P.J. presented with a tumor measuring 3.7 x 3.5 x 7.7 cm in her right mandible. A biopsy of the tumor classified it as Ewing sarcoma. Radiation oncologist and medical director of the Roberts Proton Therapy Center Zelig Tochner, M.D., evaluated P.J.’s case and was quick to recommend proton therapy.
Use this kid-friendly tour of our Proton Therapy Center to prepare your child for their first day of treatment.
Support and Education Groups
http://cancersupportphiladelphia.org/
Provides a safe and supportive environment dedicated to providing support, education and hope to people affected by cancer.
http://gildasclubsouthjersey.org/
It offers support groups, lectures, workshops and social events as a supplement to medical care in a warm and welcoming home-like setting.
Podcasts
Listen in to podcast where adolescents and young adults (AYA) from the Cancer Center at The Children's Hospital of Philadelphia discuss their experiences with cancer diagnosis and treatment.
For Patients
If you are an adolescent or young adult (AYA) with cancer, you probably have many questions. We understand that not everyone wants to ask their questions out loud, so we’ve compiled a list of those that are often asked.
The goal of the program is to connect adolescents or young adults recently diagnosed with cancer with a young adult who has completed cancer treatment. Learn more about our Oncology Peer-to-Peer Mentoring Program and how you can participate.
http://www.childrensoncologygroup.org/index.php/cog-family-handbook
The Children's Oncology Group Family Handbook can help answer many of the questions that families of children with cancer ask about treatment, support and follow-up care.
The Resource Guide for Adolescent and Young Adult Survivors of Cancer offers important resources that may be helpful to adolescent and young adult (AYA) survivors of cancer.
The Cellie Cancer Coping Kit, developed by experts at CHOP, includes a stuffed toy, cancer coping cards, and a book for caregivers.
For Parents and Caregivers
Patient-family education materials provide educational information to help individuals and families facing childhood cancer.
This childhood cancer infographic was designed by the Cancer Center at CHOP to describe challenges facing pediatric cancer researchers, doctors and patients.
http://mibg.chop.edu/
This information will help patients and caregivers understand what to expect during MIBG, and how to prepare for this unique treatment.
Videos
This video series is designed to help referring oncologists and families better understand the different treatment options for patients with difficult or hard to treat cancers.
Social workers discuss the complexities of caregiving, how to have caring, honest conversation with members of the family around the topic of caregiving, and offer tips on how to manage the unique role of the caregiver.
Psychologist Meghan Marsac discusses coping strategies for families facing childhood cancer.
Pediatric cancer researchers discuss clinical trials, which are among the fastest and safest ways to find treatments that work against pediatric cancer.
The Children's Hospital of Philadelphia has one of the best fertility preservation programs in pediatric oncology, offering choices for teenagers and young women as well as girls who have not yet experienced puberty.
While preserving fertility is an important topic for families to discuss before cancer treatment begins, it can also lead to some uncomfortable conversations.
This animation explains to children how cancer immunotherapy (T-cell therapy) works in simple terms that kids can understand.
Children's Hospital of Philadelphia (CHOP) patients and staff show you around the oncology space at the Buerger Center for Advanced Pediatric Care on the Raymond G. Perelman Campus.
Children's Hospital of Philadelphia (CHOP) patients and staff show you around the oncology space at the King of Prussia Specialty Care & Surgery Center.
Children's Hospital of Philadelphia (CHOP) patients and staff show you around the oncology space at the Specialty Care & Surgery Center in Voorhees, NJ.
Pediatric brain tumor experts from the Children's Brain Tumor Tissue Consortium (CBTTC) at CHOP discussed the latest research in pediatric neuro-oncology in a webinar held May 15, 2015.
Dr. Lamia Barakat discusses the ways childhood cancer affects the child, parents and siblings, focusing on the experience of post-traumatic stress symptoms and post-traumatic growth.
In this webinar, art therapist and licensed professional counselor, Jennifer Lemisch discusses the fears and worries of children who have lost a sibling, and offers guidance to parents in this situation.
CHOP's pediatric surgical oncology team consists of experts with extensive experience in various types of cancers, including neuroblastoma, brain and bone tumors, as well as other rare and hard-to-treat cancers.
Psychologist Lynne Kaplan, PhD, and child life specialist Sarah Pajak discuss the experience of siblings of a childhood cancer patient.
In this webinar CHOP experts discuss neuropsychological evaluation, the legal rights of students, and how to support your child as he returns to learning.
Take a tour of the Cancer Immunotherapy Program with Paulina, who traveled to Philadelphia from Mexico for T-cell therapy for acute lymphoblastic leukemia.
Watch a video about inpatient rehabilitation services for children and adolescents at Children's Hospital of Philadelphia (CHOP).
