Like family, friends can cushion the shock of diagnosis and ease the difficulties of treatment with their words and actions.
Helpful things for friends to do
Mother Theresa once said, “We can do no great things—only small things with great love.” The family of a child being treated for cancer is overwhelmed. The list of helpful things to do is endless, but following are some suggestions from parents who have traveled this hard road.
It is very helpful if a friend creates an online task calendar. These free programs allow the family to list tasks they need help with (e.g., meals, pet care) on certain dates such as scheduled hospitalizations or clinic days. Then, helpers can sign up to take care of chores or be on call for tasks such as snow shoveling or lawn mowing. You can find a list of online calendars used for providing help to families of children with cancer in Appendix C, Books, Websites, and Support Groups.
• Provide meals. It is helpful to find out whether anyone in the family has food allergies or whether there are types of food the family prefers to eat—or prefers to avoid. It is best to be thoughtful when delivering meals, as the family may feel too tired or the child too ill to welcome friends in for an extended chat.
Friends and family delivered home-cooked meals to our house 5 nights a week. My sister-in-law organized it online through Care Calendar. We left a cooler outside because Meg’s counts were so low and we were so exhausted. We had talked to people all day long. We don’t want to chat, we just want to plop down on the couch and heat up that meal. We made a sign for the front door that said, “If there’s a cooler out, please leave food in the cooler and ring the doorbell.” We had one friend who plugged herself into the calendar and cooked for us every Friday night. She loves to do gourmet cooking, and she wrote a little menu for us and brought appetizers, dinner, and dessert.
One of the biggest ways our extended family helped us was by setting up a Care Calendar online for the entire 48 weeks of treatment and procedures. Then they would provide meals based on the specific need. For example, if we were inpatient, it would be gift cards and hospital-delivered meals. Big chemo weeks would be several meals delivered to our home the next couple of days. Full-day infusions meant someone would bring a meal that evening. They worked to anticipate what our needs would be. I was also able to add photos and updates on how she was doing for the volunteers.
• Take care of pets or livestock.
• Mow grass, shovel snow, rake leaves, water plants, and weed gardens.
We came home from the hospital one evening right before Christmas, and found a freshly cut, fragrant Christmas tree leaning next to our door. I’ll never forget that kindness.
• Clean the house or hire a cleaning service.
My husband’s cousin sent her cleaning lady over to our house. It was so neat and such a luxury to come home to find the stove and windows sparkling clean.
• Grocery shop (especially when the family is due home from the hospital).
• Do laundry or drop off and pick up dry cleaning.
• Provide a place to stay near the hospital.
One of the ladies from the school where I worked came up to the ICU (intensive care unit) waiting room where we were sleeping and pressed her house key into my hand. She lived 5 minutes from the hospital. She said, “My basement is made up, there’s a futon, there’s a TV; you are coming and staying at my house.” I hardly knew her, but we accepted. Every day when we came in from the hospital there was some cute little treat waiting for us like a bowl of cookies, or two packages of hot chocolate and a thermos of hot milk.
A child life specialist shared the following suggestion:
For many of the families I work with, allowing acquaintances into the home to clean and cook is just too personal and uncomfortable during such a private time in their lives. It’s just too intrusive. However, these families have shared many stories of anonymous giving. For instance, the following items, mysteriously left at the doorstep, were very welcome: restaurant/fast food certificate, baskets of beauty products, a journal, and gas card. The anonymity helped prevent the family from feeling indebted.
An entire chapter of this book is devoted to the complex feelings that siblings experience when their brother or sister has cancer. Chapter 19, Siblings, provides an in-depth examination of the issues from the perspective of both siblings and parents. Below is a list of suggestions about how family and friends can help the siblings.
• Babysit younger siblings whenever parents go to the clinic or emergency room, or need to be with their child for a prolonged hospital stay.
• When parents are home with a sick child, take siblings somewhere fun to get their minds off of the stresses at home. Find out what they would enjoy, and spend special time with them going to the park, a sports event, minature golfing, bowling, the zoo, or a movie.
• Invite siblings over for meals.
• If you bring a gift for the sick child, bring something for the siblings, too.
Friends from home sent boxes of art supplies to us when the whole family spent those first 10 weeks at a Ronald McDonald house far from our home. They sent scissors, paints, paper, and colored pens. It was a great help for Carrie Beth and her two sisters. One friend even sent an Easter package with straw hats for each girl, and flowers, ribbons, and glue to decorate them with.
