When our five-year-old daughter was diagnosed with leukemia (ALL) last summer, our world was turned upside down.
Extended hospital stays, twice weekly clinic visits, the side effects of chemo and the constant possibility of unexpected hospital admissions mean stress and exhaustion for all of us — and looming in the background of it all is the unspoken worry: will our daughter get through this?
It’s a hard time in our lives, to say the least, but the amazing outpouring of support from our friends and family has gone a long way to make it easier.
If someone you know has a child being treated for cancer, there are a lot of ways to help. Here are some tips and ideas based on our experience and that of other families we’ve met:
1. Don’t just ask; do. It’s nice to say, “Please let me know if there’s anything I can do.” But we love even more when people don’t leave the ball in our court, but make a concrete offer: “I’d like to bring a meal, if that would help. When would be the best time to deliver it?” or “I’m free this Saturday night. Want me to come babysit so you can have a night out?”
2. Give a gift card. It may seem impersonal, but it’s not. Having a child with cancer can be a major financial strain on families, between related expenses (parking, co-pays, take-out food, etc.) or a parent having to work less or not at all. Gift cards for household expenses like groceries, pharmacy and purchases at places like Target or The Home Depot can be a huge help. (Personally, I always appreciated Starbucks cards, too!)
3. Don’t forget siblings. Cancer is just as disruptive to the lives of “well” children as it is to their brothers or sisters with cancer. Siblings grapple with jealousy, fear, anger and a host of other emotions. If you want to send a gift for the child with cancer, give something equally special to his or her siblings. Not only will the siblings appreciate it; the parents will, too—trust me.
4. Help later. While it’s natural to want to help immediately after a child is diagnosed, don’t forget that cancer can be a long haul. There may be months or even years of treatment and hospital stays ahead. And while cancer quickly becomes the “new normal” for families, the emotional and financial strains remain.
I was thrilled when, just recently—a whole six months after our daughter’s diagnosis—a friend sent us a gift certificate to a gourmet Italian food store that makes amazing frozen entrees. There’s nothing like pulling a delicious, ready-made meal from the freezer after a long, draining day at the clinic.
5. Say something. We are moved and appreciative when friends send gifts, make meals, etc. But we also love getting cards (especially darkly funny ones—but that’s just us), emails, or even simply hearing “I’ve been thinking about you,” when we see friends and acquaintances. It’s a source of great comfort and strength to us to know that people are sending “good vibes” to our family.
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Some friends kept their distance after they learned of our daughter’s cancer, later telling us that they “didn’t know what to say,” or thought that just sending their thoughts or sympathies wouldn’t be enough given the magnitude of our situation, so it was better to keep silent. This couldn’t have been farther from the truth. We don’t need to be handled with kid gloves just because we’ve got a sick child. If anything, we’re tougher than ever.
Of course, all of the above are based on our family’s particular preferences and experiences. But I’ll go out on a limb here and say that if you’re not sure how to support a family dealing with a childhood cancer, you probably can’t go wrong with #5.
Thank you for this insightful article. I work for a Canadian charity that helps families of children with cancer and we have also compiled a list “by parents/for parents” with more suggestions here: http://www.opacc.org/news/?p=1137
These are great tips, thank you for sharing. While my daughter was diagnosed and treated with cancer at a young age, I found that reading children’s or youth picture books served as a powerful uplift for us both. Since they often have positive themes, they give you a dose of hope that is easy to take in. Keep a stack in the house and in the hospital room, too. My memoir about dealing with my daughter’s illness and eventual loss has just been published, Drea’s Dream: An Unfinished Dance if you’d care to read more.
