2024 Survivorship Champion's Prize
Our Survivorship Program, led by Dr. Smita Dandekar, has been named the recipient of the 2024 Survivorship Champion's Prize by The Stewart Initiative for Childhood Cancer Survivors.
The Children’s Cancer Cause Survivorship Champion’s Prize is an annual award presented to a group, program, or institution making significant advances in programs and services to provide life-long health maintenance for survivors of pediatric cancers. The selection committee lauded this program for its model of healthcare transitions to long-term care after treatment, engagement of primary care providers, use of telemedicine, and its large rural outreach area.
Thriving after Childhood Cancer
The mission of the Penn State Health Children’s Hospital Childhood Cancer Survivorship Clinic is to educate survivors about the possible late effects that may occur as a result of the therapy they received and monitor them closely for these effects. Appointments are available for ongoing, annual care, as well as single consultations.
Understanding the Survivorship Clinic
Who is eligible?
Eligible individuals must have completed therapy at least two years before joining the Survivorship Clinic.
What to expect
What happens during a visit to the Penn State Health Children’s Hospital Childhood Cancer Survivorship Clinic?
In this multidisciplinary clinic, survivors meet with a physician, survivorship clinic coordinator, social worker, neuropsychologist and cancer genetic counselor. Visits include:
- Personalized education about the survivor’s cancer therapy and risk for late effects. Survivors receive an individualized treatment summary outlining total chemotherapy, radiation, surgeries and other interventions during treatment.
- Evaluation for late effects by a physician. Each survivor is assessed for potential long-term complications that may affect the individual’s quality of life or predispose him or her to future health risks. Appropriate coordination of care with additional specialists is made, if necessary. Each survivor also receives a customized plan for long-term follow-up and surveillance testing to monitor risk-based late effects.
- Meeting with the social worker to discuss school, work, behavioral, emotional, relationship or financial concerns, health insurance questions and survivorship resources.
- Assessment by neuropsychologist for any neurocognitive late effects from previous treatments.
- Meeting with a cancer genetic counselor to help identify whether or not a survivor's cancer may be associated with an inherited cancer syndrome and facilitate genetic testing when indicated. The genetic counselor will obtain family history information and discuss the benefits and limitations of genetic testing.
What is a late effect?
Late effects can create challenges for various aspects of growth, development, and organ functions include:
- Bone health
- Dental health
- Emotional health
- Fertility
- Heart health
- Kidney health
- Learning
- Liver health
- Lung health
- Thyroid health
- Vision and hearing
This growing population of long-term survivors is at risk for adverse effects related to their cancer and subsequent therapy. These adverse effects, known as late effects, may not become apparent until years later. Approximately two-thirds of childhood cancer survivors experience at least one late effect.
Transition to adult care
Once a survivor reaches age 30, he or she moves from the Survivorship Clinic to an adult primary care physician, and the team provides a packet to the new physician to ensure an easy transition.
Resources for Adolescents and Young Adults
A number of resources are available to adolescents and young adults who have been diagnosed with cancer or had a loved one with cancer including a variety of events, including support groups, camps, and social gatherings. These events can help survivors connect with others who understand what they're going through and can provide emotional, spiritual and social support.
Events
- THON Mini-Reveal Party sponsored by Four Diamonds (Feb. 23, 3 p.m.) - this event is open to everyone. Light refreshments will be served. Join other Four Diamonds families at the Treehouse Café located inside Penn State Children’s Hospital to watch the THON reveal. No need to RSVP.
