These Are the Things You Should Do for a Pediatric Cancer Family
When my daughter was a year-and-a-half, my husband and I found ourselves in a specialist’s office, only to hear the words, “I’m sorry, but she has cancer.”
Much like cases of shock are depicted in movies, the sound in my ears immediately went out and my vision got blurry, even before the tears started. I tried to write down information that was swirling in the air above my head but I couldn’t even hold the pen, much less remember how to form letters, so the doctor had to do it.
I still have that piece of paper with the doctor’s handwritten words of “rhabdomyosarcoma,” “chemotherapy,” and “radiation” defining the exact moment that would change the rest of our lives.
Fast forward almost two years later — my daughter is not only alive, but thriving. She has a head full of curls, a constant happy disposition, a love for candy and princess dresses, and a penchant for saying the darndest things.
She understands she had a boo boo in her belly last year and the sedated, follow-up scans we continue to get every three months are to make sure it’s still gone. But she has little memory of the traumatic 10 months that our family endured.
It was medicine and prayers that helped heal our daughter’s cancer, but it was help and support from friends and family that helped us survive the experience.
September is Childhood Cancer Awareness Month, and for good reason. It is not rare. Every day, 43 children are diagnosed with cancer — a number that has not declined in nearly 20 years. I could quote you statistic after statistic about pediatric cancer (I unfortunately, know lots of them), but that information is readily available online, especially this month.
What isn’t readily available is information on how to care for a family whose child is affected by childhood cancer.
As a parent who survived 124 days and nights in two different hospitals over a period of 10 months and is now entering a lifetime of healing, I offer you these suggestions to help other families who are struggling with this journey.
Instead of saying or doing nothing.
Many people we knew admitted after treatment they didn’t know what to say or how to help, so they did nothing. Sadly, ignoring a cancer family is the worst thing you could possibly do. Because they’re spending their every breath trying to save their child, parents already feel isolated from the world. Most have to quit their jobs.
So, when friends and family become scarce, they just feel more isolated and unnoticed. They need love, support and strength from their loved ones.
Say: “I’m thinking of you,” “I’m praying for you,” or “I’m wearing yellow for him.” Don’t overthink the perfect response — just offer your support any way you can.
Send: Gift cards for grocery stores, restaurants or large stores like Target and Walmart that all that are within their area. Or drop a card in the mail, for them or the child, every few weeks.
Offer: Be a contact. You might be able to organize a meal train for the family (there are several easy-to-use websites for this). Offer to be the contact for your family, church or school circle to organize those that want to help. This way, your friend only needs to talk to you about their needs or wants one time. Then you can disperse that information to those who want to help. This will reduce duplicate gift cards or meals delivered on the same night, as well as help the family not to repeat themselves over and over (it’s emotionally exhausting).
Instead of saying: “Let me know if you need anything.”
In my opinion, this is the worse phrase to offer anyone going through a hard time, not just a cancer family.
Obviously, this phrase is said with compassion (I’m sure I’ve said it prior to our diagnosis) but having been on the receiving end of it, it is an incredibly empty phrase. Those who are going through a traumatic time do not have time to tell you what to do, nor can they even think of what they may need — they have enough on their plate.
Instead, ask them what they need at that moment or even better, don’t ask — just do it. Send money. Make a donation. Drop off a present or snacks. Mail a gift card. Also, be sure to check in every few weeks because needs will change as time goes on/treatment plans change.
No matter how long treatment lasts, many families feel a drop in support after a few months.
Say: “What do you need this week?” or “I’m sending you a gift card. Where do you shop?” or “The first Saturday of each month can I babysit so you can get out of the house?”
Send: Items to keep in their car. There will be many scheduled (and unscheduled) visits to the hospital, including overnight stays. Having things to keep in the trunk of the car help survive those days, e.g., a blow-up air mattress, blankets, pillows, snacks, DVDs, toys, magazines, and Soduko/crossword puzzles.
You could also include extra clothes that can get dirty with tears, food, blood, urine, poop — you name it. Someone sent us laundry detergent pods to use for the inpatient laundry machine, which was great. Find out if their hospital has food options, like Panera or Subway, and throw a few gifts cards there as well.
Offer: Make food that can be frozen. Every few weeks, one my friends would give me bags of homemade food to keep in our deep freezer. Everything was labeled with heating instructions and could be thawed when we’d had a bad day and food was the last thing on our mind. It was incredibly helpful.
Instead of saying: “But she looks so healthy,” or “You’re not in the hospital so it can’t be that bad,” or “She has all her hair so she must not be that sick,” or “Her hair is growing back, so she must be healing.”
Unless the family announces treatment is officially over, it’s not over (especially given this diagnosis forever changes a family’s future, so it will never, ever be over).
Also, kids’ hair will sometimes grow in between treatments, medications or hospital stays. Some even retain their hair the whole time. Treatment and hair loss is different for each child, each treatment plan, each diagnosis. It’s not indicative of the whole process. Some children have surgery and are cured. Others are in treatment for years.
Instead, ask questions that focus on the health of the family and its members.
Say: “Other than the hair, how is he emotionally and physically?” or “Look at that smile!”
Send: Diapers. If the child isn’t officially potty trained, diapers are a crucial necessity. Our daughter had to be hydrated for hours both before and after chemo. We would change diapers a thousand times during our overnight hospital stays.
Offer: Visit the hospital if allowed. We had a meal train set up for every third Tuesday while we were at the hospital for overnight treatment. It made all the difference in the world to see friends, even if just for an hour. Some friends brought food, others brought presents, and others brought their company. It was all appreciated. Be sure to know the visiting rules/hours at the hospital before visiting.
Instead of saying: “My grandmother died of cancer. I know exactly what you’re going through.”
Unless your child has had a life-threatening disease, you don’t know. And while we sympathize with your sad situation, comparing us to family members, or even your dog, is not connecting with the family.
Parents are supposed to protect and heal their children and when you can’t, your definitions of sadness, frustration, hopelessness, and self-worth are forever changed. The pain about not being able to keep your child from dying is immeasurable and incomparable.
Instead, offer things that helped you through your unfortunate experience.
Say: “I don’t know what you’re going through but I know what grief is. I’m here if you would like to hear what worked for me.”
Send: Toys for the cancer child and if applicable, any siblings. I would recommend skipping stuffed animals though. We had an entire couch full of stuffed animals that we donated. Focus on toys, art projects, games, and DVDs. You can also send items to liven up a hospital room, like string lights, fun bedding, window decals, markers meant for writing on glass, or posters that display love and hope for the family.
Offer: To babysit so the cancer parents can go out to dinner or a movie. Or just to get some sleep.
Instead of saying: “My friend Peter’s kid had cancer and he is just fine now” or “He passed away but I’m sure your son will be fine.”
This response misses the mark, but you can offer your support by giving your friends an opportunity to connect with someone who really does understand what they’re going through. Take the next step and give them Peter’s information so your friends don’t have to ask for it.
Again, pediatric cancer parents don’t have time to do much else but care for their child, and being a cancer parent, Peter will understand if he doesn’t hear from them. I was so grateful that roughly 15 other cancer moms responded to my stress call to help me restructure my life and my attitude to compensate for this challenge, and I will always do my best to help others who are still in the fire.
Say: “My friend Peter’s kid also had cancer. Here is Peter’s contact information if you want to someone to talk to. No pressure either way.”
Send: Hand sanitizer, anti-bacterial wipes and masks. A cancer child’s house must be as sterile as possible. For extra points, include a sign for their front door that says, “An amazing cancer kid lives here. Please use the hand sanitizer provided and don’t enter if you are sick.”
Offer: Take care of things at their house. Walk their dog. Water their plants. Do their laundry. Collect their mail. Shovel their walkways. Our neighbors did all these for us. They also called while out at Target or the grocery store and said, “I’m at the store. Do you need anything?” Friends would call on a Friday night and ask if we wanted pizza delivered. We also had one family that would just drop off random presents on our porch every few weeks. My daughter loved the surprises!
Instead of saying: “Chemo is actually poison for your son. Have you considered marijuana or natural remedies?” or “You’re not on antidepressants, are you?”
Unless you are a pediatric oncologist, you don’t have the luxury to tell a family how to treat their child or survive the experience.
It is incredibly personal, and families will do whatever is necessary to survive. It’s an out-of-body experience — one you have no idea how you would handle it until you’re facing it. Also, each pediatric cancer family will handle their situation differently.
Instead, try some of these actions.
Say: “Are you happy with your doctor/treatment plan?” or “How are you handling this?”
