Like family, friends can cushion the shock of diagnosis and ease the difficulties of treatment with their words and actions. Mother Theresa once said, “We can do no great things—only small things with great love.” It is a given that the family of a child being treated for a brain or spinal cord tumor is overwhelmed.
Helpful things for friends to do
The list of helpful things to do is endless, but here are some suggestions from parents who have traveled this hard road.
- Provide meals. It is helpful to call in advance to see if anyone in the family has food allergies or if there is something special the child with cancer or the siblings would like to eat.
We found that the most helpful thing was when people brought us food to eat while in the hospital (where food is scarce for everyone but the patient), and also while recuperating at home. Often feeding ourselves took a back seat to caring for Ayla. This is not conducive to garnering energy to care for someone else!
Our closest friends invited us for dinner every Friday night for the year and a half that Ethan was in treatment. She said that she knew we wouldn’t feel like it, but we needed to get out and practice being normal until we actually felt more normal. At first it was horrible—I was so anxious and sleep deprived that I could barely function, but as the year progressed, it was the thing I looked forward to most each week. I wasn’t sorry to see treatment end, but I really did miss those Fridays night dinners.
- 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.
For many of the families I work with, allowing acquaintances into the home to clean and cook is just too personal and uncomfortable to allow 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 were very welcome: restaurant/fast food certificate, baskets of beauty products mysteriously left on the doorstep, journals, phone cards, movie rental cards, gas cards, and Polaroid film and camera left at the doorstep. 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 15, 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.
- Baby-sit 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 sibling(s) somewhere fun to get their minds off of the stresses at home. Find out what they would enjoy, such as going to the park, a sports event, miniature golfing, bowling, the zoo, or a movie.
- Invite sibling(s) over for meals.
- If you bring a gift for the sick child, bring something for the sibling(s), 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 sibling(s) with homework.
- Drive sibling(s) 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 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, such as sharing neighborhood and school news.
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 videos, rub-on tattoos, and board games.
- If one parent has to leave work to stay in the hospital with the sick child, coworkers can send messages by mail, email, or social media.
- If you think the family might be interested, ask the social worker at the hospital to find out 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 email, 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.”
- Baby-sit the sick child so the parents can go out to eat, exercise, take a walk, or just get out of the hospital or house.
Constance and Michael and their son Byron were the only friends who always said, “Whenever you’d like us to watch Jamie, you just let us know,” but because his seizures weren’t controlled, we hesitated. It was literally 2 years later that we finally took them up on their offer.
- Ask what needs to be done, 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 the next greatest gift after the life of the child and the strength of the family. It is estimated that even fully insured families spend 25 percent or more of their income on co-payments, travel, motels, meals, and other uncovered items. Uninsured or underinsured families may lose their savings or even their homes. Even families with full health insurance, such as those in Canada, have additional expenses that are not covered. Most families need financial assistance, so following are some suggestions for ways to help.
- Start a support 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 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 other coworkers’ leave so they won’t have their pay docked.
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; this way 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 church or work to give the family informally.
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.”
- Collect money by organizing a bake sale, dance, 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 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 (or enter into a computer) the voluminous paperwork. Making the calls and writing the letters over contested claims or errors in billing can also be very helpful.
I am the one handling all of the administrative duties for the family. We have learned when Kevin gets his MRI to ask the techs to make a copy for us right then and there. I have to keep copies of everything regarding Kevin’s treatment and surgery, including pathology reports, second opinion consults, lab reports, etc. I now have copies of all MRI films, all of the hospital records, every report that was ever written, and all of the radiological reports. I make tons of copies of these in case they’re ever needed.
Help from schoolmates
Talking to insurance people really hits a sore spot with me; right from the beginning of the call, there is a menu with many options to choose from, and it can take 10 minutes if you are lucky to get a real live person on the phone. I have, many times, asked for supervisors, demanded and insisted that expediency is necessary. I have learned to take the person’s name, their title, and write down time and date on every conversation I have. It is a time-consuming job.
The friendships and social lives of children often revolve around school. Trying to maintain ties with school, teachers, and friends will help your child make a smooth transition back as soon as he is able.
- Encourage visits (if appropriate), cards, emails, 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 an instant picture 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.
On a Thursday, our second grade son Christopher was diagnosed with a pilocytic astrocytoma of the cerebellum the size of an orange. By Friday morning, Christopher’s classroom, Room 35 at Carpenter Avenue Elementary School, was already making Get Well Pizza cards for him. One of his teachers sat down with the kids and talked about what it would be like in the hospital, and an appointed person from the school community called us regularly for updates and passed on prayers and loving regards from families and staff. We had amazingly touching responses from many school parents, teachers, coaches, and even our principal.
The PTA president came to visit and brought a huge card signed by all of Christopher’s classmates, teachers, and other Carpenter friends. She had also lined up parents from Room 35 to bring dinners to my husband Jim and I for the entire upcoming week. As the weeks went on, the love and support just escalated. Christopher found his greatest joy throughout the whole hospital ordeal was receiving more incredible Beanie Babies than he could have ever imagined getting.
Our whole family has a view of Carpenter Avenue Elementary School that has changed us forever. They are an extraordinary community of families that I wish every family in need can experience.
- 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, baby-sat 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 yard work. 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 aren’t helpful. 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.)
- “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,” etc. (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.)
- “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. For instance, “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 (for example, 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.
- Refrain from saying, “I don’t know how you do it,” or “You’re so strong.”
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.
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 can’t cope and either suddenly disappear or gradually fade away.
My daughter Lauren was diagnosed with a very rare and aggressive cancer. We finished treatment in April of this year, and since that time I have been feeling an overwhelming series of emotions, most of which lie at the bottom of the happiness scale. This past weekend, I finally met with my best friend, who had her first baby in March. Needless to say, I have not been overly involved with her life of late. My own was often more than I could hack. This friend did prove to be a true friend throughout the cancer trip as she visited us often at the hospital. She confessed to me that she missed me so much, and that she sometimes mistook my silence for indifference. I didn’t take offense, as I might have, but rather, this seemed to be the “invite” that I needed to re-enter the world that I had left when Lauren was diagnosed. The fact that I had value as a friend, and not just as a caregiver, was a wake-up call. Throughout the past year, I had isolated myself from everyone from my old life, and was starting to think that maybe I would never make it back. Maybe now I can pull back the cobwebs and struggle back.
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 both our kids gifts, 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. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites