Coping with Wilms Tumor: Helpful Tips for Parents, Family and Friends
You are not alone! Other parents have been where you are now. Here are their suggestions for getting through the experience…
- When friends and family offer to help, accept their assistance. “Trouble is a part of life, and if you don’t share it, you don’t give the person who loves you a chance to love you enough.” -Dinah Shore. (See Tips for Friends and Family below).
- Create a web page to communicate with family and friends about what’s going on with your child. http://www.caringbridge.org has free, easy-to-create pages that allow you to post updates and photos, and also gives well-wishers a place to post messages of encouragement to you and your family.
- Join an email listserv. Other parents have been where you are now, and their knowledge, experience, and support can be invaluable (go to Wilms-Kids listserv or to Facebook and search Wilms tumor).
- If friends or family help with your other children, make sure they know what to do: post a list of daily routines, lessons, nap times, school and bus schedules on your fridge. If you have pets, post instructions for when to feed/what to feed, etc.
- Carry a pad or notebook and a pen. You can use this to journal and/or to make notes. Write down questions for the doctor as you think of them. Jot down the doctor’s answers. It can be very hard to remember things when you’re stressed out; a notebook will really help you keep things straight.
- Don’t go to appointments alone, even when you are expecting good news. If a partner/spouse is unavailable, take a friend. When it is good news, celebrate!
- Take photos at the hospital. Pictures can help you and your child to process and document the experience, and to see the progress that is made.
- Siblings may express their stress at school – let your children’s teachers know what’s going on. Teachers’ understanding and support can really help siblings cope.
- Take advantage of organizations that give sick kids – and their families – practical love and tangible hope. A few of these are:
- If your child has to avoid crowds (risk of infection) substitute activities like going to the zoo, and getting together with just one or two friends at a time.
- Encourage everyone to wash their hands. OFTEN. One mom put a sign up on her front door, so no one would feel offended or singled out. Carry a small bottle of hand sanitizer with you.
- If your child is crawling or toddling, take off your shoes when you get home from the hospital (or designate one pair as “hospital shoes”) to avoid tracking those germs into your home.
- Drawing or stitching scars, ports, or “boo-boos” on a doll or stuffed animal can help your child cope with these things on their own body.
- Keep an overnight bag packed with essentials for you, your child, and his siblings. This is invaluable when you must make urgent or unexpected trips to the hospital. Items to include: change of clothes, sweater or light jacket, toiletries, notebook and pen, camera, hand cream, chapstick, hard candy, magazine or book, phone cards, nutritious snacks, important phone numbers, special toys.
- Figure out how many treatments your child will have, and fill a jar with that many pebbles. After each treatment, let the child throw away a pebble. It helps to see the jar get empty!
- Be assertive. If you don’t understand something, ask doctors/nurses for more explanation.
- Read children’s books about cancer with your child (if they’re old enough) Let them “play” their experiences with a doctor’s kit, face mask, etc.
- Tell your spouse you love him/her. Try to be gentle with each other.
- For siblings: Try to have the same childcare and as much of the same routines as possible.
- If you have an infant: the hospital can often provide you with a breast pump, formula, and/or diapers while you‘re admitted.
- Don’t argue with doctors or hospital staff in front of your child. Seeing adults disagree can add to their stress.
- Ask if the hospital has a Play Specialist (or a volunteer) who can stay with your child while you take a shower, get a meal, talk with the doctor, or get some fresh air.
- See if your workplace has a donation program to help families during medical emergencies. Coworkers may be able to donate leave time to you.
- Try to keep as much of the sick child and siblings’ routines intact as you can. Lessons, soccer practice, etc, can be a source of “normalcy.”
- Be kind to yourself. Try to get enough sleep, choose healthy food, take a walk and get some fresh air. Listen to upbeat music. Discover or rediscover faith. Learn to accept help whenever it’s offered.
“We came to a point where Sharon HAD to carry pre-cancer pictures of Grace to show nurses and docs. They kept saying things like ‘she probably never weighed enough”, “she probably always had a droopy eye.” My niece got some photo copies made and took a small photo book to the hospital, from then on it went in the overnight bag for each inpatient trip. Every time someone would talk like that Sharon would show the pictures, and after a while she even put a picture in Grace’s hospital room of ‘before.’”
“We made up a photo collage on a poster board and laminated it at Kinkos. We bring it to every hospital stay and hang it outside on her door. It helps the nurses/doctors see the at home side of Abby, and it also lets her hospital friends who may be here know that we are in too.”
“Treat your child today the same way you treated them yesterday. What was wrong for them to do yesterday is still wrong today and will be wrong tomorrow. Do not let your child suddenly get away with breaking the rules because they have cancer. What you will find is that a year from now when your child has become a cancer survivor you will have a very difficult child on your hands. Treat your child as if s/he is going to survive.”
Coping with Wilms Tumor: Ways for Friends and Family to Help
You want so much to help, but don’t know what to do. Here are some practical suggestions…
- Be specific about how you can help
- Babysit the other children, pick them up after school, help with homework
- Do the laundry
- Clean the house
- Do the yardwork
- Take care of the family pet(s)
- Pick up out-of-town relatives at the airport
- Make dinner
- Help with transportation.