I say amen to this. My grandson Is two on dec 8th ..diagnosed jan8th with pre B ALL standard risk..it has been unlike anything I could imagine. I don’t think unless you experience it people can understand. My daughter also has a 7 month old..I have had to take a intermittent leave at work. My daughter can no longer work. The financial burden has already taken a toll and we are only 3 months in to our 3 1/2 year treatment which does not include count/fever holds. A girl I work with has thrown together some fund raisers which has been very helpful..but I still can’t help but feel funny being on the receiving end. It’s truly hard to explain. The little things no one even considers like the isolation the child and family feels. The fear of relapse at any time. My daughter has started having anxiety and panic attacks. The things we use to worry about no longer get attention, I feel like people think because they heard leukemia is curable..this is no big deal..which some leukemia is curable..but it’s the side effects..infections .relapse that takes these children..the daily irritability my grandson…deals with the thrush ..the sore open rash on his bottom..the night sweats.,nausea..vomiting..poor appetite..forced meds..port in his chest wall that has to be accessed frequently..no one knows of this..they just know he has leukemia..I really wish there was more awareness of what a family with a child who has cancer deals with..I never knew until I now face it…I don’t want no one to learn this way…I thank u for this article…
I know exactly how you feel. Our daughter was dx at 21 months with pre- high risk A.L.L. in June 2011.
Hugs from CA and know that this too shall pass.
Thank you for this! Great tips and ideas, we have traveled this road ourselves.
Jane, this is great! I am going to share far and wide.
Five years ago I created a brochure titled, “Helping Children with Cancer” for those who do and do not personally know a family going through childhood cancer. One thing that I’ll add to your GREAT advice is: GIVE BLOOD! No matter anyone’s financial situation, each person can only give one pint per 8 weeks (or platelets every two weeks).
PS I would add a few things NOT to do:
Don’t call or come over crying hysterically, doesn’t help us.
Don’t ask, “What’s the prognosis?”
Don’t ask, “How did he/she get that?” (stupid question!)
Don’t NOT say anything. (the ultimate worst).
And I so agree with the fact that the people who help the most simply DO. When our brains are fuzzy, we don’t always KNOW what we need when asked. We had friends who provided a meal every Wed. night. We would come home to a cooler on our front porch every Wed. THAT is helping!
Jane –
My daughter received a heart transplant at the age of 15 months – then this past year she had a bone marrow transplant (she is now 20 yr). I’ve lost count of the the number of hospitalizations – your advise is great and so helpful for the ones who want to help.
I’ve had gift certificates for dinners, friends have done our yard work, cleaned our home, cared for our pets. The best was around Christmas a few years ago during a really bad time – I was bone weary, the rest of the family was worn out too and my daughter was very ill – my sweet next door neighbor and her bible study class came in and decorated my house for Christmas while we were in clinic all day. I was having a hard time with regular day to day, much less trying to get Christmas in place. What a blessing – we have said all along the only way to travel this awful journey is Faith, Family and Friends!!
One more thing to suggest – if the family has a blog or caring bridge site with updates on the child’s condition, please read it before asking how things are. While it is great to be open to the parents talking about how things are going, it’s even better to let them just talk without having to update the 3rd/30th person that day, especially if it’s been a bad day.
Thank you Jane, for your help in encouraging all of us who have a loved one dealing with cancer. When I heard of my three year old, great-niece’s leukemia diagnosis on Easter Sunday, I felt I wanted to do something, but wasn’t sure what that was. I called the family, of course, but since we are three and half hours away, I wasn’t sure if I would be in the way or of some help. I decided I needed to just pack up some food to deliver to the family and go. The Good Lord would take care of the rest. And he did, she is going through a difficult time and wanted to be left alone. So many people coming in and out of her hospital room, all day long, I don’t blame her. When she told me I need to go home (my nephew said, don’t take it personally, I didn’t.) I said that’s okay and told her I love her and gave her some space. We shared some wonderful moments in the two days I visited and I plan to go back. Hugs are always appreciated, and some cash and gift cards are always needed. Ronald McDonald House has been wonderful, and since their car broke down, they have been using my sister-in-law’s. Things, although always difficult help to make us stronger. We are praying for a miracle as we all do for all the children battling this ugly disease. Blessings to you for your guidance!
Jane this is sooooooo perfect, my 16yr old baby girl was diagnosed with localized Bone Cancer 03/25/13, I had to stop working so we have no income; GAS CARDS are like HEAVEN to me, making the 2hr trip to the Children’s Hospital in Atlanta every week is exhausting in itself, receiving gas cards for the trips is a HUGE LOAD LIFTED 🙂