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"Our Nurse Practicioner told me early on that the most flexible families are the successful families..."
- Annie Gould, parent
Because parents of newly diagnosed children have trouble describing their needs, researchers spoke with a group of parents who have been through the experience and asked them what types of support helped the most. They outlined the following suggestions.
Notify people about the family situation: Gather phone numbers and emails of everyone who needs to be notified. Designate one person to call, email or write everyone on the list to let them know about the new cancer diagnosis. The message should be reviewed by a family member for what is said and how it is said. If the family is setting up a website, blog, or other electronic communications tool, let people know so they have a way to stay in touch. The message can include a person who can be contacted for updates or to help out. Remember that HIPPA regulations do not permit medical personnel to talk to people outside the family without permission.
Set up a cooking schedule. Many families really appreciate having meals delivered since it can be very difficult to find time to shop and cook. Often, if the main cook in the family is in the hospital with the child, the remaining family appreciates having home-cooked meals. Some families like food every day, others prefer meals delivered two or three times a week. The coordinator can set up a calendar. Because families are not always home, it works well if cooks can leave meals in a cooler on the front porch or by the back door. Ask the family whether they like the cook to ring the bell and say hello or not. This will vary depending on how busy they are, fear of infection or other factors. Try to use recyclable leftover containers and let cooks know you do not expect them to return the containers to you. Or, a family member can leave washed containers by the cooler to be picked up by their owners. Remember to be sensitive to food preferences, cultural or religious food restrictions, and allergies. These should be described to those who volunteer to cook and can be easily shared among those coordinating the meals, on the websites, via email, etc. It’s also good to allow cooks to see what others have prepared to avoid making the same food multiple days in a row. The coordinator can create schedules using sample forms here, or can use online resources, such as a shared Google calendar or a program where people can sign up to cook and receive a reminder. There are a number of websites to help a community organize meals for a family when someone is sick that allow you to include the family’s food preferences, address, and the names of who is cooking for them, and when.
Carpools: It is important that the healthy children in the family are able to carry on with their usual routine. Siblings might need a ride to and from school. If a child in the family routinely plays soccer, takes piano lessons, or comes home late from a relative’s house, after-school program, church, or work, she or he might need a ride. It may also be helpful to bring a brother or sister to the hospital for a brief visit so the parents can stay there, but still see their healthy children and all be together. Visits by siblings are usually better as short visits. Your driving them may help these visits to happen more frequently so the family feels less torn between children and hospital-based responsibilities.
School: If there is a parent of a child who has children in the same class as the patient and/or his or her siblings, that parent can periodically update the family on the issues in the classroom, keeping the family in the loop about school activities at a time when it is easy to miss such news.
Blogs: if the family wants to set up a blog site (a place where family members post photos and write about what is happening at the hospital or for the sick child to keep others informed), a person with computer expertise can help them. Blogs can be used to communicate how things are going, and can lead to support for the family. But blogs have down sides too. Some people only want to write about positive things, others include too much detail. Two of the most popular free blog sites used by families and young adults who are impacted by childhood, adolescent, or young adult cancer are http://www.caringbridge.org/ and http://www.mylifeline.org/
Financial Support: Sometimes parents from a child’s school or neighborhood, colleagues from work, or members of the family’s religious institution initiate fundraising to help the family with extra expenses. Not only do such activities, no matter how small or grand, help provide necessary resources, but they also help make the family feel emotionally supported in their journey through childhood cancer. In raising funds for another family, it will be important for you to review any tax implications for the receiving family. Some families may feel uncomfortable about receiving money or about having money raised on their behalf, but there are many extra costs that often come in conjunction with lost income when a child is sick with cancer. Other expenses include medication costs, additional childcare, take-out food, parking, new clothing due to child’s weight loss/gain, travel and rental expenses when care is far from the home, and in the case of very sick children, palliative care and/or home care assistance.
Grocery shopping: Asking a parent to complete a list of items the family typically eats can help identify what groceries would be helpful for the family. If the family prefers to do their own grocery shopping, you can purchase gift certificates to the store where they usually shop. Also, some areas have delivery services, such as www.peapod.com, that will deliver groceries directly to the family at a convenient time.
Bring lunch to the hospital.
Pack a caregiver’s kit of food for the hospital including sports bars, boxed milk or juice, nuts and dried fruit. (A parent who spends several days in a row at the hospital will not always eat well.)
Sibling outings: take the sibling to his/her sports game, out for ice cream, or to a movie. Invite siblings to be a part of fun activities with your family, to help them feel special and wanted.
Sibling acknowledgement: Send fun mail addressed to siblings -- individually, by name!
Give a family or caregiver a break: Sit with the child with cancer in the hospital so parents can do other things.
Household support: Offer to take the family dog for a walk, or help take care of other pets. Sort mail, help organize medical bills (even set up a spreadsheet to keep track of them), and/or help with cleaning.
Pick up out-of-town relatives at the airport when they come to visit. It allows friends to get to know the family, and it allows the family members to ask questions and be prepared for the visit.
Errands: Take the child or sibling on an errand to get a necessary item (school supplies, soccer shoes, Girl/Boy Scout uniform, etc.)
Overnights: have the siblings (or any/all of the children) stay overnight with you. This may allow parents to have a much-needed chance to have a night together.
Use your special skills (professional or hobbies) to help out the family. For instance, if you are an accountant by trade, offer to help balance their checkbook, do their taxes, or talk over finances. If you are a quilter make a special quilt for the family. If you are famous for making raisin bread, make a loaf once a month and drop it off.
Knit a hat for the child with cancer. Use very soft yarn. You can even knit matching hats for the siblings.
Make a video of yourself and others who the child loves.
Print out information: In some instances, families do not have access to computers or the Internet while at the hospital or at home. But it is common for medical providers and friends to tell them to “look it up on the Internet.” If the family does not have access to a computer, offer to look things up for them, print it out, and bring them a hard copy of the information they request or lend them a notebook or laptop.
Provide a listening ear: Ask the parents, siblings, or the child with cancer how they are doing. Listen. Be a caring presence. A supportive and positive ear is important. Parents, often afraid and overwhelmed, need all the love, compassion, and positive energy they can get!
Support caregivers in getting exercise: Exercise can help reduce stress and improve well-being in general and in caregivers of children with cancer. Neighbors or friends could organize a regular time to walk once a week or more often as schedules allow. It can help to provide a caregiver with both exercise and social time.
Donate blood or platelets. Children with leukemia, as well as other diagnoses, receive transfusions during their treatment. While in some states, individuals cannot designate that their blood should go to a particular child, giving blood is an action that is appreciated by the family.
Donate hair (10 inches or longer) to be made into wigs by Locks of Love. http://www.locksoflove.org/
Visit the family: You can visit the family at home or in the hospital. It is usually best to call first. If you bring gifts, it can be thoughtful to include a gift for siblings too. Magazines, puzzles, videos, socks, toys, and art supplies are often appreciated by the child in treatment as well as siblings. Be sensitive to tired children and parents, and keep the visit short if that seems appropriate.
Donate your extra sick leave (if your workplace allows this) to a parent/co-worker who needs the coverage.