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KnOWLedge

For Cancer Families

When a child is diagnosed with cancer, parents seek immediate guidance and reassurance that all will be ok. Here we offer resources for essential psychosocial and financial support.


CHILDREN’S MEDICAID WAIVER PROGRAMS

This list contains all of the Medicaid waivers and other programs, regardless of type, available for children in the United States, ordered alphabetically by state. The list is sortable by state, program type, ages served, level of care, population served, and income waiver.

The average cost of a stay in a hospital for a child with cancer is a staggering $40,000 per stay.


ONLINE SUPPORT RESOURCES

SurvivorVision

Our mission empowers survivors of childhood cancer by raising awareness as advocates on policy issues and through the funding of follow-up studies, support services, development and distribution of educational resources, and continued research on the long-term effects of cancer treatment.

Momcology

Momcology is a national 501 (c) (3) nonprofit organization committed to extending the benefits of community by providing reciprocal peer support models for families affected by childhood cancer.

CoHeals: A Free App for Connecting Pediatric Cancer Parents

We forge  connections and build relationships among families affected by pediatric cancer using smart technology, national partnerships, and focused research.

Children’s Oncology Group – Passport for Care

With either a code from your clinic or your own records, you can compile a personalized list of late term effects and a record of your child’s treatment to share with pediatricians, school nurses, or other medical providers. 

Childhood Cancer Podcasts

This list provides podcasts for during and after treatment for pediatric cancer.


TED TALKS


The MOST COMMON forms of childhood cancer are found in the blood or central nervous system, but even the rarest forms make up 30% of all cases. 

#StBaldricks

IN PERSON SUPPORT ACTIVITIES/GROUPS

Lucy’s Love Bus, Sajni Center

A nonprofit organization that helps children with cancer or other life-threatening illnesses by providing free integrative therapies such as massage, meditation, acupuncture, music therapy, and therapeutic horseback riding. Integrative therapies ease children’s pain and anxiety during and after traditional medical treatments. See all of the Lovebus programs HERE.

OnBelay, Newmarket, NH

Youth ages 8-18 who have a family member that has been diagnosed with cancer can attend the program. The family member can be on any stage of the process with cancer (In treatment, have passed, or in remission). Once a part of the On Belay community, participants can return to as many programs as they wish.

Friends of Jaclyn Foundation

The Friends of Jaclyn Foundation’s mission is to improve the quality of life for children battling pediatric brain tumors and other childhood cancers and to raise awareness through their Adopt-A-Child, Safe on the Sidelines, and Guardian Angel Programs. We do this by pairing the afflicted child and their siblings with local high school and college sports teams, campus clubs, and arts programs in their community. 


“Western medicine isn’t the only way to treat cancer, FOOD IS MEDICINE TOO.”

#MAXLOVEPROJECT

RETREAT/CAMP OPTIONS

Research shows that summer camps for children with cancer reduce disease-related anxiety, improve self-image, increase independence, build social skills, and ultimately improve psychosocial outcomes. We provide these benefits to New England kids free-of-cost, giving patients, survivors, and siblings the chance to make lasting memories and build lifelong friendships.

First Descents

Offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis.

Camp Sunshine, Sebago Lake, ME

Offers week long camp experiences for families. Weeks are diagnosis specific. 

Camp Rising Sun, Branford, CT

Week long camp experience or cancer survivors and their siblings

The Hole in the Wall Gang Camp, Ashford, CT

Sessions for children between the ages of 7-15. Survivor and Sibling camps available

Camp Casco, Yarmouth, MA

At Camp Casco, we create a space for kids to reclaim their childhood- to laugh and play. All of our campers have been affected by childhood cancer, and this unifying environment is liberating. At camp, cancer instantly becomes the least remarkable thing about you – a welcome relief for those who have felt defined by this label in everyday life.

Only 4% of cancer funds go to CHILDHOOD cancer research. We must all advocate for #morethan4

SCHOOL SUPPORT

General Overview of long term effects on education (COG)

School Support During Childhood Cancer, St. Jude

Leukemia/Lymphoma Society Effects of Childhood Cancer on Learning

SCHOLARSHIP OPPORTUNITIES

Beyond the Cure

Awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation.

Childhood Cancer Survivors – A Practical Guide to Your Future, 3rd ed.
By Nancy Keene, Wendy Hobbie, Kathy Ruccione 

#ALEXSLEMONADESTAND