- Sitting Together with Empathy and Emotional Perseverance: Anger (Mar. 4, 7- 8:30 p.m. EST) - this a clinician-led virtual space to acknowledge the emotions that we often think we “shouldn’t or don’t want to feel. This session is offered for any AYA (ages 15-39) at any point of their cancer experience. This program is organized through Elephants and Tea. Click here for more information and/or registration
- Discussion Session: The Effect of Treatment (Mar. 12-19, Noon-1:30 p.m. EST) -this discussion session organized by Stupid Cancer will focus on the importance of taking ownership of your physical health and wellness during and after your cancer treatment. Join and connect with other AYA community members who are navigating what it looks like to manage the effects of cancer – the physical, the emotional, and everything in between. Click here for more information and/or registration
- Digital Meet Up: Let’s Get Crafty (Mar. 13, 8-9:00 p.m. EST) - this digital meet up offered by Stupid Cancer. No crafting experience is needed. Click here for more information and/or registration
- Guided Yoga Nidra Meditation with Mamma G (Mar. 17, 8 p.m. EST) - Angie Giallouraskis (aka Mamma G) in collaboration with Cactus Cancer Society will be leading a virtual guided yoga Nidra meditation class. March’s theme class will focus on “Coming to Awareness.” No yoga experience is necessary. Click here for more information and/or registration
- Breathe Now Couples Retreat (Mar. 20 - Mar. 24, Oct. 23 - Oct. 27) – Dear Jack Foundation will be holding Breathe Now Couples retreats in Chester NY. These retreats are four days of wellness that target young adult survivors (age 21-39 years old) and their partners who are one to three years off treatment. Registrations for the March retreat close on Jan. 10. Click here to apply for these wellness retreats
- Healing Through Writing Workshop: My Identity After Cancer (Mar. 27, 7 p.m. EST) - join Elephants and Tea for a virtual writing workshop. This will explore therapeutic writing as a form of processing and coping with one’s cancer experience. Participants will feel the power of writing and sharing parts of their story not only to help others, but to help aid in their own healing. Elephants and tea staff will guide participants through writing prompts and an open discussion after each exercise. No experience in writing is necessary. Click here for more information and/or registration
- Revitalize Your Career: Leveraging LinkedIn to Jumpstart Your Work Journey (Mar. 24, 8 p.m. EST) - join Dear Jack Foundation for this webinar that will assist with jumpstarting your career and re-engage with the professional world by maximizing the power of LinkedIN. From optimizing your profile to building a strong network, you’ll learn practical strategies to boost your visibility, enhance your personal brand, and create new career opportunities. Whether you’re returning to the workforce or looking to take your career to the next level, this session will equip you with the tools you need to succeed. Click here for more information and/or registration
- Just Us: Father & Survivor Retreat (May 30-Jun. 1 located at Happiness is Camping in Hardwick NJ - the Just Us retreat is offered by the Children’s Brain Tumor Foundation and offered for fathers and survivors of brain and spinal cord tumors. Just Us provides unique opportunities for fathers to have discussions with and without their children, participate in team-building activities and enjoy quality time together. Click here for more information and/or registration
- Cancer Con (Aug. 21-25) - CancerCon is a gathering for adolescents and young adult cancer community. Each year, CancerCon brings together hundreds of patients, survivors, advocates, and health professionals to learn, share, and build community. This year, CancerCon will be held in Washington DC. For more details and registration: https://stupidcancer.org/cancercon/
Local Support and Supportive Opportunities
Summer Camps
Camp Can Do – located in Mt. Gretna Pennsylvania
Camp Can Do is for children, ages 8-17 who have been diagnosed with cancer in the last 5 years. A special session offered is Camp Can Do II, a sibling camp for kids, ages 8-17 whose brother or sister has been diagnosed with cancer. Camp Can Do occurs at Gretna Glen Camp and Retreat Center in Mt. Gretna, PA. There is a lake for boating, fishing and a swimming pool. Special offerings include a low and high ropes course, a trust trail, a giant climbing wall, and a zip line.
Camp Casco – located in Groton Massachusetts
Camp Casco Oncology Camp is a free one-of-a-kind overnight experience created especially for children ages 7-17 who have been diagnosed with cancer or had cancer. A sibling camp session is available for kids ages 9-17 who have had a brother or sister diagnosed with cancer. Nestled in Groton, MA, this camp offers a chance to leave worries behind and connect with others who understand their journey. Campers enjoy swimming in the lake, obstacle courses, arts & crafts, team-building games, campfires, and much more.
Camp Catch-A-Rainbow – located in Jackson Michigan
Camp Catch-A-Rainbow (CCAR) enriches the lives of children between 4-17 years old who are being treated for cancer or in remission. Campers enjoy swimming, archery, horseback riding, high adventure rope courses, arts and crafts, canoeing and more. All campers can experience camp at no cost.
Camp Courage – located in Denver Colorado
Camp Courage is housed at the Balarat Outdoor Education Center near Jamestown Colorado and is a free camp for kids and their siblings dealing with a cancer diagnosis. Camp Courage is not a “cancer camp” where cancer is the focus; it’s a place where kids can be kids. Activities include fishing in an on-site pond, a zip line, the Big Swing, a high ropes course, archery, horseback riding, boating, camp crafts, and hiking.
Camp Dost – located in Danville Pennsylvania
Camp Dost is held at Camp Victory, a special needs camping facility, located in Millville, Pennsylvania. Camp Dost is open for campers ages 5 to 18 who have been diagnosed with cancer. Siblings of patient campers can share the experience as well. Activities include: rope climbing, swimming, arts and crafts, music, biking, fishing and more.
Camp Dream Street – Camps are located in Arizona and California
Camp Dream Street provides camping programs for children and young adults with chronic and life-threatening illnesses. Camp activities include horseback riding, swimming, arts and crafts, sports, archery, go-carts, rock wall climbing, rope courses and many other fun activities.
