Five Ways to Support Families Dealing with Childhood Cancer

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By Jane Roper

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.

Jane Roper

photo credit: Sharona Jacobs

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.

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.

Jane Roper is the author of a memoir, Double Time: How I Survived–and Mostly Thrived–Through the First Three Years of Mothering Twins (St. Martin’s Press, 2012), and a novel, Eden Lake (Last Light Studio, 2011). She received her MFA in fiction from the Iowa Writers’ Workshop, and her writing has appeared on Salon, Babble, Poets & Writers, The Rumpus and elsewhere. Jane lives in the Boston area with her husband and twin daughters.

34 Comments:

  1. Dear Jane,

    Thank you for sharing your story and personal insights. It was touching to read and I’m sure will help many who are unsure of what to do.

    When our founder, Sue McCollum, underwent her treatment, she wrote personal letters to her family stating what she wanted from them i.e. calls or hugs.

    Our prayers are with you and your family. Keep writing!

    My Blue Dots

  2. Dear Jane,
    I feel as though I totally relived my experience when my son was diagnosed with the leukemia at the tender age of 4. I couldn’t have said it any better and I can’t think of any more suggestions. We actually did a documentary called “Littlest Heroes” in 1994 which portrayed what it’s like to live with a child who is battling cancer. My son was diagnosed in 1992 and today he is a handsome 24 year old who is studying to be an attorney (criminal prosecutor is his interest). For all that he has been through as well as all children who have battled cancer, I can only say that they have something very special inside. They have learned very early in life the importance of family and friends, the importance of support and positive energy, and the importance of unconditional love. They get the big picture of what life is all about. Indeed they are special and they give true meaning to what is important in life. I have learned so many life lessons in this journey and for that I am truly grateful. Thank you again for your writing. It is quiet meaningful and helpful to so many who want to help in a time of need.
    My best,
    Michele

    • Michele,your comment really touched me…..my youngest daughter Joanna was 5 yrs old when she was diagnosed with Leukemia (Jan 19,2012) it has been very ,very hard for her and for all of us but knowing that your son is a survivor gives us more hope….one day our precious daughter will be able to say “I’m a childhood cancer survivor”….I can’t wait for that day!!!!!!

  3. Dear Jane,
    A friend shared your page on my Facebook as I have a 17 month old boy who has had two surgeries and just started chemotherapy for a rare childhood cancer, pleuropulmonary blastoma. I couldn’t agree more with your words and I hope they help those who know people dealing with childhood cancer.

    Best Wishes!

  4. Thank you for writing this. I know that parents, like myself, who do not have children battling cancer, but have gone through other things, can appreciate this as well. It was one of the loneliest times for me and my husband when our daughter went through a trauma. People didn’t know what to say or do so they chose to back off. We would have appreciated all of these things. And thanks for the reminder.

  5. If they could get you parking vouchers for the clinic or hospital if you need to pay while there. Also gift certificates for the hospital cafeteria or coffee cart there.

    Yes, remember the siblings and the parent that stays home trying to feed the family while the other parent is at the hospital staying with the sick child. Those “extra” meals sure help out so you can “maybe” pack one up and go eat as a family at the hospital. We would pack a picnic and take up there to share together.

  6. On more thought….if the family has a loved family pet, offer to help walk the dog, take to vet or whatever is needed. Sometimes those extra unexpected costs of a sick
    animal can really hit hard.

  7. Dear Jane,

    Best of wishes to you and your family, especially your daughter. You are so right about everything you said. My son Mathias was diagnosed with Osteosarcoma (bone cancer ) last summer. It’s been the longest 8 months ever and we are only about 2/3 of the way done with the chemo treatments. As you said, our whole life was upside down from the moment we heard the 4 words no one wants to hear: ”your child has cancer” ! We are so lucky to have an army of people who are willing to help & support us. I am so amazed and surprised how many people (even strangers) have stepped up to help us. We don”t expect anything from anyone, not even family members, but it is so nice when people show their support and just are there when and if we need them. We sure couldn’t go through this if we didn’t have TEAM MATHIAS behind us.

    The only thing I like to add to your beautiful list is, that I asked our friends & family to educate them selves & their kids about cancer and chemo treatment, so we could avoid awkward/unnecessary questions.

  8. Try and stay connected with the family of the child with cancer. It can be a VERY lonely journey and just knowing people care and are still with you goes a really long way.

