A variety of materials to assist you during these trying times: books, planners, articles, apps, TV shows and more…
A variety of materials to assist you during these trying times: books, planners, articles, apps, TV shows and more…
Medical Terms
- NIH: Child/Teen Health Information
- KidsHealth: Kid-Friendly Medical Dictionary
Managing Meals & Family Needs
Printable Resources
For Caregivers
- Caregiver Worksheet
- Healthcare Toolbox: Handouts for Parents and Caregivers
- A Caregiver’s Guide: Taking Care of Yourself While Your Child is in the Hospital
- Activities to Promote Resilience in Preschoolers
- Activities to Promote Resilience in School Age Children
- Devereux Adult Resilience Survey
- Your Financial Guidebook for Pediatric Cancer (English)
- Guía Financiera para el Cáncer Pediátrico (Español)
- Frente al Diagnostico
- Higiene – Guia de Cuidados Durante el Tratamiento
- Puatas Para una Mejor Alimentación
- Pinchazos y Punciones
- Retinoblastoma
- Cuidar a un Nino Enfermo en Casa
For Children
- Healthcare Toolbox: Handouts for Children and Teens
- Hospital Hero: A Child’s Workbook
- Mis Dias de Hospital
- Hablando de Tu Enfermedad
- Dia a Dia – La Historia de Celeste
For Siblings
Digital Resources
Caregivers
- Healthcare Toolbox: For Patients and Families Information and resources to help children and families cope with stress reactions following illnesses and injuries.
- After the Injury: Helping Parents Help Their Kids Recover Information, videos, and tools to help parents understand children’s reactions to serious injury and promote recovery. Allows parents to rate their child’s reactions and create a care plan for their child.
- Devereux Center for Resilient Children Resources for caregivers to help build resilience in children as well as themselves.
- Pediatric Brain Tumor Foundation – Resources for Families Provides resources for caregivers to help your child cope with a brain tumor.
- National Association of School Psychologists – Trauma Information for parents and educators on childhood trauma.
- National Child Traumatic Stress Network Information and resources for parents and children who have experienced a trauma, including: abuse, community or school violence, natural disasters, war, terrorism, illness or injury, or the loss of a loved one.
- The National Childhood Cancer Society – Beyond the Cure Information and resources to prepare survivors and their families for life after treatment.
- Distraction in Action Tool – A free, web-based app that provides recommendations on how to use distraction during medical procedures based on your individual child.
- Fundacian Natali Dafne Flexer – Spanish-language resources with information on the entire family’s experience with childhood cancer, a free library of downloadable books and an app.
- Hope Portal – A database of pediatric cancer-focused organizations that can be filtered by location, type and diagnosis.
- Courageous Parents Network – Offers information on self-care, sibling needs, bereavement and end of life care through articles, guided pathways and video.
Caregivers and Kid-Friendly
- Phoenix Society for Burn Survivors Provides information, support, and resources to children, adolescents and caregivers who have been impacted by a burn injury, as well as the community around them.
- PBS Kid’s Arthur Family Health – Resilience Resources, activities and videos to help caregivers and children cope with traumatic events and build resilience.
- KidsHealth Information about child health, behavior, and development for kids / niños, teens / adolescentes and parents/ padres.
- The Experience Journals Collections of stories, videos, and personal experiences from families about what it has been like to live with their children’s illnesses.
- Band-Aids and Blackboards Information by and for children and teens living with long-term or chronic medical illnesses, and the adults in their lives.
- Canteen Free and tailored support for people ages 12-25 impacted by their or a family member’s cancer. Services include online communities, information guides and online counseling for patients, siblings and caregivers.
Kid-Friendly
- About Kid’s Health – Just for Kids Age-appropriate information and animations for kids on many different health topics.
- Worry Wise Kids Information to help children with excessive worries or fears.
- National Sleep Foundation (Kids) Child-friendly website about sleep.
- InvisiYouth A community for teens and young adults around the world with various chronic illnesses and disabilities.
- A Moment of Magic Unlimited High-quality, fun, and engaging digital programming on demand including story times with superheroes, arts and crafts with a princess, and unique collaborations with celebrities, athletes, and magic makers across the country. Zoom calls with characters and in-person visits are also available by request.
