AdvocacyBooksCamps and ExperiencesEmotional SupportFamily SupportFinancial SupportInsurance ProgramsLocal AccommodationsResearch FundingTransportation
Family Resources
“The day you receive that phone call, your life changes forever.”
A pediatric cancer diagnosis is life changing. In the course of one day, families go from enjoying the best that life has to offer to a series of heart-wrenching decisions: “What are the best treatment options? Where should I be treated? Should I quit my job? What information should I share with my son’s or daughter’s siblings? How do I pay for all of this?”
There is simply no way around it, cancer is expensive. For families facing pediatric cancer treatments, the crushing financial burden is almost impossible to escape. In many cases, parents are forced to leave their jobs to become full-time caregivers. In Nebraska, this problem is compounded as many families face extensive travel to and from treatment centers along with frequent overnight stays. Meanwhile, the bills just keep rolling in…
If you live in Nebraska, several of our member organizations are focused on helping relieve the financial hardships faced by families such as:
- Electric, gas, sewer, and water bills
- Rent and mortgage payments
- Phone and internet bills
- Auto payments, insurance, gas cards, plates and repairs
- Medical bills
- Prescriptions
- Daycare
- Lodging
- And sadly, sometimes funeral expenses
A simple phone call or email is all it takes to get started. Importantly, these organizations get it. Reach out today and let a friendly voice who has walked in your shoes see where they can help.
Advocacy
Organization Name: The David Spence Cancer Foundation
Mission Statement: To ease suffering, provide hope, and save lives.
Website URL: www.dscancerfoundation.org
Email: davidspence@gmail.com
Geographical area of those you serve: Nebraska and metropolitan Omaha
Director name: David Spence
Social Media pages (Facebook, Twitter, Instagram, Youtube handles): Facebook: The David Spence Cancer Foundation
Name: The “Shootout for Cancer” Charity Golf Tournament
Mission: To provide academic scholarships in memory of individuals who have passed away from cancer, support local families battling cancer, and to help childhood cancer organizations in Nebraska.
Facebook: Shootout For Cancer
Phone: 402-995-9736
Geographical Areas: Nebraska
Director: Kelly Krings
Children’s Books for Children with Cancer
Books for Patients:
Kathy’s Hats: A Story of Hope by Trudy Krisher (ages 5 – 10)
Kathy has always enjoyed wearing hats. But when she turns nine, she learns that she has cancer. Kathy is scared, and she is especially angry when her chemotherapy treatments make her hair fall out. Suddenly hats aren’t so much fun anymore.
Let My Colors Out by Courtney Filigenzi (Preschool)
This comforting book walks young children of cancer patients through the range of emotions they’re likely to encounter and provides a message of hope. A young boy uses color to express a range of emotions as his mother undergoes cancer treatment. Some days he’s sad, some days he’s happy, and other days he’s scared or angry. The boy comes to realize that these ups and downs are perfectly normal for his situation, and he does not have to feel guilty about his feelings
I’m a Kid Living with Cancer by Jenevieve Fisher (Ages 4+)
Illustrations fill the pages with warmth and joy, showing a young boy facing cancer with logic and determination. He explains how an out of control cell forms a tumor, how a blood test is done, what X-rays, CT Scans, and MRI’s are for, how chemotherapy is administered through a Hickman Line, and how radiation works to destroy cancer cells.
The Famous Hat by Kate Gaynor (Ages 3+)
This book has been designed to help children with cancer prepare for treatment. This book shows children that this experience is only temporary; it is not a permanent part of their lives. It assures them that there will be a time where their hair will start to grow back and they will eventually leave the hospital and return home. The book also gives parents an opportunity to discuss the visit to hospital and the treatment with their child by comparing their experience to Harry.
My Cancer Days by Courtney Filigenzi (Preschool)
In the story, a young girl uses color to express her full range of emotions as she undergoes cancer treatment. Some days she’s sad, some days she’s happy, and other days she’s scared or angry. The girl comes to realize that these ups and downs are perfectly normal for her situation. The book assures children with cancer that they are not alone, and helps them understand that it’s okay to let out their feelings.
Hi, My Name is Jack by Christina Beall-Sullivan
This book addresses and focuses upon some of the feelings that may be experienced by healthy siblings. This book is unique in that it is not illness specific and does not focus on the illness itself. It is appropriate for a variety of illnesses and medical situations. Hi, My Name is Jack is a wonderful resource and tool to facilitate communication in families with a chronically ill, disabled or dying child. It is appropriate for children between the ages of 3 and 12.
