Support for Families of Cancer Kids

When your child is diagnosed with cancer, your whole family is affected in many, many ways. This section covers the non-medical aspects of having a child with cancer. Over the years we've gathered a plethora of helps for parents and for kids that are sometimes hard to categorize. The major headings are listed below, with quick links to specific lists of resources if that's what you are really after. The last heading contains a list of miscellaneous sites of interest to parents of children with cancer.

Emotional support and psychological help for parents

If you are looking for help coping, do you turn to an organization such as a cancer society, a local support group, an online support group, friends and family, or a health professional? The links below take you to ped-onc pages that expand on each of these areas.

where to get support - ped-onc page of general information
online support groups (e-mail lists) - ped-onc page covering e-mail lists
support organizations - ped-onc page covering childhood cancer organizations
childhood cancer support organizations - often in specific geographical locations

Support for kids, teens, and young adults

Various organizations have set up web sites (or local groups) for young people that have both activities and ways to interact with others in the same situation. For siblings, go to the kids page. Most cancer kids take advantage of cancer camps, make-a-wish, and hat and wigs. If your local hospital does not give you information on these resources, this ped-onc site has lists and contact information for many of them.

kids page - ped-onc page for kids and siblings
teens/young adults page - ped-onc page for teens and young adults
make-a-wish organizations - how to get a wish and large list of Wish organizations
cancer kid camps - ped-onc list
hats and wigs - ped-onc list

Helps for educating the child with cancer

Cancer treatment disrupts your child's education because he or she experiences side effects from the treatment and unable to fully participate in public school. Treatment can also cause changes in physical and/or cognitive abilities. Some effects of treatment might not show up until years after treatment ends. The ped-onc section linked to below contains a lot of original information, parents' comments, and links to more information on this important topic.

education large ped-onc section

Financial help, work, and insurance issues

A diagnosis of childhood cancer can wreak havoc on a family's finances. While the ped-onc financial section does not have a lot of original information, it does link to a lot of web sites with useful information, and perhaps will give you some ideas that you have not thought of.

financial aid ped-onc section on financial aid and insurance issues
work issues: Family Medical Leave Act (FMLA) and childhood cancer - see the pertinent Candlelighters quarterly journal articles
lodging Ronald McDonald houses and more - ped-onc list
airline flights ped-onc list
scholarships ped-onc list - one of the most comprenhensive on the web

Books and Videos

Lists of books and videos are linked below:

printed materials ped-onc list
videos ped-onc list

Miscellaneous

This is a hodgepodge of useful, interesting, and fun links for parents and families of children with cancer.

Send Kids the World Parents can sign up their child to receive postcards from around the world. A free service, inspired by a girl undergoing treatment for ALL.
There's a Monkey in my Chair "Each child is provided with a "monkey kit" which includes a big stuffed monkey that takes their place in school when they are unable to be there. The kits include the monkey with a backpack, a book, and other items that can be utilized by the child and/or their classmates."
Never Say Never . . . Horses Healing Hearts. Never Say Never is an equine assisted program for children and teens living with cancer and other life challenges. In Webster, NY.
CB and Olaf A CB is a cancer board, a tool meant to be used in conjunction with positive imagery/guided visualization techniques. Visit the site to see the types of cancer boards that are offered for kids and teens.
Normal Moments ...helping parents of children with critical illnesses share more “normal moments” every day. Supportive services for parents with critically ill children (starting out just in the Chicagoland area for non-web or phone based services).
Do's and Don't's What to say to and do for and what NOT to say to a cancer family -- written by the "pros".
Our Favorite Inspirations Ped-onc page: A collection of poems and writings for parents of kids with cancer.
You Know You're a Parent of a Kid With Cancer When . . . (on the Squirrel Tales site)
Squirrel Tales A comprehensive (and highly recommended) web site by/for parents of children with cancer
Childhood Cancer Ombudsman Service: FAX at (804) 580-2502, or contact at gpmonaco@hughes.net.
Grand listing of childhood cancer web sites Parents' web sites for their children, a good way to contact other parents in the same situation as you are.
What to Include in Gift Baskets for Families in the Hospital Many parents of children with cancer become involved with parent-support groups. One idea for support is to help newly diagnosed families by bringing them "survival kits" while in the hospital during the stay at initial diagnosis. Several times an online parent has asked for ideas of what to put in these survival kits or "gift baskets". The link below takes you to a summary of suggestions.
Project Linus - non-profit organization that gives security blankets to chemo kids
Teddy Bears for Cancer Kids - non-profit organization that gives teddy bears to chemo kids
The Kimo Bear Project - a bear complete with catheter for chemo kids
Gold Ribbon Pins Organization that sells items and give proceeds (or percentage of profits) to childhood cancer awareness or research.
Cathy's Candles for Kids Organization that sells items and give proceeds (or percentage of profits) to childhood cancer awareness or research
Remembrance Bears has a Childhood Cancer Bear - idea for fundraisers
Beads of Hope makes jewelry to bring awareness to childhood cancer and donates money from each sale to childhood cancer research
Sammie's Tops Cover-ups or helps for ports: Sammie's Tops sells inexpensive short shirts that hold up Hickmans.
Alicia's Closet (on the Heirloom-Quilts site, click on Alicia's Closet) Garments for children undergoing chemotherapy.
Smile Quilts Smile Quilts is a site devoted to creating personal virtual quilts for some special children. Each one of these children suffers from a life-long or terminal illness. We want to help bring a little happiness into their lives and show them how important and special they are. Each quilt is personalized for each child by including their pictures, their favorite colors and interests, and their family members.
Make a Child Smile Each month, three new children are featured. A picture and biography describing the child and information about their family is published on the site. The child's illness is verified with the primary doctor before they are featured. Hundreds of 'net surfers, schools, service organizations, girls/boys scouts and church groups use the MACS site as a philanthropic project where they send cards, letters and small gifts to the featured children and their siblings through postal mail.
Love Quilts to Make a Child Smile Once a child has been "featured" on the Make A Child Smile website, they are put in the loop to receive a beautiful cross-stitched, handmade quilt from the quilting angels.
Chemo Angels This website assigns an "angel" to each child/adult with cancer. This angel corresponds directly with the child with regular mail and email. The patient will receive cards, letters and gifts.
Hugs and Hope Club - "Each month, I post the stories and pictures of two to four children who are seriously injured or ill. I ask visitors to the site to say a prayer for and mail a card or small gift to each child and a note of encouragement to the parents. This small effort on your part can mean a great deal to a family battling cancer." [excerpted from the Hugs and Hope Club site 2/01]
Angels for Hope "We crochet angels and butterflies that are sent out all over the world upon request to those who are severely injured, chronically ill, and their caregivers or just someone that needs hope free of charge. We are now offering Smiley Faces for Hope for children also."
Songs of Love "The Songs of Love Foundation is a national nonprofit organization providing fully produced personalized songs for children battling serious illness, free of charge. Nearly 5000 children in more than 350 hospitals nationwide have already used our service. Each song is delivered on CD and the song's lyrics contain the child's name and favorite things and people. We uphold all requests to keep all information strictly confidential." Note: Quite a few online families have had Songs made for their child and rave about this service.
Cancer Warriors. An Angel Network that sponsors entire families of children with all types of cancer. (Note: this link is not working 7/05.)
Post Pals. Similar to Angeling, based in the United Kingdom. (Not cancer specific.)

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

contact webmaster/ped-onc home/last updated 4/09