Camp Enchantment – located in New Mexico
Camp Enchantment is a week-long camp for children with cancer or in cancer survivorship. Camp is open to children ages 7 to 17. Campers participate in various activities such as arts and crafts, campfires, mountain biking, scuba diving and more.
Camp Firefly – located in Fawnskin California
Camp Firefly is located at YMCA Camp Whittle a five-day and four-night medically supervised residential camp. Campers are comprised of children who have or are battling cancer, their siblings and bereaved siblings.
Camp Good Days & Special Times – located on the shores of Keuka Lake New York
Camp Good Days & Special Times offers weeklong summer camping sessions for families who have been touched by cancer or sickle cell anemia.
Camp Goodtimes at YMCA Camp Reed – located in Spokane Washington
Camp Goodtimes is offered for children diagnosed with cancer, on or off therapy. Camp Goodtimes highlights include college team visits, tie-dye extravaganza, bass fishing day and typical camp activities.
Camp Happy Times (The Valerie Fund) – located in Wayne County Pennsylvania
For over 40 years, The Valerie Fund has operated Camp Happy Times, a one-week overnight camp experience for any child ages 5-21 who has or has had cancer, regardless of where they are treated. Activities include: rock wall, tubing, arts and crafts, swimming, basketball, gaga ball and tennis.
Camp HIS KIDS – located in Waterloo Illinois
Camp HIS KIDS is open for children ages 7-17 with cancer either on treatment or had treatment in the past, siblings of children currently or previously on treatment and bereaved siblings. Camp activities include swimming, arts and crafts, team building, archery, tie-dye, fishing, nature hikes, enjoy s’mores, and more.
Camp Horizon - located in Kingston Springs, Tennessee
Camp Horizon was originally founded in 1983 by the American Cancer Society. Camp Horizon is a camp for children and their siblings ages 6 to 17 who have been diagnosed with cancer or received cancer treatment within the last five years.
Camp Journey – located in Post Falls Idaho
Camp Journey is designed for children ages 7 to 1o 17 cancer patients and survivors. Campers are invited to bring one sibling or friend to share in the camp experience. Camp activities include: swimming, beach games, arts and crafts, hikes, singing, campfires, napping, special theme-related activities, boating, archery, ropes course, dancing, cooking and climbing.
Camp Kids are Kids Chicago – located in Chicago Illinois
Camp Kids are Kids Chicago is for children who have been diagnosed with cancer (currently in treatment or remission) and their siblings who are between the ages of 7 to 17. Camp Kids are Chicago is an urban camp where campers stay in a Hilton hotel that magically transforms into bunk cabins. Campers enjoy campfires, talent shows, arts and crafts, games and exciting excursions to attractions throughout the city.
Camp Mak-A-Dream - located in Gold Creek Montana
Camp Mak-A-Dream empowers survivors and their families to live with and beyond cancer through life-changing Montana experiences where they strengthen life skills, gain resilience and develop lasting relationships. Programs are offered for adults, young adults, teen, youth, family, and siblings.
Camp No Worries – located in Tabernacle New Jersey
Camp No Worries is an overnight camp for children ages 6-16 who have or have had cancer, their siblings and bereaved siblings. Camp activities include: arts and crafts, nature, land sports, boating, swimming, campfire sing-a-longs, teambuilding, range, climbing wall, zipline, cooking, all camp-themed activities and special off-site evenings for teens.
Camp One Step – located throughout the United States
Camp One Step provides free year-round camp experiences for kids with cancer (where newly diagnosed, in-treatment, or in remission), and their families. Camp One Step's annual summer camp is located in Williams Bay, Wisconsin. Camp activities include: swimming, fishing, watercraft, sports, games, field activities, STEM and excursions.
Camp Peach Pals – located in Midtown Atlanta Georgia
Camp Peach Pals is a free summer camp for children ages 7-12 living with and beyond cancer. Camp takes place in the heart of Midtown at Four Seasons Hotel Atlanta where luxurious suites and event spaces are transformed into the ultimate summer camp experience.
Camp Rising Sun – located in Colebrook Connecticut
Camp Rising Sun is open to children ages 5-17 who have ever faced a diagnosis of cancer, as well as their siblings. Campers can be in treatment, in remission, or anywhere in between. Campers will participate in a wide variety of activities such as horseback riding, rock climbing, arts and crafts, a talent show, dance and a firework show.
Camp Simcha – located in Glen Spey New York
Camp Simcha is open to children ages 6-20 on active treatment or who are post-treatment. Camp activities include sports, swimming, boating, arts and crafts, climbing wall, zip-line, paintball, photography, videography, interactive games and shows.
Camp Sunrise – located near Monkton Maryland
Camp Sunrise is open to children between the ages of 4-18 who are currently being treated for cancer, have completed cancer treatment, or have undergone a bone marrow transplant. Camp activities include swimming, arts and crafts, sports, games, newsletters, field trips, campfires, archery, nature walks, a fun-filled Friday night dance and so much more.
