Unfortunately, in the last couple months two acquaintances have reached out with the same question, “Someone close to me has just found out their child has leukemia. What do I do? What do I say? How can I support them?”
This is what you can do.
Establish Rank & File
Understand who the front line care team is and how to get in touch with them. If it is your best friend or your brother who has received this difficult news, perhaps you are the front line response, or possibly the diagnosed family has another group of people who are closer to them. Either way, take a moment to understand where you fall into the response team. A newly diagnosed family does not need four people from four different friend groups organizing four different meal trains. Do not ask the newly diagnosed parent what night you can bring dinner, instead ask the them if they have someone setting up a meal train and if not, can you do it. Find out who is holding the support information for the family so that you can work directly with them.
Sometimes the support is being held by the parent, because damn if I myself wasn’t managing the shit our of what Jude was eating and where Selah was playing while spinning out of control in the hospital with Beau. Sometimes control just feels good, necessary, grounding. But in my experience, especially in the first couple weeks post-diagnosis, the parents cannot be caring for their child, taking in all the info, adjusting to the new normal, AND coordinating support for themselves and their other children. In fact, they will likely say things like, “We don’t need a meal train, we will figure it out.” or “We really don’t need a GoFundMe. We have money.” because the easiest person to forget about taking care of is yourself. And letting people help you is h.a.r.d.
GoFundMe/ Meal Train- My encouragement is to help them lean in to a GoFundMe. Not because they “need” it, but because people want to help. People want a way to show-up for them. For example, I had a dear friend who lived in D.C. and texted my mom saying, “I want to help, I’d love to have a cleaner come a couple times, how could I arrange that?” The best way to arrange that…. is to have her donate to GoFundMe because at the same time I had another group of friends coordinating a cleaner for us. It helps support work smart, not hard.
Same goes for a Meal Train. The parents don’t need to be replying to texts from their neighbor’s sisters friend who also had a son with Leukemia, but he had AML which is kind of different, but the same, who wants to deliver a meal and just needs to know if meatloaf on Monday around 3pm would be preferred over casserole on Thursday, but only after 6pm because choir practice always runs late this time of year……….
Setting up either of these can help divert people who would otherwise hound the parents with questions and calls for support, to an actionable place. You know the people, maybe you are one of them. Everyone has the best intentions, but sometimes channeling the helping energy away from the parents, and into a Meal Train/GoFundMe is a beautiful way to take care of the family.
Operate from your strength
The last thing a family needs is you desperately trying to help in a way that doesn’t serve anyone. For example, if you hate cooking, don’t sign-up to bring a meal. If you don’t like watching other people’s kids, don’t volunteer to do sibling childcare. I have a ton of examples of serving out of your strength, but will list three.
A couple prime examples, that I should someday write about in great detail:
My friend Hannah who from the beginning laid out that she would be supporting me and only me. Not Beau. Not my family. Me. She would coordinate social outings for me where applicable, curate Netflix suggestions during the times where social outings gave me hives, and text me about things only pertaining to me as a human. Not as a mom. Not as a wife. Not as a cancer parent. Just me, Betsy. It was kind of funny at first, and completely predictable from Hannah who doesn’t show up with overflowing emotion or homemaking desires. But in the end (is this the end… not really) it became a treasured support role. I know I can always go to her when things are really dark and terrible and have a text convo about why exactly my knew jeans are meant to look just like the “high waters” I have been trying to avoid since 1999.
Then there is my dear friend Caroline. I often joke, though not a joke at all, that everyone needs a Caroline in their life. She brought us homemade meals fit for a king. It helps that she loves to cook and bake, but even more, she loves to serve people that she loves good food. Her meals would include multiple dishes and be truly delicious. She’d curate a menu based on our dietary preferences and then include hand written ingredient lists with every dish and note with the whole meal that explained why she picked the dishes she had and what she experienced while making it. I often joked that if I had to do this cancer thing to get Caroline to be my personal chef, I was in. It’s dark, but she laughed because along with cooking she also has a penchant for dark humor.
Dear Karis. There are chapters to be written about her, but a high level would detail that she has been with me since the beginning. Since her and I sat in her own basement and shuffled through her parents valuables after their untimely death our senior year of high school, through years of mistakes and mishaps that left us and many relationships around us in states of disarray (hi, college.), to the season where addiction almost took Karis from me and I was sure that the next call I got would be one informing me that she was dead. The story didn’t end there though, addiction didn’t win, love did. It sounds like such a cliche, but there is no truer way to put it. And so a couple years later when I was trading off with Josh at the hospital and had a bunch of groceries in tow, I called Karis. We were in hospital isolation so we weren’t able to bring fresh produce to the floor- all food had to be washed and prepped. I called Karis and she offered her apartment, down the road from the hospital, to peel, chop, and prep our provisions. She was out of town so she gave me the garage code. I peeled carrots and chopped cucumbers and cried hot tears into the produce. I hadn’t lost Karis at all and I couldn’t believe my luck.
This is my selfie from Karis’ house. Peeling carrots, dressing salad, and crying over how lucky I am that this world got to keep her.
Another example of serving from a place of strength is that one of our close family friends offered to pay for Selah’s tuition to her Montessori school. When Beaudin was diagnosed we had to pivot very quickly from having a stay-at-home infant, to a full-time childcare infant and, well, that doesn’t come cheap. This family has the financial means and offered to cover this cost for us. They also stepped up in many other ways for our family during Beaudin’s diagnosis, but I tell of this specific support they gave to highlight that sometimes, plain and simply, direct financial assistance is a very supportive way to step-in. Yes, our family could have scrounged together and pinched pennies to accommodate the large flex to our budget. But for those first couple of months, the ease of not having to do so allowed one less thought cycle to be spent on, “How will this ever work?”
Starting top left, clockwise. 1.) Board games and new shirts for his steroid shaped body 2.) A love note from Caroline 3.) A bag of food for the day we got home from diagnosis 4.)Delivered libations 5.)Art work for Beau to hang in the hospital room during inpatient stays.
Contact often, expect nothing
Both at diagnosis and relapse a funny thing happened- I couldn’t function. I lived an #inboxzero lifestyle, never would you find a text unread or a voicemail left waiting on my phone. Never. So, I knew I was in the slog when the red bubble hit double digits, then triple and I didn’t even care. I couldn’t interact with almost anyone. Kind, heartfelt texts were too difficult to read, all calls had to be pushed to voicemail. I couldn’t stand to hear anyone’s voice, to feel their pity, to weigh their concern. Slowly, but surely, I returned. I surfaced. I came up for air. So my advice: reach out, keep reaching out, expect nothing. I find the best way to receive these connections is to be told things rather than asked. Here are some of the texts I have received in the last 2 years that have felt helpful. Their words, not mine.
“Hey, I am thinking about you and how hard this is, and just want you to know I am here, sitting in my room, staring at the wall, wondering why. And I love you.”
“Betsy. Fuck. I hate this. Love you.”
“Hi love. Tomorrow I am dropping a package off at 9am. It’s for you and you alone. Don’t let your kids get into it. The chocolate is NOT FOR THEM!”
“Betsy. This is such shit. I’m sorry. I don’t know what to say, this is just impossible.”
“Hi friend. I am here. No need to reply. Just know I am here. Love you.”
“I saw a ridiculous parent interaction at the park today and it made me so mad that you weren’t there to witness it with me and laugh. Cancer is bullshit.”
“Hey, checking in. Reminding you that its 12noon and you need to eat lunch within the next hour. I will text you again then. Also, look at this stupid cat picture. Aren’t cats just the worst?”
