How to Actually Help a Family Affected by Childhood Cancer

Childhood cancer significantly enriched our family. People think I belong in a madhouse when I type such words, but it’s true. Our surviving family remains richer than we ever dreamed pre-neuroblastoma. We are one member short, of course, and that void can never be filled. But because we live and breathe and grieve from an eternal perspective, we have hope. Because people (near and far) showed up and gave us strong support through our 28-month battle with neuroblastoma, we also have the gift of grieving peacefully without significant financial burden. I have said it before and I’ll say it again: I will never be able to repay the kindness and generosity shown to us. In time, I hope to pay it forward.

When someone you know gets a childhood cancer diagnosis within their family (not trying to scare you, but statistically it’s likely to happen), there is a lot you can do to alleviate the burden that family may feel. While nothing can eliminate the emotional load a childhood cancer family carries daily, we can certainly lighten the load by carrying a few of the lighter things. Please understand that this is NOT an exhaustive list, but these ARE my best ideas after walking my sweet firstborn son, John, all the way from diagnosis to his last breath. (Read John’s story here.)

Do not share news about a child with cancer without permission.

We first heard the words, “Your son has cancer,” on June 20, 2016. It actually sounded more like, “Your beautiful five-year-old boy has a mass in his abdomen that should not be there.” It wasn’t until June 24 that John’s mass had a name: stage IV high-risk neuroblastoma. However, people were already messaging me via text message and Facebook Messenger about my son’s neuroblastoma diagnosis. Why? How? My first idea to help is an example of what not to do. Please do not share news that is not yours to share. The only people who can acceptably share news of their son’s diagnosis (or death or relapse for that matter) are his parents. At the time of John’s diagnosis, we lived in the South where good news travels fast and bad news travels even faster. I often gave my mama permission to share things that were hard for me, but anything of this magnitude ought to be shared only with permission. If you have any doubt, keep quiet.

The time is always right to send a gift to a child fighting cancer.

Following the official diagnosis, treatment began, and so did the amazing generosity of our community. I admit that I often dream of time travel, and John’s diagnosis week is one I’d undoubtedly relive. To say it restored my faith in humanity is an understatement. John received all the toys, coloring books, craft supplies, etc. If you want to help a family with a new childhood cancer diagnosis, I say do it! A few ideas for you that are MASSIVELY helpful include gift cards (Visa and gas cards are the most helpful), blind bags for treats for hard things (John loved LEGOs, but keep in mind the gender/preference of the child on treatment), pocket size hand sanitizer, organizational pouches for art supplies (and the supplies themselves), a backpack for hauling toys to and from the hospital (remember siblings), and blank drawing pads for long hospital stays and clinic days.

It is best to provide supporters with an Amazon wish list to get ideas to meet needs and wants.

Because we got duplicates of so many items, I also strongly suggest that parents and caregivers make an Amazon wish list for their family’s most pressing needs and wants. I did this very early on in John’s treatment protocol because he got approximately 150 coloring books. (I’m not exaggerating. If you’re thinking about getting a cancer kid a coloring book, maybe consider something else.) Coloring books are great, but my boys didn’t color much. John’s happiest way to pass the time was reading and being read to, so we filled his Amazon wish list with books that interested him. We now have a very impressive home library which John enjoyed fully, and his brothers are still reaping the benefits. We are so thankful.

It is helpful to have a Meal Train manager.

Another very practical need during that first hospital stay/initial shock wave at diagnosis is the creation of a Meal Train. A Meal Train is an online crowdsourcing platform that serves as a tool to get meals made with love into the homes and hospital rooms of families in need. If you’re thinking of creating a Meal Train for a family with a childhood cancer diagnosis, note that this may be a responsibility that extends for years to come. Throughout John’s 28-month-long journey with neuroblastoma, I knew that my cousin was just a text message away when I needed meals organized. And the craziest part about our arrangement is that she lived in New York and John’s treatment was happening in Georgia. My point here is that you don’t even need to be geographically close to meet this need.

Meals delivered are an ongoing need for families fighting childhood cancer.

However, if you are geographically close, you can provide a meal. Our family was fed well (a little too well) during our hospital stays as well as John’s final days at home. I would often forget to eat or not be able to get away from John’s hospital room to purchase my own food. When someone brought me food, it saved me one decision for the day. I will never be able to say thank you enough to the people who spent time purchasing, preparing, and delivering food to our family. One more note concerning food: if you’re ever able to deliver a meal or two to a cancer family, keep in mind that they are often unable to exercise and eat well due to the chaos of their normal life. I assure you that the extra time you take to ensure that their food is healthy and nutrient-rich will be much appreciated.