Camp Sunshine at Sebago Lake – located in Sebago Lake Maine
Camp Sunshine offers programs for families who have children diagnosed with cancer and other illnesses.
Happiness is Camping – located in Hardwick New Jersey
Happiness is Camping offers several camping sessions for children ages 5-17 who have had cancer and their families. A young adult weekend is offered for young adults ages 18-25 and their siblings who have or had cancer as well. Camp activities include: swimming, archery, arts and crafts, ropes course, arcade games, sports, drama, nature, STEM, camp prom, Hollywood premiere, talent show, movie night, Lip Sync battle, casino night, pool party, color wars, Star Wars Theme Night and outside entertainment.
Kamp KACE (Kids Against Cancer Everywhere) – located near Fargo North Dakota
Kamp KACE accepts campers ages 7 to 17 who are cancer patients or survivors and their siblings.
Kids Need More Camp Adventure – located in Copiague New York
Camp Adventure is open for children ages 6-18 who are cancer patients either on or off treatment, regardless of how long the child has been in remission and their siblings. Featured activities are: swimming, arts and crafts, nature, sports and a little “camp chaos.”
KyMel, Inc/Camp Hope and Camp SIBsational – located in Kansas
Camp Hope and Camp SIBsational is open for children ages 5-17 who have or have had cancer and their siblings. Camp activities include: swimming, bowling, miniature golf, fishing, hiking, archery, arts and crafts and more.
Sky High Hope Camp – located in Colorado
Sky High Hope Camp is open for children and teens ages 8-18 with current or past cancer and their siblings. Activities include: arts and crafts, nature studies, high and low rope course, 9-square, archery, a themed dance, camper skits, music and much more.
Special Love, Inc/Camp Fantastic – located in Front Royal Virginia
Camp Fantastic is a week-long camp for children ages 7 to 17 who’ve received cancer treatment within the past three years. Camp activities include swimming, canoeing, horseback riding, marshmallow roasting, campfire singing, and much more.
Websites, Podcasts and Apps
- Adolescent and Young Adult Cancer
- Cactus Society
- Cancer Exercise App (ISO only)
- Cancer.gov (National Cancer Institute)
- Critical Mass: The Young Adult
- Elephants and Tea
- Life on Pause Podcast
- Managing Mental Health After A Cancer Diagnosis (Georgetown University School of Nursing)
- Stupid Cancer
- Teen Cancer America
- The Ulman Cancer Fund for Young Adults
- Young Adult Cancer Connection: Meet your cell mates
- Young Survival Coalition
Scholarships for Pediatric Cancer Survivors
A number of organizations offer college scholarships for pediatric cancer survivors. Explore individual scholarships, scholarship directories and other resources here.
Scholarship Guide
There are several scholarship opportunities for you to consider. Scholarships are available for individuals in current treatment, cancer survivors and family members that have been affected by cancer.
Making the Right Transition into College
Transitioning into college can be difficult for any student, but as a childhood cancer survivor, this transition can be even more of a challenge.
Resources
- Affordable Colleges Online: Article regarding helpful resources for cancer survivors.
- American Cancer Society: Resource searches based on diagnosis.
- American Society of Clinical Oncology (ASCO): Extensive list of resources for scholarships and other financial information, as well as reliable information on disease and survivorship.
- Livestrong: Extensive resources for financial, fertility, education, health, etc.
- National Coalition for Cancer Survivorship: Information on employment rights, etc.
- PA Career Link: Job training resources, resume writing, other helpful counseling regarding employment.
- PA Office of Vocational Rehabilitation (OVR): Provides employment and training assistance to patients who have experienced significant health events and/or disabilities.
- Stupid Cancer: Financial assistance lists for college scholarships and daily living expenses.
- U.S. Equal Employment Opportunity Commission: Enforces Federal laws prohibiting employment discrimination. These laws protect you against employment discrimination.
Support the Survivorship Clinic
The Childhood Cancer Survivorship Clinic at Penn State Health Children’s Hospital is funded through Four Diamonds.
Since its creation in 1972, Four Diamonds has helped nearly 4,000 children and families and supported a diverse platform of childhood cancer research at Penn State Health Children’s Hospital, seeking improved treatments and cures to benefit kids around the world.
The Four Diamonds mission is to conquer childhood cancer by assisting children and their families through superior care, comprehensive support and innovative research.
Four Diamonds covers 100 percent of all medical expenses related to cancer care not covered by insurance for eligible Four Diamonds children. Because of the community’s steady and generous support, Four Diamonds has assisted 100 percent of the childhood cancer patients who have been treated at Penn State Health Children’s Hospital.