Updated: Sep 13, 2020
The question a parent most often gets when they share the news with others that their child has been diagnosed with cancer is not "How did you know?!" Although, that question is ranked pretty high up there. The most common question we get is "How can I help?" or some variation of it.
The most difficult time of a parent's life is the moment they find out that their child has cancer. It is surreal, it is scary, it is taking a step into the unknown with fear of an unknown outcome. We don't know what to expect. We haven't been immersed in the world of cancer treatment for children, so we literally are taking things one moment at a time, one step at time, one day at a time, as they come.
My first few months, my mind was consumed with learning about the diagnosis, the treatment plan options, the hospital locations best suited for the particular diagnosis, and to learn how my son responds to the treatment plan. As they say, every child is different so there is no "statistically kids respond well to this treatment" to fall back on for a sense of direction and comfort, or realistic expectation.
When I was asked this question several times, it was a very difficult question to answer. It required a sense of humility to humbly ask for specific things, but it was also a greater challenge to know in WHAT ways we needed help.
So this post is for those family or friends who want to offer help! If you are sincerely interested in helping out a family fighting pediatric cancer, these are some very helpful ways you can consider to offer your help.
1. Call or text message the parent or family member directly.
Emotional support is probably the most important. Cancer changes the entire family life, routine and dynamics. It's a drastic adjustment in a small amount of time.
A very common issue the cancer community encounters is that friends (and at times family) disappear into the background. People stop calling or texting, maybe because they see updates on Facebook, Instagram, etc, or because they are afraid to bother them or assume that the parent is constantly on the phone giving updates. It's ironic that the few people who eventually text, point out and say "I am sure you are super busy getting phone calls from everyone" when in reality, after creating a Facebook page, most everyone quit calling or texting. They quit asking how I was holding up. They just quit reaching out.
A quick text or phone call goes a long way to show that you really care about the family. Ask the parent or sibling how THEY are holding up. Ask the cancer Kid how he/she is if they are old enough to talk about their feelings. I can't guarantee they will answer the call or respond quickly to the text, but getting a call or text message is a gesture that does not go unnoticed. It is NEVER a bother. But your silence is louder than you think, and parents feel hurt and "ghosted". Most people resent being left to feel ghosted and decide that those people were not there for them, so they take it as a sign that the friendship wasn't as important as they thought. They grieve the loss of those friendships in addition to dealing with surviving the chaos of pediatric cancer.
2. Be specific in your offer to help.
Instead of asking "How can I help you?", ask if you can do something specific for the family. The offer for general help is such a kind gesture, but sometimes it's overwhelming to get several offers and not know how to ask for the ever growing list of things we need help with. And the list of immediate needs can include things as simple as "Pick up hand sanitizer" (although COVID-19 has made this a harder task to complete) or as big as "Help clean my house". It's hard to ask for help. At the beginning, it may be challenging to KNOW what help we really need and when we figure out what we do need, we aren't sure how much someone is willing to help. Some ideas to offer help are:
Can I come over and do your laundry? Can I clean/put away your dishes? Can I mow (or pay to mow) your lawn? Can I pick up some groceries or vitamins/supplements for you and/or your child? Can I buy large and portable hand sanitizers and lip balm? Can I give you a break somehow?
You won't know what the family needs unless you call or text to see what they have on their plate, what they are most overwhelmed with, and what you can offer to help take something off their plate.
3. Set up a meal train or send gift cards, especially on their hospital/clinic days.
Cook a home cooked meal, pick up meals from a restaurant, or send gift cards to either restaurants with "To-go" or Delivery options. Another great option is gift cards to services like Grub Hub, Uber Eats, Door Dash, etc.
Some people love being in the kitchen, but when a child is in chemotherapy/immunotherapy or any sort of treatment for cancer, the odds that they are spending several hours at the clinic only to have to rush home and figure out how to feed the kids. Or they are stuck at the hospital and inevitably happen to be waiting and unable to leave their room/IV pole during normal meal times.
For our family, a short 5 minute chemo therapy infusion is literally a 3-4 hour doctor appointment/clinic visit. And we pack snacks like crazy and don't get to eat lunch until several hours later.
Some families may need help feeding the kids that stay at home on hospital/clinic days. Others may benefit from getting food at the the hospital/clinic as once you check in, you can't easily escape to get food.
4. Offer to set up a "GoFundMe" or similar fundraising for the family.
For those who have insurance, not all treatments are covered, but even if they are, there is still a financial impact. A family deductible and Out of Pocket Maximum will be maxed out within a month or two months and then the bills pour in and prompt payments are requested. Even if all the treatment is "covered" by insurance, the Out of pocket will be several thousand dollars annually for a minimum of 5 years AFTER treatment is over.
