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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 ACCO (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:
This is a hodgepodge of useful, interesting, and fun links for parents and families of children with cancer.
- Lighthouse Family Retreat Lighthouse serves families by creating seaside retreats where they can rest and feel like a family again. "It's a fun, joyful and hopeful setting that families don't often experience when going through treatment." Families are sponsored by volunteers who serve on each retreat. It's a really cool resource that serves every member of the family - mom, dad, siblings and the child with cancer. Many parents that are members of the ACOR online support lists have used and recommend this retreat.
- The Jared Box Project Begun, in 2001 by the classmates of Jared, a young child who battled brain cancer, this non-profit delivers boxes of small gifts, toys, cards, and games to chronically ill children in hospital. Over 200,000 Jared Boxes have been made and are now in over 45 states.
- Cards of Hope sends cards with temporary tattoos, coloring pages, stickers and etc. to children with cancer.
- The Cellie Cancer Coping Kit helps children and parents deal with the challenges of cancer and its treatment
- Team IMPACT Based in New England and including NY, NJ and PA, Team IMPACT enhances the lives of children facing life-threatening diseases by matching them with college athletic teams. The child benefits from the camaraderie, support, respect, laughter and love that come from being a valued member of a team.
- Lights of Hope - Candles for Kids. Candles that represent children who have fought cancer. Portion of proceeds goes to childhood cancer organizations.
- KINfolk Providing Computers to Hospitalized and Homebound Children Since 1999
- 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 firstname.lastname@example.org.
- 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
- Gold Ribbon Pins Organization that sells items and give proceeds (or percentage of profits) to childhood cancer awareness or research.
- 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. (The link is to the email of the woman who still makes these tops.)
- 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.)
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.