I Can Survive by Jennifer May Allen (Preschool)
Written in a children’s storybook format that is appropriate for any age, the bright illustrations and punchy prose takes an optimistic view that gently yet positively encourages those who are struggling with illness and the people who love them most to appreciate the small, but meaningful things in life.
The Long and Short of It by Barbara Myers & Lydia Criss Mays (Ages 5-9)
With colorful illustrations and a comforting message, this picture book follows the parallel stories of two young girls who are having problems with their hair. One wants to grow her hair longer, while the other, who has lost her hair during cancer treatment, would just like to have it back. Their friendship leads them to a new understanding of hair loss and the act of giving, and teaches them about courage, generosity, and pride. A helpful reading and discussion guide for parents and a list of fun, related learning activities for kids are also included.
Imagine a Rainbow: A Child’s Guide for Soothing Pain by Brenda Miles (Ages 2+)
Through a series of beautiful illustrations that engage all of the senses, each accompanied by a verse couplet, this book asks the child to imagine several things to cope with pain. Some are calming, some are delighting, some are empowering, and some are inspirational. As a group they are intended to introduce the child to the skill of using imagery to refocus the mind away from pain. A Note to Parents discusses pain management and guides parents in teaching imagery and deep breathing to their children.
The Great Katie Kate Tackles Questions about Cancer by M. Maitland DeLand (Ages 4-8)
The great Katie Kate takes on the Worry Wombat as she teaches a young girl about treating cancer. When Dr. Demarco explains to Suzy that she might have cancer, the young girl begins to worry. Just then, the Great Katie Kate zooms in to ease Suzy’s mind and help her stare down the Worry Wombat. She takes Suzy on a magical tour through the hospital and explains what cancer is all about and, more important, how it is treated.
The Stars Twinkle Brightly: A Children’s Story About Cancer by Mary Fam (Ages 6-10)
“The Stars Twinkle Brightly” is the story of an eight-year-old boy who discovers he has cancer. The story transforms an otherwise unpleasing topic into a usefully informative, and highly uplifting one. The end of the boy’s plight with cancer leaves the reader feeling joyful and comforted and serves as a testimony for the power of perseverance and the love of one family. (Note: the child in this book has a short chemo regimen)
Coloring Books for Patients:
Jacob Has Cancer
His Friends Want to Help by Heather Cooper
For Siblings:
What About Me? When Brothers and Sisters Get Sick by Allan Peterkin (Ages 4-8)
Laura experiences conflicting emotions when her brother becomes seriously ill. The question, usually unspoken, lies at the heart of this story as a young girl attempts to cope with her brother’s illness. The story deals with the many complicated feelings the well child experiences in such situations: guilt about having somehow caused the illness, fear that the sibling will die, anger over being left out, anxiety about catching the sickness, and longing for life to return to the way it was.
Butterfly Kisses and Wishes on Wings by Ellen McVicker
A beautifully illustrated resource that can be used to educate and support any child who is facing the cancer of a loved one. The story, as told through the eyes of a child, lends itself to a simple and clear understanding of cancer. It also teaches children to realize the power they have to be an active and integral part of a loved one’s cancer journey
Workbook/Coloring Book for Siblings:
Because Someone I Love Has Cancer by American Cancer Society (Ages 6-12)
This inspired publication is designed to address the basic goals of therapeutic support for children who have a loved one with cancer. Featuring five self-sharpening crayons to inspire creativity, this activity book also includes a 16-page removable guide for caregivers with family and group activities, as well as activities that offer ways to discover inner strengths and enhance self-esteem.
Camps & Experiences
Name: Camp CoHoLo
Mission: Camp CoHoLo’s mission is to serve children between the ages of 6 and 17 who are impacted by cancer or blood disorders. Campers include children undergoing therapy and those who have completed treatment.
Website: www.campcoholo.com
Phone: none
Email: director@campcoholo.com
Geographical Areas: Nebraska and surrounding areas and those being treated at Children’s Hospital and Medical Center and Nebraska Medicine.
Director: Berta Ackerson
Name: Camp Quality USA – Heartland
Mission: Camp Quality serves children with cancer and their families by providing year-round programs, experiences, and companionship, at no cost. Camp Quality promotes hope and inspiration while helping children foster life skills and develop their full potential.