Proton therapy is an alternative to traditional radiation treatment. We've taken the lead in this breakthrough new treatment by investing in the Roberts Proton Therapy Center.
Proton therapy is an alternative to traditional radiation treatment for childhood brain tumors. Learn how it works.
Websites
http://lookgoodfeelbetter.org/2bMe/2bMe.html
2bme is home to a collection of short articles for teens with cancer. Topics include handling non-medical issues like diet, body image and relationships.
https://www.cancer.org/cancer/cancer-in-children.html
The American Cancer Society website offers helpful information about childhood cancer diagnosis, treatment, prognosis and resources.
https://www.acco.org
The American Childhood Cancer Organization® is the largest publisher and distributor of free childhood cancer books in the country.
https://www.asco.org/
ASCO provides oncologist-approved information on more than 120 types of cancer and cancer-related syndromes.
https://compassioncantwait.org/
The Andre Sobel River of Life Foundation helps with urgent expenses to allow single parents to stay at their child's bedside during catastrophic illness.
http://www.beyondthecure.org/
It awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation.
http://www.bmcf.net/
The fund supports patients 18-40 currently undergoing cancer treatment with services to meet daily needs.
http://www.brianmordenfoundation.org/
Provides funds for Ewing's sarcoma and childhood cancer research; supports patients and families; and provides higher education scholarships.
http://www.cancerhopenetwork.org/
Cancer Hope Network provides free and confidential one-on-one emotional support to cancer patients, their caregivers, and their family members.
http://csn.cancer.org/
The Cancer Survivors Network of the American Cancer Society offers discussion boards and chatrooms where you can meet your CSN "neighbors" and develop friendships.
https://www.cancersurvivorsfund.org/
A non-profit organization providing college scholarships and prosthetics to benefit people diagnosed with cancer, receiving treatment for cancer or in remission.
http://www.cancercare.org/
CancerCare provides telephone, online and face-to-face counseling, support groups, education, publications and financial assistance to people facing a cancer diagnosis.
http://www.cancercare.org/tagged/young_adults
Offers specialized services for young adults, caregivers and those who have lost a loved one
http://www.caringbridge.org/
It lets you create a free website that acts as a virtual diary of your child's cancer experience. Update it at anytime, from anywhere, to keep your family and friends up to date.
http://www.chailifeline.org/
Chai Lifeline offers programs that address the emotional, social and financial needs of seriously ill children and their families.
http://chemoangels.wix.com/chemo-angels-1/
It offers support to those who find themselves in the most challenging situation of their lives — battling a cancer diagnosis and undergoing treatment.
http://www.cncfhope.org/
The Children’s Neuroblastoma Cancer Foundation (CNCF) is the premier source for neuroblastoma information and resources.
http://chemo.starlight.org
Helps teens with cancer navigate their chemotherapy treatments through education and by fostering connections with others through blogging and chat rooms.
http://criticalmass.org/
Critical Mass is a coalition of organizations which have the collective goal to improve survival rates and quality of life for young adults with cancer.
http://www.curesearch.org/
CureSearch for Children's Cancer contains a wealth of information on diagnosis and treatment of childhood cancer and the late effects of cancer therapy. CureSearch provides educational and coping resources to families affected by childhood cancer.
http://www.eaglesfly.org/
Supports pediatric cancer and leukemia research at three Delaware Valley hospitals, helping their world renowned scientists in the quest for a cure
http://www.dol.gov/whd/fmla/
The FMLA allows eligible employees up to a total of 12 work weeks of unpaid leave during any 12-month period in order to care for their seriously ill child.
http://firstdescents.org/
Offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis.
http://ellasretreat.org/index.html
Ella's Retreat helps families with children receiving proton therapy at CHOP find and pay for a place to stay during treatment.
http://www.grouploop.org/
Group Loop provides online support, information and resources for teens living with cancer and their families.
http://www.headcovers.com/
Headcovers Unlimited has hats, turbans and wigs for hair loss and cancer patients.
http://www.ncbi.nlm.nih.gov/books/NBK1548/
NCBI's GeneReviews offers detailed information about hereditary paraganglioma-pheochronocytoma syndromes, disease characteristics, diagnostic testing, treatment options and more.
http://www.imermanangels.org/
Is a one-on-one cancer support service that connects a person fighting cancer with a survivor who has beaten the same type of cancer.
http://www.lls.org/
The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary (nonprofit) health organization dedicated to funding blood cancer research and providing education and patient services.
http://www.survivorshipguidelines.org/
Learn about the potential late effects of pediatric cancer treatment, including their screening and management.