Set reminders to check-in–
Here is my secret: When someone tells you about something, note the dates and set reminders to check-in. For example, if your friend’s child is diagnosed with Leukemia the first big “is this working?” diagnostic is done on Day 29 of treatment. So when your friend mentions, “Yeah, so I guess we do this and then see what the Day 29 results say.” Set a reminder in you phone to reach out on Day 27 with a simple, “Hey, I know Day 29 is coming up. I am sure things are feeling heavy. I am here for you.”
Another example. If your friend says, “It’s just so hard because the timeline basically means that he will be bald this summer and that means like at the pool, he will be bald and people will make fun of him, and I just can’t.” Even though it’s January, even though you feel like she is spiraling out in worry, set a reminder for May. May 12th, send a text that reads, “Hey, pool season is coming up. You had mentioned being concerned about his bald head. I’m going to send you a couple of these hats (insert amazon link.) Love you. Also, glad to come along and dunk any punks that make fun of him.”
Daily– When Beaudin was diagnosed my brother checked in with me 2-3 times a day for the singular reason of making sure I was eating. 9am: “Hey, what sounds good- a breakfast burrito from Dazbog, or a yogurt parfait from the cafeteria?” (A short list of specific choices) 11am: “Hey, if you haven’t eaten, grab one of the granola bars, rounds are coming up and you won’t be able to snack for 2 hours because you said you have the MRI right after.” 2pm: “Honestly, if you haven’t eaten by now, what chance do you have? Eat something.” You get the idea. I was still nursing Selah and as such the intense calorie restriction that seems to come to me with trauma induced anxiety was a problem. Also, turns out, it’s hard to function when you don’t eat. My brother was half way across the country and felt helpless. But he figured out a practical way to step-in and act.
Annually- Chances are that a year from now you won’t recall the exact day your friend’s child was diagnosed, but your friend will remember. Set a reminder for a week prior to the date and reach out. Something simple, “Hey, I know the one year anniversary is coming up. This is still hard. Love you.” or “Hey, this time last year was impossible. Can we go on a walk this week and soak up some sun?” This practice works for cancer, but really it works for any life event. Miscarriage (or the due date of said miscarriage), death, divorce, what have you. Never underestimate the power of showing up with a simple, “I remember too,” in the moments where a person is likely to feel like everyone else has moved on.
Give them things
Laurel Box- A dear friend started a small business that thoughtfully curates gift boxes designed to nourish the heart during trauma or after loss. Laurelboxes stand apart from typical sympathy gifts. Many items are made by hand on site, while others are sourced from small, independent artisans who have partnered to offer exclusive items that help provide comfort through every stage of grief. If you don’t know what to say, or what to send, send a Laurelbox. Shop here.
Every, every, every cancer family needs to own this books. It is the sweetest story of a sibling pair that spend carefree days building forts in the woods until the sister gets sick. The younger sibling notices adults crying and the sister spending more and more time in the hospital. The rain falls and washes away their fort and no one is there to help rebuild it. Until one day, when the sisters strength returns and they are able to build a new fort in the hospital. It never mentions cancer, or sickness, but it tells the story of everything.
It’s an Usborne book and can be purchased online, or through my page here: Betsy’s Usborne & More Books Page
Homemade Meals– Homemade dinners, lunch items that can be taken along to the hospital, healthy snacks (especially during steroids when the child will.not.stop. eating.), comfort foods, breakfast fixings, etc. I had a mom who always brought along a breakfast casserole any time she brought dinner so that we had two meals covered (It was Caroline. Brilliant food care is ALWAYS Caroline.) Another mom who, instead of dinner, signed up to bring yogurt parfaits, eggs casserole, and a bunch of bananas. A hybrid example of meal delivery and eating out was a dear friend of mine who every week for months brought us dinner from Whole Foods. Usually it was one of the delicious soups (back when the soup & salad bar was a thing, RIP, stupid COVID), a bag of fancy local tortilla chips or a loaf of crusty fresh bread. This friend wasn’t a huge fan of cooking, but knew the value of meal delivery from her own experience, and so she came up with something that was supportive to us, and possible for her.