Website: www.campqualityusa.org
Phone: 402-450-1674
Email: heartland@campqualityusa.org
Geographical Areas: Midwest but focused on Nebraska and Iowa
Director: Laura Peitzmeier
Facebook: https://www.facebook.com/CampQualityHeartland/
Twitter: CampQualityHTL
Instagram: campqualityheartland
Name: Make-A-Wish Nebraska
Mission: Together, we create life-changing wishes for children with critical illnesses
Website: nebraska.wish.org/
Phone: Omaha Office – 402-333-8999, Lincoln Office – 402-475-9474, Kearney Office – 308-234-6612
Email: info@nebraska.wish.org
Geographical Areas: State of Nebraska
Director: Brigette Young, President/CEO
Additional contacts: Jennifer Shuman, Program Director, jshuman@nebraska.wish.org | Linda Hogrefe, VP of Development, lhogrefe@nebraska.wish.org
Facebook: https://www.facebook.com/MakeAWishNebraska/
Twitter: MakeAWishNE
Instagram: makeawishnebraska
YouTube
Emotional Support
Name: Grief’s Journey
Mission: Our mission is to provide excellent and compassionate FREE grief support services as well as grief support education and professional training.
Website: www.griefsjourney.org
Phone: 402-502-2773
Email: info@griefsjourney.org
Geographical Areas: The greater Omaha/Council Bluffs region including rural eastern Nebraska and Western Iowa
Director: CEO: Rebecca Turner
Additional Contacts: Program Director: Valerie Height, Outreach and Inclusion Coordinator (bilingual): Gabby Martinez
Name: The Compassionate Friends
Mission: The Compassionate Friends is a self-help organization offering support and understanding to families who have experienced the death of a child. You need not walk alone through your grief journey. We are not here to treat, fix or lead, but to listen, share and companion through the grief journey.
Website: www.tcfomaha.org
Phone: 402-571-4011
Email: mail@tcfomaha.org
Geographical Areas: The greater Omaha/Council Bluffs region as well as Fremont and Lincoln
Director: Kelly Pelster
Family Support
Name: Bags of Fun Omaha
Mission: Deliver a Bag of Fun to every sick child with long term and life limiting illness.
Website: bagsoffun.org
Phone: 402-651-3587
Email: Amyk@bagsoffun.org, leighs@bagsoffun.org
Geographical Areas: Nebraska and surrounding areas and those being treated at Children’s Hospital and Medical Center and Nebraska Medicine.
Director: Amy Krause
Facebook: www.facebook.com/bagsoffunomaha
Instagram: www.instagram.com/bagsoffunomaha/
Additional Contacts: Leigh Sittenauer
Name: Children’s Hospital & Medical Center Foundation
Mission: To improve the life of every child- through dedication to exceptional clinical care, research, education and advocacy
Website: www.childrensomaha.org
Phone: 402-955-6863
Email: begreiner@childrensomaha.org
Geographical Areas: Children’s Hospital & Medical Center which serves a 5 state (NE, IA, KS, MO, SD)
Director: Beth Greiner
Facebook: https://www.facebook.com/ChildrensOmaha
Instagram: https://www.instagram.com/childrensomaha
Twitter: https://www.twitter.com/@ChildrensOmaha
YouTube: http://www.youtube.com/ChildrensOmaha
Additional Contacts: Nicky McCarville; nmccarville@childrensomaha.org; 402-955-6868
Name: The Leukemia & Lymphoma Society
Mission: To cure leukemia, lymphoma, Hodgkin’s disease, and myeloma, and improve the quality of life for patients and their families.
Website: www.lls.org/nebraska
Phone: 402.344.2422
Email: Jenna.Sager@lls.org
Geographical Areas: State of Nebraska, Council Bluffs and surrounding counties.
Director: Jenna Sager
Facebook: www.facebook.com/LLSNebraska
Name: Esther’s Miracle, Inc.
Mission: To network, spread awareness, raise funds, and support those impacted by childhood cancers, diseases, and other illnesses and to prevent other children from being diagnosed with such conditions
Website: www.esthersmiracle.org
Emails:
mommyjulie@esthersmiracle.org (President), daddyjim@esthersmiracle.org (Treasurer),
caroline@esthersmiracle.org (Secretary)
Geographical Areas:USA
Director: Julie Desrosiers, M. Ed.
Facebook: www.facebook.com/esthersmiracle
Facebook: www.youtube.com/@esthersmiracle
LinkedIn: www.linkedin.com/company/esthersmiracle/
Financial Support
Name: Angels Among Us
Mission: Providing financial and emotional support to families whose children are battling cancer.
Website: www.myangelsamongus.org
Phone: (402)934-0999
Email: info@myangelsamongus.org
Geographical Areas: Families living in or being treated in Nebraska for cancer.