Siblings
- JustSibs An interactive, digital experience to help teens and pre-teens navigate the many challenges that come with having a sibling with an illness or injury. Through visual storytelling and supportive activities, kids are given a safe space to explore, and learn to manage, a wide variety of feelings that they may face.
- Alex’s Lemonade Stand Foundation – SuperSibs! Resources for parents and extended family to help support siblings when a brother or sister has cancer. Caregivers can sign their child up for the SuperSibs! program where they will receive age-appropriate mailings a few times throughout the year.
- Siblings Australia Provides support to young, teen and adult siblings of children facing chronic conditions including disability, chronic illness and mental health issue.
- Sibs.org UK-based website with resources of young and adult siblings of people with disabilities. Provides information, tips and access to sibling advisors for questions, as well as online and in-person support groups for UK-based adults.
- Center for Siblings of People with Disabilities Offers downloadable multimedia resources applicable to all conditions and in person artistic programming.
Podcasts
- InvisiYouth Chat Sessions Episode 76: InvisiYouth Chat Sessions with Director of Family Support, Ryan’s Case for Smiles, Katie Holcomb – Director of Family Support and PTSD Services for the nonprofit, Ryan’s Case for Smiles, Katie Holcomb, knows the importance of caregivers and siblings in the lives of young people living with chronic illness/disability and how to best serve this bond professionally and personally. The nonprofit is inspired by her late brother, Ryan, who passed away at 17 from osteosarcoma, and Katie’s passion to have initiatives and sibling programs to help families cope when loved ones struggle with health issues is deeply impactful. Available on Apple, YouTube, Spotify and most major platforms.
- Child Life on Call Episode 151: Gavin + Cindy’s Story: A Son with Osteosarcoma – Cindy and Gavin share about their son Ryan and his battle with Osteosarcoma. Cindy shares about how she created a Case for Smiles to help her cope with Ryan’s diagnosis. Gavin brings the perspective of dad and professional and shares how he started a new position at the hospital his son was being treated at the very same day as a diagnosis. They openly share the ups and downs of their journey and how Ryan’s legacy lives on today.
- Help and Hope Happen Here Season 2, Episode 164 – Katie Holcomb talks about her brother Ryan’s battle with Osteosarcoma, her own experience as a sibling, and Ryan’s Case For Smiles’ PTSD initiative and sibling program.
- Clayton’s Voice Episode 2: Through a Sibling’s Eyes – As a teen, CFS’ Katie Holcomb watched her younger brother battle cancer for six years before sadly passing away at 17. This gives her a unique insight into the sibling experience.
Apps
Free Apps: Name • Age • Device
- Worry Box by Excel At Life
6-16 • Android - Nature Melody by Lina Elsayed
6+ • Apple - Breathe2Relax
6+ • Android/Apple - Songza
13+ • Android/Apple - Breathe, Think, Do with Sesame Street
4+ • Apple/Android - Stop, Breathe & Think
10+ • Apple/Android - Settle Your Glitter
4+ • Apple/Android - Super Stretch Yoga HD
4+ • Apple iPad
- Headspace: Guided Meditation and Mindfulness
4+ • Apple - Breathing Bubbles
5+ • Android/Apple - Wellbeyond Meditations for Kids
7+ • Apple - Touch and Learn Emotions
4+ • Apple - Bubble Snap
3+ • Apple - Recolor
4+ • Apple - Take a Chill
12+ • Apple - Avokiddo Emotions
4+ • Apple
- Positive Penguins
9-11 • Apple: $.99 /Android: $1.99 - Bedtime Meditations for Kids
Up to 12 • Apple: $ 4.99 - Mindfulness for Children
5+ • Apple: $4.99 - Kids Yogaverse
4-8 • Apple: $3.99
- Scape
8+ • iPad: $5.99 - Drift Away
9+ • Apple: $.99 - Zen Bound Universe
9+ • Apple: $2.99 - Daniel Tiger’s Grr-ific Feelings
3+ • Android/Apple: $2.99
Books for Caregivers
- Afraid of the Doctor: Every Parent’s Guide Preventing and Managing Medical Trauma by Meghan L. Marsac and Melissa J. Hogan
- Children and Trauma: A Guide For Parents and Professionals by Cynthia Monahon
- Freeing Your Child from Anxiety: Powerful, Practical Solutions to Overcome Your Child’s Fears, Worries and Phobias by Tamar Chansky
- A Parent’s Guide to Building Resilience in Children and Teens: Giving Your Child Roots and Wings by Kenneth R. Ginsburg and Martha M. Jablow
- Building Your Bounce: Simple Strategies for a Resilient You by Mary Mackrain and Nefertiti Bruce Poyner
Books for Children and Teens
Feelings
- What to Do What You’re Scared and Worried: A Guide for Kids by James J. Crist
- What to Do When You’re Sad & Lonely: A Guide for Kids by James J. Crist
- When I Feel Scared by Cornelia Maude Spelman
- Ruby Finds a Worry by Tom Percival
- The Rabbit Listened by Cori Doerrfeld
- In My Heart by Jo Witek
- When Something Terrible Happens: Children Can Learn to Cope with Grief by Marge Heegaard
- The Way I Feel by Janan Cain; Parenting press; 2019.