We got a lot of care packages, not just for our child with cancer but also for her siblings. It really lifted their spirits too. Cancer is a family battle and the whole family needs to be supported!
• Offer to help siblings with homework.
• Drive siblings to lessons, games, or school.
• Listen to how they are feeling and coping. Siblings’ lives have been disrupted; they have limited time with their parents, and they need support, attention, and care.
There is much that can be done to help the family maintain an even emotional keel.
• Call frequently, and be open to listening if the parents want to talk about their feelings. Also, talk about non-cancer related topics (e.g., neighborhood or school news) to help them feel less isolated.
What I wished for most was that friends and family had been able to call more often to see how we were doing; that someone could have handled my confidence on the good days and my tears on the bad days. It somehow took too much emotional energy to make a call myself, but I valued any phone call I received.
• Visit the hospital and bring fun stuff such as bubbles, silly string, water pistols, joke books, funny movies, rub-on tattoos, and board games.
• If a parent has to leave work to stay in the hospital with the sick child, coworkers can send messages by mail, e-mail, or social media.
• If you think the family might be interested, ask the social worker at the hospital whether there are support groups for parents and/or kids in your area.
• Offer to take the children to the support groups or go with the parents. For most families, the parent support group becomes a second family with ties of shared experience as deep and strong as blood relations.
• Drive the parent and child to clinic visits.
• Buy books for the family if they enjoy reading.
• Send e-mail, cards, or letters.
Word got around my parents’ hometown, and I received cards from many high school acquaintances who still cared enough to call or write and say we’re praying for you, please let us know how things are going. It was so neat to get so many cards out of the blue that said, “I’m thinking about you.”
• Babysit the sick child, and any siblings, so the parents can go out to eat, exercise, take a walk, or just get out of the hospital or house.
Joseph’s kindergarten teacher would come to play with him so we could get out of the hospital and eat and take a break for an hour or so. She just seemed to understand how much we needed that and how hard it would be for us to do it otherwise.
• Ask what needs to be done, and then do it.
A close friend asked what I needed the day after Michelle was diagnosed. I asked if she could drive our second car the 100 miles to the hospital so my husband could return in it to work. She came with her family to the Ronald McDonald House with two big bags containing snack foods, a large box of stationery, envelopes, stamps, books to read, a book handmade by her 3-year-old daughter containing dozens of cut-out pictures of children’s clothing pasted on construction paper (which my daughter adored looking at), and a beautiful, new, handmade, lace-trimmed dress for my daughter. It was full-length and baggy enough to cover all bandages and tubing. She wore it almost every day for a year. It was a wonderful thing for my friend to do.
• Give lots of hugs.
Helping families avoid financial difficulties can be a very important form of support. In the United States, medical bills are the top cause of personal bankruptcy. It is estimated that even fully insured families spend 25 percent or more of their income on co-payments, travel, motels, car maintenance, meals, childcare for siblings, and other expenses that aren’t covered by insurance. Uninsured or underinsured families may struggle to pay even the most basic household bills while trying to keep up with medical bills, and some are forced to lose their car or home when they cannot keep up with payments.
At the same time, families can face a substantial loss of income while caring for their critically ill child. Caring for a child or teen with cancer is complex and intensive, and one parent often needs to leave work for the entire duration of treatment. A single parent usually has no other source of employment income, but may need to reduce hours or take FMLA to care for the child—often causing financial distress. Most families need financial assistance, and there are a variety of ways to help.
• Start a support fund. There are many ways to start a support fund, but certain guidelines should be followed to protect everyone involved. Always check with the parents first. It is important to respect any privacy concerns they may have, and to allow them to have a say over anything organized in their child’s name. Some people are embarrassed to have their personal financial situation or sensitive medical information shared with others in the community, while others are comfortable freely sharing that with anyone. Also, the parents may need to work with the hospital social worker to ensure that any bank account created to assist the family is set up in such a way that it does not endanger any state or federal benefits the child is receiving. Volunteers should not have access to the account, though the parents can designate someone to pay bills for them directly out of the fund,
In a smaller community, a fundraising drive can be as simple as leaving jars at local stores for contributions or sending an email to family, friends, and the local newspaper that includes the address of a bank account where contributions can be dropped off or mailed. A newer method of collecting donations for a family in need is to use an online resource such as www.youcaring.com or www.gofundme.com. You can create a fundraising site with photos and stories from the family and share a link to the site on social media to reach family and friends all over the world. These companies charge fees to host your fundraising page and process the donations, so it is important to carefully read the fine print. Find out more about online fundraising sites in Appendix C, Books, Websites, and Support Groups.