Director: Susan Nelson
Name: Go Sammy Strong
Mission: SammyStrong is a family-centric community that provides support to families with a child battling brain cancer. We exist to offer hope during life’s most challenging moments. Our goal is to help families when they must prioritize their child’s care instead of the financial burdens of a childhood cancer diagnosis. Our efforts will raise funds to make resources available for families and to support the various organizations dedicated to providing care for and the rehabilitation of these strong children.
Website: gosammystrong.com/
Phone: 402-612-1713
Email: gosammystrong@gmail.com
Geographical Areas: Any child receiving treatment for pediatric brain cancer.
Founder: Sarah Wemhoff-Strawn, Founder
Name: Metro Area Youth Foundation, Inc
Mission: To financially assist families whose children have been diagnosed with cancer
Website: summerbashforccc.org
Phone: (402)510.4083
Email: summerbashomaha@outlook.com
Geographical Areas: Any child receiving treatment at Nebraska Medicine or Childrens Hospital and Medical Center
Director: Gary Krebs
Facebook: @SummerBashForChildhoodCancer
Additional contacts: Sue Kinney-Wieland 402.676.5344
Name: Pediatric Cancer Action Network
Mission: Reduce the financial burden placed on families diagnosed with pediatric cancer and advocate for a cure through awareness, education and action
Website: pcanaction.org
Phone: 402-730-7331
Email: karri.pcan@gmail.com
Geographical Areas: Nebraska
Director: Karri Ahlschwede
Insurance Programs
There are a number of state and federally supported insurance programs available to Nebraskans which can be very helpful to families undergoing treatment. It is usually recommended that families explore their eligibility for these programs with the assistance of their treatment center (Children’s Hospital or Nebraska Medicine).
- State Children’s Health Insurance Program (SCHIP): A federal-state program which offers low-cost or free health insurance coverage to uninsured children of low-income, working parents.
- State Health Insurance Premium Payment (HIPP): A federal-state program designed to help working parents cover the cost of paying health insurance premiums.
- Nebraska Medicaid Program: Offers health insurance for families in financial need. Services can include part-time nursing, home care aids, medical supplies and equipment.
We encourage you to reach out to the individuals below at Children’s Hospital and at Nebraska Medicine to beging the process of determining eligiblity for these programs.
We encourage you to reach out to the individuals below at Children’s Hospital and at Nebraska Medicine to beging the process of determining eligiblity for these programs.
Name: Children’s Hospital Child Life (Omaha, NE)
Mission: Support patients and their families in navigating stressful healthcare experiences. Child life specialists advocate for the psychosocial needs of patients and their families and help communicate those needs with the medical staff. Child Life can also connect families to appropriate hospital resources to help determine eligibility for various financial aid programs (SCHIP, HIPP, Medicaid).
Phone:402-559-6775
Website: www.childrensomaha.org/hospital-experience/support-services/child-life/
Contact: Nikki Walker, Child Life Specialist
Name: Nebraska Medicine Child Life (Omaha, NE)
Mission: Support patients and their families in navigating stressful healthcare experiences. Child life specialists advocate for the psychosocial needs of patients and their families and help communicate those needs with the medical staff. Child Life can also connect families to appropriate hospital resources to help determine eligibility for various financial aid programs (SCHIP, HIPP, Medicaid).
Phone: 402-559-6775
Website: www.nebraskamed.com/patients/child-life
Local Accommodations
Children’s Hospital & Medical Center’s Carolyn Scott Rainbow House: Provides overnight accommodations for families undergoing treatment who live more than 60 miles from Omaha. https://www.childrensomaha.org/Main/Rainbow-House2.aspx
Colleen Cipolla
402-955-7815
ccipolla@childrensomaha.org
Name: Ronald McDonald House Charities
Mission: The mission of Ronald McDonald House Charities in Omaha (RMHC) is to create and operate programs that directly improve the health and well-being of children. We strive to do so by providing opportunities that strengthen children and families during their most difficult and challenging times. The specific purpose of the Ronald McDonald House Charities is to support access to care, reduce financial burden, provide psychosocial support keeping families together, enhance clinical experiences and outcomes and help families resume normalcy.
Website: www.rmhcomaha.org
Phone: (402)346-9377
Email: lkortan@rmhcomaha.org
Geographical Areas: We serve any person age 21 and under seeking medical treatment in Omaha with a permanent residence at least 35 miles away or further.