Separation Anxiety (Young – School Age Children)
- My Day, Your Day by Robin Ballard
- A Suitcase Surprise for Mommy by Cat Cora
- Llama Llama Misses Mama by Anna Dewdney
- Don’t Forget to Come Back! by Robie Harris
- The Kiss Box by Bonnie Verburg
- The Invisible String by Patrice Karst
- The Kissing Hand by Audrey Penn
Going to the Hospital
- Clifford Visits the Hospital by Norman Bridwell
- What’s In a Doctor’s Bag by Nell Shulman and Sibley Fleming
- Going to the Hospital by Anne Civardi
- Curious George Goes to the Hospital by H. Rey
- Corduroy Goes to the Doctor by L. McCue
- Maisy Goes to the Hospital by Lucy Cousins
- My Trip to the Hospital by Mercer Mayer; Harper Collins; 2005.
- Franklin Goes to the Hospital by Paulette Bourgeois
- A Visit to the Sesame Street Hospital by Deborah Hautzig
- This is a Hospital, Not a Zoo! by Roberta Karim
- Paddington Bear Goes to the Hospital by Michael Bond, Karen Jankel and R. W. Alley
- Do I Have to Go to the Hospital? A First Look at Going to the Hospital by Pat Thomas; Barron’s Educational Series; August, 2006.
For Siblings
- Jamie’s Journey: Cancer from the Voice of a Sibling by Sharon Wozney; Little Five Star; 2016.
- The Sibling Slam Book: What It’s Really Like to Have a Brother or Sister With Special Needs by Don Meyer
-
Daniel and His Starry Night Blanket by Sally Loughridge
- The Perfect Shelter by Clare Helen Welsh
- When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children by Debbie Duncan
TV Shows for Young Children
- Daniel Tiger’s Neighborhood Episode 102: Daniel Visits School/Daniel Visits the Doctor; Episode 103: Daniel’s Babysitter/Daniel Goes to School; Episode 104: Daniel Gets Mad/Katerina Gets Mad
- Sesame Street Sesame Street Visits the Hospital; Elmo and Chris Sing about Feelings; Name that Emotion with Murray!
- Curious George Season 1, Episode 12: Doctor Monkey; Season 3, Episode 12: Relax!
- Doc McStuffins All Episodes
- Arthur After the Storm; April 9th
Resources for Educators
- National Association of School Psychologists – Supporting Students Experiencing Childhood Trauma Tips for parents and educators to support children impacted by trauma.
- National Association of Secondary School Principals – Responding to Students’ Chronic Illnesses Information on supporting students experiencing chronic illnesses.
- School Sibling Support Form A form to be used as a reference and discussion guide for siblings of children with illnesses and injuries, their parents and school staff.
- Supporting Students Whose Sibling has a Life-Changing Illness or Injury Webinar Free webinar on supporting children with siblings with cancer and other illnesses and injuries at school. This webinar is worth 1 CE hour.
- La Escolaridad del Nino con Enfermedad Oncológica – Se trata de una guía para acompañar a la comunidad educativa cuando uno de sus alumnos es diagnosticado con una enfermedad oncológica. Brinda información que ayudará a facilitar la continuidad y la reinserción escolar del niño enfermo de cáncer, teniendo en cuenta que el rol de los docentes es clave para que esto sea posible.