A friend of mine called and asked very tentatively if we would mind if she started a support fund. We felt awkward, but we needed help, so we said okay. She did everything herself, and the money she raised was very, very helpful. We did ask her to stop the fund when people started calling us to ask if they could use giving to the fund as an advertisement for their business.
• Share leave with a coworker. Governments and some companies have leave banks that permit people who are ill, or taking care of someone who is ill, to use coworkers’ leave so they will not have their pay docked for taking time off work.
My husband’s coworkers didn’t collect money, they did something even more valuable. They donated sick leave hours so he was able to be at the hospital frequently during those first few months without losing a paycheck.
• Job share. Some companies allow job-share arrangements in which a coworker donates time to perform part of the parent’s job so the parent can spend extra time at the hospital. Job sharing allows the job to get done, keeps peace at the job site, and prevents financial losses for the family. Another possibility is for one or more friends with similar skills (e.g., word processing, filing, sales) to rotate through the job on a volunteer basis to cover for the parent of the ill child.
• Collect money at work.
The day my daughter was diagnosed, my husband’s coworkers passed the hat and gave us over $250. I was embarrassed, but it paid for gas, meals, and the motel until there was an opening in the Ronald McDonald House.
Finances were a main concern for us because I wanted to cut back on work to be at home with Meagan. Sometimes my coworkers would pool money and present it with a card saying, “Here’s a couple of days work that you won’t have to worry about.”
• Organize a fundraising event. Collect money by organizing a bake sale, dance, spaghetti supper, silent auction, or raffle. Find a vendor to make t-shirts with a supportive message for the child or teen on them and sell them in the community or at the fundrasing event.
Coworkers of my husband held a Halloween party and charged admission, which they donated to us. We were very uncomfortable with the idea at first, but they were looking for an excuse to have a party, and it helped us out.
• Offer to help keep track of medical bills. Keeping track of these bills is time-consuming, frustrating, and exhausting for the parents. If you are a close relative or friend, you could offer to review, organize, and file (either on paper or into a computer spreadsheet) all the stacks of paperwork. Making the calls and writing the letters over contested claims or errors in billing can also be very helpful.
Help from schoolmates
The friendships and social lives of children often revolve around school. Trying to maintain ties with teachers and friends, and keeping up as much as possible with schoolwork and school activities will help your child make a smooth transition back to the classroom.
• Encourage visits (if appropriate), cards, e-mails, text messages, and phone calls from classmates.
Our son had a rough time with fever and seizures during chemo, and he was really missing his routine. His preschool teachers, Kate and Ellie, surprised him one time with a homemade book. They had all the kids pose for a photo for the cover, and each one drew a picture for the inside. He loved it.
• Ask the teacher to send the school newspaper and other news along with assignments.
• Classmates can sign a brightly colored banner or poster to send to the hospital.
Brent’s kindergarten class sent a packet containing a picture drawn for him by each child in the class. They also made him a book. Another time they sent him a letter written on huge poster board. He couldn’t wait to get back to school.
• School friends and civic groups can show their support by doing volunteer work at their local hospital or by participating in, or organizing, cancer-awareness events.
Ethan’s school read Sadako and the Thousand Paper Cranes, which is a story about a Japanese girl from Hiroshima who contracted leukemia after World War II. The crane is the sign of health, good fortune, and long life in Japan. There is a legend that if you fold a thousand origami cranes, you will be granted one wish. Sadako’s wish was that she live a long and healthy life, but she died of cancer 386 cranes short of her goal. Her classmates finished her cranes for her, and paper cranes subsequently became a symbol of peace.
So, the kids at Ethan’s school began to fold cranes for him. Each crane has a wish written on the wing (things like “Cancer Be Gone” and “Ethan, I love your spirit”). Some are the size of a robin, and some are smaller than a dime.
They reached their goal of a thousand last week and they are now hanging (on strands, from one to 10 cranes per strand) on the ceiling over Ethan’s bed. They are absolutely magical to look at, all rotating and casting shadows; and you can actually read each one’s wish on the lower hanging ones. I thought it was a beautiful thing to do.