Often overlooked is caregivers’ need for physical activity.

Something that I didn’t receive during John’s treatment but witnessed others benefiting from (and I think is a genius idea) is a personal trainer or free gym membership. If you have the ability to invest in the wellness of a cancer parent (especially a mama), it is a very worthy investment! Most mamas with a child with neuroblastoma gain somewhere between 10-50 lbs. during treatment. You guys, this is not okay, but it’s the norm and I definitely find myself among these women struggling to lose the weight I found during treatment. A few ideas to invest in the wellness of a cancer parent: gym membership or classes, an activity tracker watch, a massage certificate, or just a phone call/text for accountability. Please bear in mind that it’s best to talk to the individual parent you aim to help about these issues. Some cancer parents are doing all they can to just survive and may not have anything left for exercise.

Offer to deep clean a cancer kid’s home.

Another really excellent (and ongoing) way to help a family affected by childhood cancer is to have their home professionally cleaned or to provide it with a professional-grade cleaning yourself. This is not something that anyone did for us (largely because we lived with my mama for the majority of John’s treatment), but I could see this being an amazing help. Childhood cancer families are rarely home, but when they are, it’s often with an immunocompromised child (i.e. a child with no functional immune system). It is stressful worrying about germs all. the. time. and the regular deep cleaning of a home would certainly lessen that stress.

Professional photography is an invaluable contribution.

I write this as a bereaved parent. To me, there is nothing more valuable in this world (other than my Bible and my family) than my beloved and oft revisited photos and videos of my beautiful son, John. On a few occasions, talented photographers in our community donated their time and talent to photograph our family of four as it was at that time. If you want to procure a unique and well-loved gift for a childhood cancer family, hire a photographer for them. And for those of you who are professional photographers, I hope you’ll consider donating your time and talent to a childhood cancer family. (You can usually get in contact with the child life department at your nearest children’s hospital to donate your time and talent. If you do initiate contact, please follow through.) Even if a child survives and grows to be a wrinkly old man/woman, the bald season is fleeting. Most families want to remember and document their child’s cancer journey well.

Donate creativity, time, and money to fundraisers for families affected by childhood cancer.

This may come as a surprise (sarcasm), but families affected by childhood cancer are often short on cash. Before John was diagnosed, we were a single-income family save my very part-time job in retail. Of course, as soon as I heard the c-word, I text my boss my resignation. Apparently, professionalism flew out the window at diagnosis too, you guys. That same boss immediately set up a GoFundMe for our family. I felt so thankful. Bear in mind, if you choose to set up a GoFundMe (or similar) for a family, be prepared to manage it for years to come. My husband also needed to take a lot of time away from his job because several of John’s therapies required two caretakers to manage care. As a result, our single source of income was often slashed. We had no financial worries during this time because friends, family, and strangers alike organized fundraisers for our family. If you have the option to organize a fundraiser with your church, your business, or your school, know that your generosity to a family with childhood cancer is a lifeline keeping them afloat when their entire life is in turmoil. Thank you ahead of time for your creativity and generosity. Oh, and please invite me to your fundraiser.

Pray continually.

Please don’t forget to pray. Our John had a prayer group thousands strong during our journey with neuroblastoma: Praying for Tenacious John. As a result of praying people, we witnessed small miracles and the faithfulness of God along the way. The reason parents create these prayer pages is that they are desperate for prayers. They are experiencing that which is unimaginable for most (cancer in their own child’s body) and are trying to avoid the unthinkable (bereavement). If you comment and say that you are praying, please do pray. Pray not only for healing but for peace and provision and hope and the Holy Spirit’s filling. Prayers carried us (and continue to carry us) along. Thank you; you know who you are.

There are many other ideas that may serve other families. Some parents would relish in a date night every now and again. It gave me severe anxiety to leave my cancer kiddo in someone else’s care. Some families might enjoy frequent visits with friends and relatives. I preferred to quarantine our family unless John’s immune system was super strong. Some parents need a walk outside. Me too, sister. Just don’t judge too hard if I’m praying and crying loudly as I pound pavement or path. My point here is that all families are unique with individual needs. I hope that you will take the time to learn some of those needs and to stick close by your people in the battle of their lives. If you refuse to look away and diligently love on them instead, I promise that you will be the one blessed.

As I mentioned before, this is not an exhaustive list. If you have encountered a childhood cancer family (or perhaps, you’re a part of one), please leave a comment with your best ideas to actually support a family affected by childhood cancer.