- Run errands: to the grocery store, to pick up prescriptions.
- If your offer to help is refused, try again at another time.
- Be a “point person.” This is the person who does most of the phone calling to friends and family, disseminating information and giving updates.
- If you send the sick child a card or give a gift, remember their siblings, too. One friend put together a bag full of small, wrapped presents –so that whenever the sick child received a gift, mom had something fun for his siblings, too.
- Giftcards can be extremely helpful – for groceries, gas, takeout or fast food, cellphone minutes (or prepaid phone cards), video and videogame rentals.
- Organize people to make and deliver meals to the family on a regular basis. Use disposable containers that don’t have to be washed or returned. Meals that can be frozen, and then popped into the oven when needed are very helpful.
- Avoid saying things like
- “I know how you feel” (even if you’ve had a child with cancer yourself, everyone’s experience is different)
- “You are so strong, I know I couldn’t handle this” (what else is a parent supposed to do?)
- “It’s God’s will/God doesn’t give you more than you can handle” (let the parent initiate spiritual discussions)
- Do say things like:
- “How are you doing?” (then *listen*)
- “I’m sorry to hear that you are going through this.”
- “I don’t know what to say, but I want you to know that I care.”
- Honor the family’s privacy: don’t discuss them with others without their permission.
- Organize a fundraiser to help with expenses (but discuss with the parents first)
- If visiting at the hospital: Always wash your hands before entering the room. Don’t go at all if you’re not feeling well.
- Good stuff to bring parents staying at the hospital
- nutritious snacks
- magazines or books
- comfortable clothing, such as sweatshirts, sweaters or jackets (hospitals are often cold).
- If there’s a microwave oven available, soup or meals that don’t need refrigeration.
- An envelope of $5 bills for the hospital cafeteria or snack bar.
- note cards, nail care products, laundry detergent, hand lotion, light reading materials (think to yourself, “If I couldn’t be home for a week, what would I need?” Then throw it in the bag).
- Offer to spend time with the child so the parent(s) can get out of the hospital room for a bit.
“Be the ‘fun’ friend who shows up at the hospital room or at home with bubbles, silly string, joke books, Marx Brothers videos, rub-on tattoos, whatever. Life is scary enough right now without having all the grown-ups walk in with long faces! It’ll help Mom and Dad, too.
“One of our dearest friends showed up at the hospital with a roll of paper, painters’ tape –the kind that doesn’t leave sticky marks– and a box of markers. She covered the walls with paper and each person who visited my son drew pictures for him, wrote jokes, left funny notes and signed their names. Of course, he wanted to draw, too! Distraction is the name of the game! ”
“My friends would go to a restaurant, pick up food for all of us, and come over to our (hospital) room. Party in Ped-Onc room 9!” (Okay this with parents first)
Stay in touch for the long haul, not just the first weeks. Cards, notes, phone calls, emails, and practical help will be just as important and appreciated in the middle of treatment as they were right after diagnosis.
“I have four special friends who were just marvelous during all of this. For Christmas, I gave each of them a charm bracelet with a “footprints” charm. I explained that if I look back on this part of my life, like the ‘Footprints in the Sand’ poem, I see all their footprints.”
Coping with Wilms Tumor:
Tips to help the siblings of a child diagnosed with cancer
From: Melanie Goldish, Executive Director — SuperSibs!
- Introduce them by their OWN name (not as “Jimmy’s brother” or “sister”).
- Ask the siblings how THEY’RE doing – and then REALLY listen. (Don’t always ask them for the medical report on their brother or sister. These kids want a life outside of cancer, too!)
- Offer to free up the parents so they can spend special time with the sibs alone. Many siblings feel abandoned and devastated because they have little alone time with their mother or father.
- Send fun mail addressed to the siblings — individually, by name!
- Invite the siblings to be a part of fun activities with your family, to help THEM feel special and wanted.
- Offer to drive the siblings to and from the hospital for a visit with their family, who might not always be able to manage the commute.
- Remind the siblings that they’re not alone. Many kids in their situation feel angry, jealous, guilty, afraid or forgotten. Encourage the sibling to reach out to someone who will be a good, special support person – maybe YOU!
- Express your pride in the siblings’ own accomplishments. Tell them how special THEY are.
- Encourage the sibling to write a story or draw a picture that helps them communicate the feelings they are experiencing. Finding outlets for their emotions can be very therapeutic.
*The parents and families of the Wilms-Kids email listserv: http://www.acor.org
and the parents and families of the International WAGR Syndrome Association: http://www.wagr.org
*The New England Coalition for Cancer Survivorship, http://www.neccs.org
*Ped-Onc Resource Center, http://www.acor.org
*Wonders & Worries, http://www.wondersandworries.org
Kelly Trout, BSN, RN
Health Consultant, International WAGR Syndrome Association
Last updated: February, 2014