Following are a few suggestions for families who have religious affiliations:
• Arrange for church/synagogue/mosque members and clergy to visit the hospital, if that is what the family wants.
• Arrange prayer services for the sick child.
The day our son was diagnosed, we raced next door to ask our wonderful neighbors to take care of our dog. The news of our son’s diagnosis quickly spread, and we found out later that five neighborhood families gathered that very night to pray for Brent.
• Have your child’s religious education class send pictures, posters, letters, balloons, or audio or video tapes.
Accepting help (for parents)
As a parent of a child with cancer, one of the kindest things you can do for your friends is to let them help you. Let them channel their time and worry into things that will make your life easier. Think of the many times you have visited a sick friend, made a meal for a new mom, babysat someone else’s child in an emergency, or just pitched in to do what needed to be done. These actions probably made you feel great and provided a good example for your children. When your child is diagnosed with cancer, both you and your friends will benefit immensely if you let them help you and if you give them guidance about what you need.
One father’s thoughts about accepting help:
Fathers have a deep-seated need to protect their family. Yet here I was with a child with cancer, and there wasn’t a single thing that I could do about it. The loss of control really bothered me. The very hardest thing I had to learn was to let go enough to let people help us.
One mother’s thoughts about accepting help:
What to say (for friends)
The most important advice I received as the parent of a child newly diagnosed with cancer came from a hospital nurse whom I turned to when I was overwhelmed with all the advice being offered by family and friends. This wise nurse said, “Don’t discount anything. You’re going to need all the help you can get.” I think it is very important for families to remain open and accept the help that is offered. It often comes when least expected and from unlikely sources. I was totally unprepared at diagnosis for how much help I would need, and I’m glad that I remained open to offers of kindness. This is not the time to show the world how strong you are.
Following are some suggestions for friends about what to say and how to offer help. Of course, much depends on the type of relationship that already exists between you and the family you want to help; but a specific offer can always be accepted or graciously declined.
• “Our family would like do your yardwork. It will make us feel as if we are helping in a small way.”
• “We want to clean your house for you once a week. What day would be convenient?”
• “Would it help if we took care of your dog (or cat, or bird)? We would love to do it.”
• “I walk my dog three times a day. May I walk yours, too?”
• “The church is setting up a system to deliver meals to your house. When is the best time to drop them off?”
• “I will take care of Jimmy whenever you need to take John to the hospital. Call us anytime, day or night, and we will come pick Jimmy up.”
Things that do not help
Sometimes people say things to parents of children with cancer that are not helpful and can even be hurtful. If you are a family member or friend of a parent in this situation, please do not say any of the following:
• “God only gives people what they can handle.” (Some people cannot handle the stress of childhood cancer, and it is painful to be told that your child was singled out to have cancer because they or you are strong.)
• “I know just how you feel.” (Unless you have a child with cancer, you simply don’t know.)
• “You are so brave,” or “so strong.” (Parents are not heroes; they are normal people struggling with extraordinary stress.)
Whenever someone says: “You’re so strong” or “I don’t know how you do it,” answer: “I don’t do it alone,” or “With lots of help” or (if it’s true) “I’m pretty close to losing it completely.” There’s a thin line between being honest about your situation and being oppressive, for want of a better word. In my more cynical moments, I am convinced the world wants us (i.e., the cancer kids/families) to valiantly triumph over hardship with the Movie-of-the-Week-attitude. Well if that gets them to wash my floors, it’s a small price!
I think some of the most supported families I’ve seen on treatment had a knack at keeping people informed about the current situation. I updated the outgoing message on our answering machine every couple of days and people could call our home for current news (a hospice nurse/neighbor gave me that idea). Other friends from the hospital used newsletters, phone chains, announcements in church, etc. Again, my cynical side recognizes that you’re opening up your most personal moments to the public (anyone who called my house and heard the message the day after my son’s stroke probably felt like an intruder) but it’s a way to help people feel invested in your family.
• “They are doing such wonderful things to save children with cancer these days.” (The prognosis might be good, but what parents and children are going through is not wonderful.)
• “Chemo killed my aunt/grandma/sister. That stuff is terrible. Those doctors can’t really cure cancer.” (Cancer is no longer a death sentence. Many people don’t understand that cancer treatments for both adults and children have improved a great deal over the years.)
