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.

Household

•  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.

•  Take care of pets or livestock.

•  Mow grass, shovel snow, rake leaves, water plants, and weed gardens.

•  Clean the house or hire a cleaning service.

•  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.

A child life specialist shared the following suggestion:

Siblings

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.

•  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.

Psychological support

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.

•  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.

•  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.

•  Ask what needs to be done, and then do it.

•  Give lots of hugs.

Financial support

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.

•  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.

•  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.

•  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.

•  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.

•  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.

•  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.

Religious support

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.

•  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:

One mother’s thoughts about accepting help:

What to say (for friends)

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.)

•  “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.)

Parents also suggest the following things:

•  Rather than say, “Let us know if there is anything we can do,” make a specific suggestion.

•  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.”

•  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.

Losing friends

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.

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.