/her bad genes?” Similarly, asking whether their child’s cancer might have stemmed from environmental factors can feel equally hurtful, as it implies that the catalyst for diagnosis was something within their control.
Personally, I would recommend avoiding this conversation entirely. Not only can the topic be emotionally triggering, but it rarely seems to have the interest of the diagnosed child in mind. More often, it feels like the individual asking is looking for some sort of reassurance from a cancer mom that what happened to their child can’t or won’t happen to their own. Rather than question anything to do with the past, it’s far more supportive to focus on how you can be of the greatest assistance moving forward.
Don’t Give Them Unsolicited Advice Regarding Treatment
I really can’t stress this one enough. I’m aware that we live in a digital age with unlimited access to information. And maybe you’re really into natural remedies, or CBD worked wonders for your boss’ daughter, or you read something online that seemed really promising. However, every single child and every single diagnosis is completely unique, and that’s why there are teams of researchers working directly with pediatric oncologists to develop and implement the best possible treatment protocols for kids based on individual factors including age, genetic markers, white blood cell count at diagnosis, and evidence of disease (or lack thereof) at various points in treatment.
Every cancer mom is well aware that there is a very specific science behind why their child was assigned his or her specific treatment plan and is literally trusting their child’s life to that science. By suggesting they try something that falls outside of the current plan, you are essentially communicating that you don’t trust their team of medical experts. If a cancer mom wants your thoughts on any specific portion of their child’s treatment, they will ask. Otherwise, the best way to show your support is to join them by putting your trust in their medical team.
Don’t Assume Their Pediatric Cancer Journey Has an End Date
As a parent whose child is off treatment this month, this one hits particularly close to home. I’ve had September 10, 2020 on my calendar for years as Averie’s last dose of chemotherapy, and I’ve been very publicly counting down her final 30 days of treatment. I have incredible friends and family members who are waiting in the wings to celebrate with us, and I CANNOT wait. But I also want to be extremely clear that in the pediatric cancer world, end of treatment is a milestone and not a finish line.
For many parents (and especially moms), end of treatment is when PTSD sets in. It’s when the adrenaline wears off, and the reality sinks in. It’s when you begin praying that the chemotherapy did its job and your child won’t become a relapse statistic. It’s when your focus shifts from obtaining life-saving treatment for your child to assessing the potentially devastating long-term effects of that treatment.
I know you may miss the person your friend or family member was before their child’s diagnosis (I’m sure she misses that person too). But you can’t expect that they will ever “move on” from their experience, and on some level, your support will always be needed. Anyone who has been through this journey will tell you that it’s forever shaped them, and while you can’t pull a pediatric cancer mom back into the person they were before diagnosis, you can certainly hold their hand and help them to love the person they’ve become.