Like family, friends can cushion the shock of diagnosis and ease the difficulties of treatment with their words and actions. 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. This way, 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 in Appendix C, Books, Websites, and Support Groups.

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, and following are suggestions from parents who have traveled this hard road.

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.

One of the biggest ways our extended family helped us was by setting up a Care Calendar online. 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.

Siblings

An entire chapter of this book is devoted to the complex feelings that siblings experience when their brother or sister has cancer. Chapter 17, 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, miniature 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.

• 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.

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.

I’ve had two children diagnosed with cancer. The first time, I felt like it was a burden to ask anyone for help. Really, about 90% of the time I went without rather than ask. After my second child was diagnosed, a friend who was a massage therapist asked if she could come by to chat and give me a massage, and I said yes. Another friend was a therapist who mostly worked with couples. He would visit, let me vent, and really helped me come up with ways to cope with difficult situations. My best friend, who has multiple sclerosis so travel is difficult for her, showed up at the hospital (a 2-hour drive) and splurged for me to have a pedicure. She took me out to lunch and stayed with my daughter so I could go for a walk outside. She brought albums of pictures of our family before cancer entered our lives. It was lovely.

• Drive the parent and child to clinic visits.
• Send email, cards, and 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 called to ask 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.

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% or more of their income on deductibles, 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 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 many 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,

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 volunteers started calling us to ask if they could use giving to the fund as an advertisement for their business.

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.

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.

After my son’s diagnosis, the Board of Directors requested that the balance of my school year contract be paid—even though I was unable to fulfill my obligations. It was handled by using my sick days (I had only been on the job a little over six months) and then maternity/disability. I was expecting a baby eight weeks after Matt’s diagnosis, so I went right into the maternity/disability benefit. How they figured it on paper to carry the rest of my contract, I don’t know. I did not return to my job until the second school year into Matt’s illness. I then began to work on a job-share basis, which I still do. To this day, I have not used any family medical leave time. My agency has been absolutely the exception, and it has been one of our blessings to be working for such a compassionate agency.

• Collect money by organizing a bake sale, dance, spaghetti supper, silent auction, or raffle:

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 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.

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.

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 videotapes.

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.

Asking for help is tricky because no one magically knows what you need. Yet it’s hard to ask for someone to pick up the sibs from school, mow the lawn, or bring dinner. That said, most people have really good intentions. Lots of families I know set up one of those online calendars such as Lotsa Helping Hands that folks can fill in. We had a women’s club in our town (I wasn’t even a member) that decided to adopt our family and they brought meals for months. Adorable little old ladies would drop off meals every day. It was such a lovely thing for them to do.

• • • • •

My best advice is to keep lines of communication open with family and friends. We parents tend to bottle things up, especially when things are at their worst. We often put ourselves on the back burner to keep the focus on our child. When we don’t release that stress and express those emotions, the damage is done and we need to deal with it later. If our child survives, we beat ourselves up for not letting people in more. If our child dies, we beat ourselves up for things we did or did not do. I’ve had two children with cancer—one lived and one died. So, I suggest you let people in, let them help, and be gentle with yourself. You’re doing the best you can.

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.”
• “Would it help if we took care of your dog (or cat, or bird)? We would love to do it.”
• “I walk my dog twice 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 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 not 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.)
• “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.”
• Do not do things that require the parents to support you, such as repeatedly calling them up and crying.

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.

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, 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.