International WAGR Syndrome Association

The Children's Oncology Group (COG) Family Handbook
is now available in English, Spanish, and French.

The COG Family Handbook was created by the COG Nursing Committee to provide patients and families with general information about childhood cancer and its treatment.

The Family Handbook has been an invaluable resource distributed by COG physicians, nurses, and social workers to families dealing with a childhood cancer diagnosis:

http://www.curesearch.org

Ronald McDonald House Charities and CureSearch Collaborate

http://www.curesearch.com/Spanish/

http://www.curesearch.com/category.aspx?cancertype=9

• 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 the Friends and Family page below for ideas).

• 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 http://www.acor.org for the Wilms-Kids listserv).

• The Candlelighters Childhood Cancer Foundation is a support and information group with a wonderful, helpful website: http://www.candlelighters.org

• 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:  Make A Wish (www.makeawish.org) Make A Child Smile (www.makeachildsmile.com) and Love Quilts (www.lovequilts.com)

• 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.