Grief and Bereavement
Grief and Bereavement Resources for Children at End of Life
Books
- Gentle Willow: Story for Children about Dying by Joyce C. Mills
- On the Wings of a Butterfly: A Story about Life and Death by Marilyn J. Maple
- The Purple Balloon by Chris Raschka
- Beyond the Rainbow: A Workbook for Children in the Advanced Stages of a Very Serious Illness
- The Gift of Gerbert’s Feathers by Meaghann Weaver, MD MPH and Lori Wiener, PhD DCSW
- When Something Terrible Happens: Children Can Learn to Cope with Grief by Marge Heegard
- The Fall of Freddie the Leaf: A Story of Life for All Ages by Leo Buscaglia
- The Invisible String by Patrice Karst and Geoff Stevenson
- Invisible String Workbook by Patrice Karst & Dana Wyss
Websites
Toolkits
- My Wishes (children) or Voicing My Choices (Teens and Young Adults)
- For Caregivers of a Child with Serious Illness – Conversation Starter Guide
Grief and Bereavement Resources for Grieving Siblings
Books
- Brother: A Grief Story by Teleah Scott-Moore
- Life Is Like the Wind by Shona Innes, Irisz Agocs
- Something Very Sad Happened: A Toddler’s Guide to Understanding Death by Bonnie Zucker
- When Something Terrible Happens: Children Can Learn to Cope with Grief by Marge Heegard
- Gone But Never Forgotten: A Children’s Book about Grief and Loss
- Scarlet Says Good-Bye: An Activity Book for Kids When a Loved One Enters Hospice Care
- Forever Connected by Jessica Correnti
- You’ll Always Be by Callie Fryt
- The Invisible String by Patrice Karst and Geoff Stevenson
- Invisible String Workbook by Patrice Karst & Dana Wyss
- The Grief Bubble by Kerry Debay
- The Memory Box: A Book About Grief by Joanna Rowland
- Always and Forever by Alan Durant
- Helping Teens Cope with Death by The Dougy Centre
- Fire in My Heart, Ice in My Veins: A Guided Grief Journal for Teenagers and Young Adults by Enid Samuel Traisman
Websites
- JustSibs.org
- The Dougy Center’s Resources for Kids
- Sesame Street– Grief
- MISS Foundation – For Children Who are Grieving
- Child Mind Institute – Helping Children Grieve
- National Alliance for Children’s Grief
- Child Bereavement UK
Toolkits
- NACG Toolkit: Responding to Change & Loss in Support of Children, Teens, & Families
- NACG: Talking to Children & Teens about End of Life Memorials/Rituals
- NACG: Individual Bereavement Support Plan – Returning to School
- NACG: Supporting Children of All Abilities Who are Grieving
- New York Life Foundation: After a Loved One Dies – How Children Grieve and How Parents/Adults Can Support Them
Videos
- Roger Neilson House Sibling Bereavement Video Series
- Child Bereavement UK Video on Remembering a Lost Loved One
Camps
Grief and Bereavement Resources for Caregivers
Books
- On Children and Death: How Children and Their Parents Can and Do Cope With Death by Elisabeth Kubler-Ross
- The Worst Loss: How Families Heal from the Death of a Child by Barbara D. Rosof
- A Broken Heart Still Beats: After Your Child Dies by Anne McCracken and Mary Semel
- Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief by Dr. Joanne Cacciatore
- Heaven’s Child: A true story of family, friends, and strangers by Caroline Flohr
- Permission to Mourn, A New Way to Do Grief by Tom Zuba
- Healing a Parent’s Grieving Heart: 100 Practical Ideas After Your Child Dies by Alan D Wolfelt
- When a Grandchild Dies: What to Do, What to Say, How to Cope by Nadine Galinsky Feldman
Websites
- Courageous Parents Network – End of Life and Bereavement
- Dougy Center
- Grieve Well
- Child Bereavement UK
- Bereaved Parents USA
- Grieving the Loss of a Child – How to Cope
- MISS Foundation
- Children’s Bereavement Center
- Childhood Cancer and Leukemia Group End of Life and Bereavement Resources Child Bereavement UK