During a hospital stay, I met a family who did not have insurance and had been in the hospital for several months. the hospital sends a claim to insurance at $50,000 - $100,000 for an admission for a room for an OVERNIGHT stay with treatment! I can't imagine having a child with cancer and not having financial protection through medical insurance. Unfortunately, it's not uncommon.
I spent 8 years working on the administrative side of medical insurance and learned that a cancer diagnosis would cost an employer around $1 million in one year. I kind of nerd out a little bit and read all the billed amounts on our Explanation of Benefits (EOB's) to see how much every stay and every treatment costs. Now I see how it gets to that exorbitant number in 1 year.
Also, many families, with or without insurance, end up having to lose a source of income to be able to take care of their child during treatment, and without income and the every increasing hospital bill debt, you can see how financial help is of essence.
5. Give us normalcy
Our life turns upside down in an instant. Nothing is normal after you hear "Your child has cancer." The routines you used to go about before are no completely shaken up and you have to rearrange and add new pieces and try to make them fit into a sense of normalcy.
Sometimes, we need a night with our friends to watch a fight or a game, or have a night out to eat dinner, catch a movie and have wine with the girls. We still want to have a little bit of what was normal. And it's a much needed mental break from what is breaking us mentally. Call and share your joys and your struggles with us. We still celebrate your victories and want to know your struggles too.
6. Help clean up the house.
Keeping up with the house can be challenging due to all the doctor visits and the several hours spent in clinic, hospital and other treatments. When everyone is finally at home, the other kids are asking for time and attention as they are not used to the new dynamic and schedule, creating a challenge to squeeze in time to clean. And, if I am being honest, the parents are probably struggling to find a moment to process everything and may be to psychologically distraught/depressed to even think about cleaning.
Any offer to help come over or send someone over to clean provides the parent and the family the ability to spend time together bonding as a family during a very unpredictable time. Some kids will survive cancer, and we wish ALL the kids would, but during treatment, you really don't know if your Cancer Kid is going to conquer cancer or conquer death.
Helping clean and tend to the house, do laundry, sweep/mop/vacuum the floors, wipe down counters and/or get dishes put away are simple little tasks that take time away from the family, when they really need to bond and heal together.
7. Offer to give the parents a night off.
Cancer in the home creates such a strain. The focus shifts from the family unit bonding to the family unit surviving. Parents are constantly discussing, evaluating and reevaluating, scheduling and managing all the treatment plans and appointments. Having a night off for the parents allows them to recharge and reconnect and do some self care, because self-care inevitably moves very low on the list of priorities during crisis mode.
8. Help with the kids during the day, especially if the kids are younger.
Cancer doesn't only affect the child, it affects the entire family. I can say that my kids all demanded my time and attention when I was home. The minute that I would stand up to make a meal, thinking that the kids were distracted, I would have all three children crying and asking me to hold them and not put them down. I would be forced to sit back down on the couch, delay the task or delay making dinner, and then I would have Siri text my husband to order a pizza or bring food home. I only have two arms, but I have three kids and their emotional needs are more important.
If a family has a hospital admission, consider offering to let them nap while you watch/play with the kids when they get home. People don't sleep in general during hospital stays with nurses and staff coming in and out of the room several times a night, with the darn machines beeping just when you finally have a chance to sleep, but even more so for a parent managing any cancer treatments and the side effects. Getting an offer for watching the kids can give the parents a chance to recharge or get the immediate support they need, especially transitioning back from the hospital.
9. Stay Away if You are Sick
It may seem silly to have to mention this but you would be surprised. Everyone has a different definition of what constitutes "sick". Our children are so immunocompromised that a fever of 100.4 will send them to the hospital and if they are neutropenic (inability to fight ANY infection), they end up being hospitalized with a very low grade fever. For perspective, we were told that when they are neutropenic, they can easily get sick just from the every day germs that live on the skin, and that a normal immune system automatically defends you from.
If you have a runny nose, are sneezing, coughing or are getting over a cold, please wait until you no longer show any symptoms of having any illness. The runny nose or saliva spray from a cough or spit can be enough to send a child to the hospital. I know you want to come and say hi and love on the family and show your support, but FaceTime or Skype are wonderful alternate ways to show your support. Please don't show up and make the parent feel embarrassed to ask you leave and return at another date.
Last, but most importantly, offer to pray and/or to start a prayer chain with your prayer community. Let the family know you are praying for them and what specific prayer intentions or requests you can pray for the day or the week. Every day and every week presents a new challenge and an offer to pray for those challenges can be a source of comfort for the family, knowing that they are covered in prayer.
Ultimately, a family going through pediatric cancer needs support. Even if they look like they are doing well, I assure you there are things they could use the extra help with! They just may be afraid to ask and not sure who to ask! But we need our village more than ever!