Send: Donations to a foundation that specifically focuses on children’s cancer organization is a great alternative to show your support. Nonprofits like Alex’s Lemonade Stand, Saint Baldrick’s, Cookies for Cancer, Whipping Childhood Cancer and the Children’s Cancer Foundation focus on pediatric cancer research.
Additionally, please consider the Jessica Rees Foundation (which sends monthly “joy jars” to children), A Moment of Grace (offering free spa days to parents with terminally ill children) and nonprofits like Believe in Tomorrow and Lighthouse Family Retreat, both of which offer respite housing during and after treatment. You can also donate to a regional nonprofit that helps local cancer children and their family, as well as the hospital that is treating your family.
Please know these are just a few of the many organizations that help childhood cancer patients and their families.
Offer: Your blood or your hair. Blood and hair donations do so much and the process is absolutely free. My daughter needed three blood transfusions during her treatment and by donating, you’re giving other sick children like her a fighting chance.
Instead of saying: “I keep meaning to send you something,” “I couldn’t do what you’re doing,” or cry every time you speak with the family.
Unfortunately, these statements and actions do nothing to help the family. Crying isn’t being a cheerleader for the family and saying how busy you are tells your friends that they’re not important — both of which make the situation about you. You’re allowed to cry when you get off the phone and you’re allowed to have a life outside this family, but when you speak to the family about the cancer, it should be about them — encouraging them to be strong and expressing how you’re behind them.
And yes, you would do it if you had to. You’d do what you have to do to save your kid — all parents do, but especially cancer parents.
Say: “Your son is lucky to have such wonderful parents” or “What is your daughter into right now so I can send a present she’ll like?”
Send: Messages of support after treatment. Just because the hospital visits stop doesn’t mean the journey is over.
Personally for me, the year after treatment has been far worse than the actual year of treatment, and despite being warned by other cancer moms, I wasn’t prepared for it.
When in treatment, your brain keeps going. You put your head down, grit your teeth, ignore everything and everyone else, and do what you have to do to save your child. It’s when your child is safe and the race has been run that your legs give out.
Your body gives up.
The depression, anxiety and PTSD your body has ignored for so long in order to save your child slams into your body like a ton of bricks.
It takes months or years to find your way to a “new normal.”
Most families also receive follow-up tests, scans or surgeries, allowing “scananxiety” of the cancer possibly returning to affect families on a monthly, if not daily, basis.
Offer: Hugs. Great big bear ones.
Instead of saying: “Everything happens for a reason” or “God only gives you what you can handle.”
Unfortunately, this is interpreted as a personal opinion and is anything but helpful to the family.
Say: Anything else I’ve listed. Anything else.
Send: Text messages. Set a reminder on your phone for a specific day or time each week to contact your friends to check in on them. We are all busy, but this way you will not forget. Even a simple text that says, “We are thinking about you!” does amazing things for a cancer parent’s mood.
Offer: Something personal money can’t buy.
One friend offered us her unrented apartment in the city so we had a free place to stay during radiation.
Another friend wrote (and sang) our daughter a personal song.
One family member was able to reserve a bouncy house place before it opened to the public so my daughter and her compromised immune system could enjoy a bouncy slide before other kids and their germs arrived.
Several friends gave us their daughters’ hand-me-downs so we could spend money on treatment instead of clothes.
We also received several good luck charms from previous cancer survivors like personalized stones and books. My favorite is a hand painted-portrait of a guardian angel who helped heal one of my best friend’s moms. The angel has been hanging above my daughter’s bed for almost two years, and she will stay there until we have five years of clean scans and are considered cancer-free.
In October 2021, we will hopefully celebrate five years of being NED (no evidence of disease) and can officially be declared cancer-free.
Until then, I’ll cringe when she cries at the dentist, remembering all the times she screamed when we had to hold her down to access her port. But we’ll smile when her new bangs fall in her eyes because she doesn’t like using barrettes.
We’ll hold our breath every three months when she gets a follow-up scan, but give a big hearty laugh when doctor and school forms offer one line to list past medical problems.
This morning she asked me, “What happened to my port?” and I wonder if we’ll ever move on from this trauma. But it’s quickly followed by, “Can I wear my flower dress to school?” and I realize we’re one of the lucky ones.
Pediatric cancer will never go away — it will always be in the back seat of our lives. But with time, it will no longer be front and center driving our life. What will take its place is this joyous, friendly and brave girl we call our hero.
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Thinkstock photo by Juliasv