Director: Lindsey Rai Kortan
Facebook: https://www.facebook.com/rmhcomaha/
Twitter: https://twitter.com/rmhcomaha
Instagram: @rmhomaha
Additional contacts: Kari Ketcham, kketcham@rmhcomaha.org
Research Funding
Name: EmmaStrong, Inc.
Mission: The EmmaStrong Foundation is focused on spreading awareness about the need for funding in the area of Pediatric Brain Tumors. We are comitted to creating research opportunities to better the treatments and lives of these children. These children have not had the opportunity to experience all that life has to offer, join us in making this happen.
Website: www.emmastrong.com
Facebook: Emma Strong, Inc
Phone: 402-690-2238
Email: brent@emmastrong.com
Geographical Areas: Eastern Nebraska
Director: Brent Gehring
Name: Lolo’s Angels, Inc.
Mission: Lolo’s Angels, Inc. raised money for pediatric cancer research, runs blood and bone marrow drives, raises awareness for pediatric cancer, and provides support for children and families throughout treatment through the organization’s many service projects.
Website: lolosangels.org
Phone: 402-203-7392
Email: lhacker@lolosangels.org
Social Media:Facebook: Lolo’s Angels, Inc. Twitter @lolosangels.org You Tube: Lolo’s Story
Geographical Areas: Nebraska, Western Iowa, Kansas, and South Dakota
Founder & President: LesLee Hacker
Additional contacts: Volunteer Contact: Megan Kaup-2nd Vice President-megz94@yahoo.com : Bone Marrow Drive Coordinator-1st Vice-President Sara Wachter-
Name: Sammy’s Superheroes Foundation
Mission: Sammy’s Superheroes Foundation’s mission is support child-specific research that will lead to life-saving, modern treatments for all types of childhood cancer, paving the road to a cure!
Website:www.sammyssuperheroes.org
Phone: 402-563-4673
Email: info@sammyssuperheroes.org
Geographical Areas: Midwest
Director: Alyssa Hogeland
Name: The Cure Starts Now
Main Site: thecurestartsnow.org
Nebraska Chapter: https://thecurestartsnow.org/get-involved/chapters/nebraska/
Email: jesse.shumaker@thecurestartsnow.org
Phone number for Nebraska Chapter: 402-203-2509
Geographical Areas of those you serve: We represent the Nebraska Chapter, but the organization is made up of over 40 chapters across the U.S., Canada, and Australia, funding the most promising research worldwide.
Nebraska Chapter Director: Jesse Shumaker
Facebook: Nebraska Chapter – https://www.facebook.com/nebraska.thecurestartsnow/
Facebook: Main Page – https://www.facebook.com/TheCureStartsNow/
Youtube: https://www.youtube.com/channel/UCYkSQdpd3u3uoa3P3IpMTBw
Twitter: https://twitter.com/curestartsnow?lang=en
Instagram: https://www.instagram.com/curestartsnow/
Additional contacts:
Office Number: 513-772-4888
Keith Desserich – Chairman of the Board
Brooke Desserich, Executive Director
Resources for families funded by The Cure Starts Now:
- http://www.monkeyinmychair.org/ – A program for any child battling cancer to help them stay in touch with their class. 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 to help teachers explain to students the situation their classmate is facing and how it affects them, teacher companion guide, along with other items that can be utilized by the child and/or their classmates. All kits are sent out at no cost to the families or hospitals.
- https://dipgwarrior.org/ – DIPG Warrior is The Cure Starts Now’s way to help your family and friends through: awareness, support, fundraising, and more than anything, honoring your DIPG Warrior.
- https://dipg.org/ – the centralized of information about DIPG for families, clinicians, and researchers. Includes facts about the disease, what to do after diagnosis, updated list of clinical trials, research efforts, information about the DIPG Registry, etc.
Transportation
Name: Wear Yellow Nebraska
Mission: To provide service, support, and community for Nebraska’s cancer survivors
Website: www.wearyellownebraska.org
Phone: 402-965-1699
Email: contactus@wearyellownebraska.org
Geographical Areas: Currently, Omaha, Lincoln, and Fremont metro areas
Director: Michael Merritt
Facebook: https://www.facebook.com/WearYellowNebraska
Twitter: https://twitter.com/wearyellowne
Instagram: http://www.instagram.com/wearyellownebraska
Youtube: http://www.youtube.com/user/WearYellowNebraska
Additional contacts: Board of Directors https://www.wearyellownebraska.org/about/
We have complied a list of foundations located right here in Nebraska that support children battling cancer and their families in a number of ways. Learn how you can donate and support the fight against childhood cancer!