  9. Hiya, I wish you all well and every success with the illnesses your children face. I have a 5 year old son who has a brain tumour (optic pathway glioma with hypothalamic involvement and growths on brain stem) and has been on chemo for 4 years… he’s had 3 courses of chemo and only 6 months of those 4 years has he had off treatment. Even that was plagued as he relapsed in that time. It’s a horrible thing to go through as a parent and this info is definitely useful to parents such as myself.

    One thing i find really frustrating (and i know people mean well)is people saying ‘how are you.’ Such a simple question but such a complicated answer so I just end up saying okay thank you.

    This may seem naive, but before my child was diagnosed, when i thought of cancer i didnt think of children. Poor innocent souls. It’s such an unknown world that it would do everyone good to learn about it as it is very important.

    kind regards to you all,
    Laura x

    • I know exactly what you mean! Especially given that some days feel very normal, and personally I may feel perfectly fine and happy and in a good mood — about work, or a fun day with the family, or other “normal” things — even thought there’s still this big, awful thing in the background of it all. I feel like if I say “I’m doing great!” people will think I’m not being honest, or am simply a jerk.

      On the other hand, if I say, “Awful and worried and frustrated and exhausted” then I worry they’ll feel awkward and uncomfortable.

      So my standard answer these days is usually “You know, up and down, depending on the week, or the day.” At least it’s honest.

      • Yes yes – this definitely should be somehow added to the article above – “be specific in your questions ” – not general “how are you?” Or “so how is your son?” But rather “how was your weekend together?” Or “how did his surgery go?”

    • Thank you so much for sharing this insight. So instead of asking: How are you, What should we say instead? I am always worried of saying or asking the wrong thing. What would you like your friends to ask about?

  10. These points are perfect for family and friends and co-workers when they know a family who has a child with cancer. My son was older when he was diagnosed and had a wicked sense of humor( SofH helps lots) When chores around the house needed to be done he often said “Remember, I have cancer” It worked sometimes but not always.

  11. 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

  12. 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.

  13. 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.

  14. Thank you for this! Great tips and ideas, we have traveled this road ourselves.

  15. 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).

  16. 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!

  17. 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!!

  18. 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.

  19. 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!

  20. 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 :)

  21. Thank you all for sharing your experiences. My 20 months old daughter has been diagnosed with leukemia on 14 Jun 2013. Me and my wife are in a state of shock since then.
    The days seem to be longer than normal. Our family and friends are supporting us alot but still we are looking for aspiring stories.

  22. Jane, this is such a well-written post, and we’d like to share it with the supporters of our Jay Fund families, who are faced with their world’s being turned upside down. We’d also like to let your New York, New Jersey and Northeast Florida families that we’re here to help alleviate some of the financial burdens they face when their child is diagnosed with cancer. There’s so much we do, but the bottom line is we take the financial and emotional stress off the family, giving them peace of mind, so families can BE THERE for their child.
    Thanks for sharing, and the comments are great!

  23. Thank you for this article. I’m an adult caring for my elderly mother, who has cancer. We just came through a prolonged crisis period during which she was particularly sick. I especially appreciate your first suggestion (Don’t just ask; do.). It would have been so nice these past few months if someone had stepped forward with a pot of soup or a dish of lasagna. I ask for help when I’m really in a pinch, but sometimes I would benefit from a little break, even if it’s not an emergency.

  24. Great post. My 4 yr old son was diagnosed this november with ALL. On his third chemo, he had a fever after due to an infection. We are still in the hospital, 11 days now. It’s difficult. It’s good to find this and be able to share and learn from other person’s experiences.

  25. Thank you so much for posting this! I want to do more for a friend whose daughter has leukemia, but did not want to pester her with silly questions like: what else can i do?…. this posting answered that question without me having to bother her! thanks!!

  26. Does anyone have any advice as to how I can best support my sister? Her 5 year old is 6 months into his treatment of leukaemia and one of the hardest things for them is that they live in a different country to all their family. I talk on the phone with her a lot but I can’t send round meals or babysit because they live so far away. What is helpful from overseas? I want to send a gift pack as now is a particularly hard time (he is in hospital with a virus which is proving very hard to shift) they have 2 other children as well so it’s very hard on them. Any ideas would be great fully received.

  27. My son was diagnosed with a brain tumor in 2011. I wish I’d had this list way back then. LOLToday he’s tumor free. Which honestly still feels a bit weird all the way around. I’m not sure we fit anywhere but I still need titles to define us. It’s been three years since his surgery so bringing it up just confuses people or seems out of place but it was such a big deal that I’m still recovering. I’m not really sure you can ever be normal after your kid is diagnosed with something deadly. Anyway….. thanks for sharing. This is a great list and very useful. Ruthwww.tmiwithruth.com

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