• “All those chemicals are unnatural! I learned about a guy whose cousin’s daughter used kale juice/essential oils/shark cartilage/ground apricot pits/exotic spices instead.” (Most people are well-meaning, but undermining a family’s decision to seek evidence-based medical care for a child with a life-threatening illness is not supportive.)
• “Well, we’re all going to die one day.” (True, but parents do not need to be reminded of this fact.)
• “It’s God’s will” or “Everything happens for a reason.” (These are just not helpful things to hear.)
• “At least you have other kids,” or “Thank goodness you are still young enough to have other children.” (A child cannot be replaced.)
A woman whom I worked with, but did not know well, came up to me one day and out of the blue said, “When Erica gets to heaven to be with Jesus, He will love her.” All I could think to say was, “Well, I’m sorry, but Jesus can’t have her right now.”
Parents also suggest the following things:
• Rather than say, “Let us know if there is anything we can do,” make a specific suggestion.
Many well-wishing friends always said, “Let me know what I can do.” I wish they had just “done,” instead of asking for direction. It took too much energy to decide, call them, make arrangements, etc. I wish someone would have said, “When is your clinic day? I’ll bring dinner,” or “I’ll baby-sit Sunday afternoon so you two can go out to lunch.”
• Do not make personal comments about sick children in front of them, such as, “When will his hair grow back in?” “He’s lost so much weight.” or “She’s so pale.”
When in the mall or other public place, strangers had no qualms about staring at Ayla (age 3) who had an eye patch, tubes that sometimes snuck out from under her shirt, and no hair. We combated this by telling her that she was so absolutely stunningly beautiful that people just could not help but stare at her. We really played this up and tied it in to her belief in Snow White, Cinderella, etc. Many times we let her and her sister Jasmine wear their princess costumes out in public. Then they really got a kick out of people staring. I also did not hesitate to tell people that she had cancer when they asked what was wrong with her. I never minimized what she was going through. We talk about cancer freely and how doctors are there to fix you up if you get this.
• Do not do things that require the parents to support you, such as repeatedly calling them up and crying about their child’s illness.
• Do not ask “what if” questions: “What if he can’t go to school?” “What if your insurance won’t cover it?” Or, “What if she dies?” The present is really all the parents can deal with.
It is an unfortunate reality that most parents of children with cancer lose some of their friends. For a variety of reasons, some friends just cannot cope and either suddenly disappear or gradually fade away.
We had friends and family we thought would be the greatest sources of support in the world. Yet, they pulled away from us and provided nothing in the way of help, emotional or otherwise. We also had friends that we never expected to understand step up in surprising ways. My wife’s friend, Leslie, a busy single woman who we would never expect to do such a thing, actually negotiated time off with a new employer so she could fly from her home in Tampa and help out after Garrett’s transplant. She stayed with us for over a week, then came back a few months later to do it again.
A couple of my SCUBA diving buddies who we liked, but didn’t know well, have since become our best friends. They would visit us in the hospital, bringing gifts for both of our kids, and giving us a much-needed break. They were the only folks who regularly came by when Garrett was home after the transplant and who always followed our strict rules without complaint. Of course, the best support we had was from other parents of kids with serious illnesses or problems.
Telling your friends about cancer is difficult, but it’s not as hard as keeping it a secret would be. Fighting this cancer has been a family effort and, frequently, an effort involving our larger circle of friends. The more people we’ve been able to call on for support, the better. We’ve had to keep in mind that we’ve had an opportunity to adjust. But, the news is brand new to our friends, and it can be a shock. People often don’t know what to do or say when they’ve been told that someone they care about has cancer.
After we’ve given them some time, and when they ask what they can do, we tell them something constructive: mow the lawn, take back the recyclables, go to the store, bring over a pizza on Friday night, whatever would help.
Before my son was diagnosed, I had no idea what this experience was like, and I try to remember that my friends don’t really know either, unless I tell them. They can’t know the sleepless nights, the anxiety over tests, the fear when your child says he doesn’t feel well, or the terror that we might lose our precious child. Some of us have found great support and others none. I hope your family and friends come to your side.
I want to say that I hope that cancer does not become your life. For us, it used to be an “elephant in the living room,” and now it’s maybe a “zebra in the kitchen.” There are times when it demands everything you can give, no doubt, but there will be moments when there is time for the rest of your life.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups