TRANSFORMING THE CHILDHOOD CANCER SURVIVOR EXPERIENCE Additional Material
Dec 26, 2015
The FactsCancer is the number one disease killer of
America's children. Cancer kills more children each year than Cystic
Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
One in 330 children will develop cancer by age 20 Although the 5 year survival rate is steadily increasing,
one quarter of children will die within 5 years from the time of diagnosis.
More than 1,750 children will be diagnosed in California this year. (~500 in the Bay Area) Average treatment plan is 2 years.
Surviving Brings Another Set of Problems Two-thirds of children who do survive face life-long
late-effects from the treatment of their disease. Of those, one quarter are classified as severe or life threatening.
Research on the emotional impact of childhood cancer finds that parents and siblings report even greater long term emotional impacts than the diagnosed child.
Childhood Cancer Diagnoses, by Type of Cancer: 2003-2005 (Source: kidsdata.org)
California 0-14 years 15-19 years
Leukemia 1,269 240
Lymphoma and Reticuloendothelial Neoplasms
313 344
Central Nervous System and Miscellaneous Intracranial and Intraspinal Neoplasms
663 151
Sympathetic Nervous System Tumors
219 LNE
Retinoblastoma 115 LNE
Renal Tumors 162 6
Hepatic Tumors 66 11
Malignant Bone Tumors 168 115
Soft Tissue Sarcomas 271 124
Germ Cell/Trophoblastic and Other Gonadal Neoplasms
155 242
Carcinomas and Other Malignant Epithelial Neoplasms
137 341
Other and Unspecified Malignant Neoplasms
LNE 13
Total for all groups combined
3,581 1,600
International Classification of Childhood Cancer*
*Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, Third Edition. Cancer 2005;103:1457-67
International Classification of Childhood Cancer*
*Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, Third Edition. Cancer 2005;103:1457-67
International Classification of Childhood Cancer*
*Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, Third Edition. Cancer 2005;103:1457-67
Advocacy thru Alliance
Awareness Priority Transform
• Content Creation (Stories)• National Childhood Cancer
Awareness Month & Day (9/13/08)
• Endowment Campaign• Kid Specific Items• Community Integration &
Funding (Schools, Spiritual Centers, Sports Teams)
• National Action Plan• National Registry• Survivorship (treatment
complications and Late effects) addressed
• Research Investments• National Summit on Family
Centered Best Practice Business and Caregiver Models
• Electronic Health Records• Parent Advocate Tools
and Training• Parent Mentor Training• Online Community
Network• Cancer Support
Information Extended
Alliance Partner Programs
Enable
Financial support and capacity-building to community-centered initiatives that address the physical, emotional and practical challenges of cancer survivorship
Develop & Grow
Alliance Intranet and Conferences to:
• Discuss Best Practices & Challenges
• Exchange program & development details
• Provide Training
• Build Community