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 newly diagnosed child is overwhelmed. The list of helpful things to do is endless, but here are some suggestions from parents who have traveled this hard road.
One of the nicest things that friends did was to bring us a huge picnic basket full of food to the hospital. We spread a blanket on the floor, Erica crawled out of bed, and the entire family sat down together and ate. Most people don't realize how expensive it is to have to eat every meal at the hospital cafeteria, so the picnic was not only fun, but helped us to save a few dollars.
• Take care of pets or livestock.
• Mow grass, shovel snow, rake leaves, 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.
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. 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 waiting room where we were sleeping and pressed her house key into my hand. She lived five 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.
It takes an entire chapter to deal with the complex feelings that siblings confront when their brother or sister has cancer. Chapter 16, Siblings, provides an in-depth examination of the issues from the perspective of both siblings and parents. Below is a list of suggestions on how family and friends can help with siblings.
• Baby-sit whenever parents go to the clinic, emergency room, or for a prolonged hospital stay.
The mother of a secretary from my office called me, introduced herself, and offered to care for my newborn daughter while I spent time at the hospital. I had never met this woman, but she turned out to be a real lifesaver and a jewel. She would come every day, bathe, dress, and feed my daughter, clean up the house, and stay from morning until evening. She did this for several months. I will never forget her for being so kind. I would not have been able to get through those first few difficult months without this type of support—and to find it in a complete stranger certainly renewed my faith in mankind!
• When parents are home with a sick child, take sibling(s) to the park, sports event, 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 ten weeks at a Ronald McDonald house far from our home. They sent scissors, paints, paper, 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 keep on 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 the neighborhood and school news.
• Visit the hospital and bring fun stuff like bubbles, silly string, water pistols, joke books, funny videotapes, rub-on tattoos, board games.
• Bring lots of prepaid phone cards to the hospital so the family can call distant friends and relatives.
• If one parent had to leave work to stay in the hospital with the sick child, coworkers can send messages by mail or tape.
One very neat thing that was an emotional boost was that my friends and former coworkers from Kansas faxed us messages and pictures and things to Meagan while we were in the hospital. It was very nice to get such fresh messages—it really shortened the miles.
• If you think the family might be interested, call Candlelighters or the social worker at the local hospital to find out if 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 parent and child to clinic visits.
• Buy books (uplifting ones) for the family if they are readers.
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 that the parents can go out to eat, exercise, take a walk, or just get out of the hospital or house.
• If the child has a type of leukemia that may require a stem cell transplant, organize a drive to get people typed and entered into the marrow registry. Contact the National Marrow Donor Program at (800) 654-1247 or http://www.marrow.org.
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 that 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 three-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.
Grandpa Fred is a 71-year-old retiree who has been visiting pediatric oncology patients at Children's for almost twelve years. He begins his day at 9:30 every morning on the teens ward, then he moves on to visit the younger patients, the playroom, and the clinic. Grandpa Fred always takes pictures of his young friends, very good ones, and has filled 23 photo albums with them. Fred has two prints made of each picture he takes and gives one to the families. He also helps Santa on Christmas and visits on Halloween. He has been the camp manager at Camp Good Times every summer for eight years. Fred feels that a hug is more important than anything he can say to someone. "Listening and giving a hug," he says, "That's the best I can do."
Helping families avoid financial disaster 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 under-insured families may lose their savings or even their house. Even families with full health insurance, such as those in Canada, have additional expenses that are not covered. Most families need financial help. Here are some suggestions:
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.
• Help the family apply for financial aid from the Leukemia and Lymphoma Society by calling (800) 955-4572 and asking for the "Guidelines for Patient Aid Program Application and Reimbursement Process."
• Share leave. Governments and some companies have leave banks that permit persons who are ill or taking care of someone who is ill to use other coworkers' leave so they won't have their pay docked.
• Job share. Some families work out job-share arrangements in which a coworker donates time to perform part of one job to enable one parent to spend 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 would be for one or more friends with similar skills (e.g., word processing, filing, sales, etc.) 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.
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."
My husband's coworkers didn't collect money, they did something even more valuable. They donated sick leave hours, so that he was able to be at the hospital frequently during those first few months without losing a paycheck.
• Collect money by organizing a bake sale, dance, or raffle.
Coworkers of my husband held a Halloween party and charged admission for 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.
• Keeping track of medical bills is time-consuming, frustrating, and exhausting. 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 are very helpful.
Friends and social life 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, 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 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 for the person it is folded for written on the wing (things like "Cancer Be Gone" and "Ethan I love your spirit"). Kids used favorite music, the school newsletter, or copied favored poems, in addition to using fancy paper, or decorating the finished crane. 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 1 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 then 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:
• If the family goes to church, contact a member of the clergy.
• Arrange for church 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 his diagnosis quickly spread, and we found out later that five neighborhood families gathered that very night to pray for Brent.
• Have the child's religious education class send pictures, posters, letters, balloons, or tapes to the sick child.
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 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 elses 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 immensely benefit if you let them help you and give them guidance on what you need.
One fathers thoughts on accepting help:
Fathers have a deep-seated need to protect their family. Yet here I was with a child with leukemia, and there wasn't a single thing that I could do about it. The loss of control really bothered me. The very hardest thing that I had to learn was to let go enough to let people help us.
One mothers thoughts on accepting help:
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.
The following are some suggestions on what to say and how to offer help. Of course, much depends on the type of relationship that already exists, but a specific offer can always be accepted or graciously declined.
• I didn't call earlier because I didn't know what to say.
• 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 him up.
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Although nobody gets a parenting manual or bible in the delivery room, it is our duty as parents to try to make our kids as well rounded, happy and confident as possible. It is a lot easier to bring up great kids than it is to try and fix problems caused by bad parenting, when our kids have become adults. Our children are all individuals - they are not our property but people in their own right.