Starting top left, clockwise. 1.) Homemade hand-delivered sauerkraut 2.) Breakfast before clinic with a gift card from friends 3.) Birthday presents- lego and cake! 4.) Smoothie by way of hospital coffee shop gift card 5.)Pearler Beads….. and a pickle… because steroids. 6.)iPads, including one for the brother who felt oh so left out of the cancer attention.
Gifts: A thorough, but not exhaustive list of the gifts we received: legos, iPads, headphones, pearler beads, sweatshirts, stickers, nail polish, boardgames, coloring books, backpacks, candles, bubble bath, dry shampoo, stuffed animals, deck of cards, bubbles, sun hats, swim goggles, funny glow in the dark bracelets, fancy engraved bracelets, comfy blankets, slippers, pajamas, essential oil diffusers, melatonin (a lovely gift!), eye covers for sleep, black out curtains and 3M strips for the hospital, a large tote bag, water bottles, journals, kids books, adult books, joke books and more.
Books: Here are a couple books that would be great ideas to send along to a newly diagnosed family.
- The Perfect Shelter by Kane Miller
- The Great Katie Kate Tackles Questions About Cancer by M. Maitand Deland
- The famous hat (Special Stories Series 1) by Kate Gaynor
- Everything Happens for a Reason: And Other Lies I’ve Loved by Kate Bowler
- Wintering: The Power of Rest and Retreat in Difficult Times by Katherine May
- My book– Just kidding, I don’t have a book, yet…….
- Dinning- These are super helpful for ease and convenience, not to mention all the eating out that is done going to or coming home from long hospital days. Also, depending on the hospital, there may be ways to have restaurants deliver inpatient. Search the area around the patients hospital or home and find the restaurants. For example, at Children’s Colorado there is a Dazbog Coffee in the lobby, and across the street there is Panera, Chipotle, Noodles, and Smashburger. Limit asking the parents “Hey, where should I get a gift card?” Because the open ended questions are impossible to answer when you are in the thick. You could ask, “Do you prefer Chipotle by the hospital, or Jamba Juice near your house?”
- In-hospital dinning- Many hospitals have local coffee shop locations inside the lobby. For example, Children’s Colorado has a Dazbog and luckily that Dazbog sells gelato and luckily that gelato has worked to bribe Beau at many appointments. Check the hospital website!
- Shopping- Turns out when a child takes steroids for 28 days straight and goes up two clothing sizes, a family has to buy new clothes. Could the family cover the cost, perhaps, but showing up with a Target gift card and a note that says, “I can’t take this away, but I can fund you wandering Target for an hour,” could help lighten the emotional load. Using a gift card to buy anything can feel like free money (am I right??) and sometimes a cancer parent just needs the gift of some free money.
- Gas/Fuel/E470 toll- Oh the driving. This is a great way to show-up for a family in a practical way. My MOPs team donated over $300 in gas cards. It was not only practical, but also allowed for tender moments filling up at a gas station to remember that even though I felt quite alone, people were showing up even there.
Grocery runs- Encourage the family to sign up for Instantcart and/or Whole Foods Delivery (Amazon). Always, but especially with COVID, grocery delivery is convenient and safe. It also allows a parent to add things to a cart when they are laying in bed at night staring at the ceiling, wondering if everything would be solved if they just had enough holiday specific coffee creamer and an extra bag of Have’a tortilla chips.
One friend of mine would randomly and without fanfare, drop off a bag or two of groceries on my front porch. It’d be a collection of fruits, some veggies, perhaps a bag of chips or popcorn, etc. It wasn’t anything special, it was unplanned, but was always a welcome addition and expression of thoughtfulness. This same friend often texted, “Hey, headed to the grocery by your house, can I get your anything?” And 9 times out of 10, I didn’t reply, but she kept asking. Always keep asking.
Venmo- Every couple months I get a Venmo from my friend with the message “Buy yourself a drink, coffee or vodka, you choose.” or something equally witty. I adore this, for many reasons. It’s sporadic. It’s a little reminder that even though the dust has settled from diagnosis and people have adjusted into knowing us as “the cancer family,” it will never feel completely normal. An extra coffee or an extra cocktail is always welcome to a cancer mom. Promise.
Do things for them
Errands & chores: I had a friend who every couple of weeks would text me, “Hey, making Amazon returns to Kohl’s this week, let me know if you have anything to return.” Or another friend who would offer, “Friday I am running errands, let me know if you need anything, I will be everywhere- post office, grocery, etc.”
Mow their lawn. Shovel their snow. Take their garbage and recycling to the curb and back on trash day. Be their hands and feet.
Help them celebrate holidays: Beaudin was diagnosed a couple weeks before Selah turned 1. It felt impossible to consider planning a birthday party for her inside of the trauma. And equally impossible to not celebrate her very first birthday. So, my friend offered to bring some Whole Foods cupcakes and a couple party hats and celebrate after dinner one night. We’d sing the song, get the pictures, and be in bed by 8pm.
Help the family celebrate in all the simple ways, that to them, will no longer feel simple. One of the things I grieved about cancer was that I didn’t have any brain space for simple things like funny shamrock glasses on St.Patty’s day, or spider & ghoul window decals at Halloween. Did my family survive without those seasonal details? Sure. But it’s those small things that help make a house a home, so to speak. Sometimes it may be asking if you can help with the entire task, like building an Easter Basket, other times it may be just showing up with a front porch delivery of seasonal fun. Here are just a *couple* of ideas.
- Valentine’s Day- Chocolate, candy, heart stickers. Flowers, just buy the mom flowers!
- Easter- Deliver items to add to an Easter Basket or text and ask if you can just create an entire basket for them.
- Mother’s/Father’s Day- Send a card detailing what a kick-ass job the parents are doing. Drop off a package with stuff just for the parents.
- Memorial Day- Swim googles, bubbles, a new beach towel, a geranium for the front porch.
- Fourth of July- Deliver sparklers, pop bottle rockets and festive red, white, and blue shirts.
- Christmas- Send the mom an amazon list with all the items you purchased as stocking stuffers for her to have ideas for her own stocking stuffer purchases.
Donate Blood! This is such a practical way to show-up for a family in a way that is literally life saving. You can often find places to donate blood with a simple google search, or reach out to the local children’s hospital. Donating blood is something that can be done anywhere. Though your exact blood won’t go to the exact child, blood donations is a perfect example of the phrase, “All boats rise with the tide.” Be the tide.
Snail Mail- A friend of mine set-up a Sign Up Genius calendar where people could sign-up to send Jude (the middle, non cancer, sibling.) snail mail every week. With all the pomp and circumstance Beaudin was getting from cancer, this special delivery was very much appreciated by Jude.
Just Be There
Helpful things to say:
- This feels so hard, I am sorry.
- Wow, I am so proud of you. You are going a great job.
- How are you feeling, today?
- Hey, I’d love to hear how clinic went this week.
- Thanks for keeping us updated. I know you are busy, but I love your updates.
- I would love to help you this week, can I come over this Monday at 9:15am and take the kids to the park for 2 hours.
Less than helpful this to say:
- Everything happens for a reason.
- How are you?
- Don’t worry, it’s going to be fine.
- I don’t know how to help you.
- You feel so distant.
- I don’t know what to say.
- Would you want dinner sometime?
What not to say:
It is easy to get caught up in feeling like you don’t know what to say, or how to help, or what to do. And that is a fair feeling- it is hard to watch someone you care about suffer. I hope that this post encourages you with ideas of how you can operate from your own strength and help lighten to load of your friend.
Have you experienced friends showing up to help you during grief and heartache? If so, what tangible actions or items helped? What would you recommend from this side of the experience?