http://www.lotsahelpinghands.com/
Lotsa Helping Hands lets you create a free, private, online community to organize family, friends, neighbors and colleagues during times of need.
https://oc-cf.academicworks.com/opportunities/21
The Michael A. Hunter Memorial Scholarship Fund awards annual scholarships to help improve the quality of life for those affected by leukemia/lymphoma.
http://www.braintumor.org/
The National Brain Tumor Society is committed to moving research toward new treatments, fighting for policies that improve lives, and providing information and resources.
http://www.cancer.gov/cancertopics/types/childhoodcancers
NCI's website includes links to information about treatment, clinical trials, testing and research.
https://www.cancer.gov/publications/dictionaries/cancer-terms
The NCI Dictionary of Cancer Terms features 8,250 terms related to cancer and medicine.
http://www.canceradvocacy.org/
The mission of the National Coalition for Cancer Survivorship is to advocate for quality cancer care for all people touched by cancer.
http://www.oncolink.org/index.cfm
OncoLink is a website maintained by the Abramson Cancer Center at the Hospital of the University of Pennsylvania. It features a wide variety of information on adult and pediatric cancers.
http://www.curethekids.org/about-us/#.Uxit2c7DUsA
The Pediatric Brain Tumor Foundation provides free educational information about brain tumors, college scholarships and Ride for Kids motorcycle charity events.
http://www.pheoparatroopers.org/
The Pheo Para Troopers provides information and resources about pheochromocytoma and paraganglioma for patients and families.
http://www.pheochromocytoma.org/
The Pheochromocytoma Organization offers support and information about pheochromocytoma and related conditions.
http://myplanet.planetcancer.org/
Planet Cancer is an online community for people in their 20s and 30s with cancer.
http://www.preparetolive.org/
Prepare to Live is the only nonprofit, charitable organization founded and managed by cancer survivors, dedicated to using the power of the Web and documentary-style filmmaking.
http://www.saras-smiles.org/index.html
Sara's Smiles Foundation provides a variety of resources to entertain, comfort and educate children with cancer.
http://www.seanfischelconnect.org/
Sean Fischel Connect Inc. honors the memory of Sean Michael Fischel, who lost his life after battling a rare disease called hemophagocytic lymphohistiocytosis (HLH).
http://www.siblingsupport.org/
It's a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.
http://www.songsoflove.org/
It's a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.
http://www.health.pa.gov/My%20Health/Infant%20and%20Childrens%20Health/Special%20Kids%20Network/Pages/default.aspx#.V7HdiJMrLUI
It provides information to families in PA regarding special health issues and community resources. It also links families facing similar experiences together.
http://specialspaces.org/
Volunteers from Special Spaces interview the child and family and in one day of work, create a dream room at no cost to the family.
https://www.starbrightworld.org/
Starbright World is an online social network for teens with chronic and life-threatening illnesses and their siblings.
http://www.starlight.org/
It provides entertainment, education and family activities to help children with chronic and life-threatening illnesses to cope with the pain, fear and isolation of prolonged illness.
http://stupidcancer.org/
Stupid Cancer is an all-inclusive young adult cancer community that empowers those affected by young adult cancer.
http://www.goteamimpact.org/
Team IMPACT is a nonprofit chartered to improve the quality of life for children facing life-threatening illnesses.
http://www.canusofoundation.org/
It has raised more than $2 million for cancer research at The Children’s Hospital of Philadelphia and has provided assistance and support to countless families and individuals affected by cancer.
http://graceamerica.org/GraceFoundation/
It provides free college admissions and financial aid counseling to high-school and college-aged children and their families who are dealing with issues related to pediatric cancer.
http://www.stupidcancer.org/
This website provides practical information from other young cancer spouses about the issues facing young couples fighting cancer.
Coping
After the Diagnosis: Helping My Family Cope is an information sheet for families from The Children's Hospital of Philadelphia that offers advice for coping with the stress of a cancer diagnosis.
This tool will help children with cancer and their caregivers learn all the the ways they can use the Cellie Cancer Coping Kit during cancer treatment.
These guided audio recordings can help create a more peaceful and restful state of mind for parents, caregivers, and adolescent/young adult patients.
Books
http://www.amazon.com/Chemo-craziness-comfort-childhood-cancer/dp/0972404309
This book provides clear explanations and practical advice for children ages 6-12 through warm and funny illustrations to help them make sense of cancer and its treatment.
http://www.amazon.com/Childhood-Brain-Spinal-Cord-Tumors/dp/1941089003/
This guide includes descriptions of the newest brain and spinal cord tumor treatments, as well as practical advice about how to cope with the diagnosis.
http://shop.oreilly.com/product/9781565924604.do
This guide addresses the way that the surgery, radiation, and chemotherapy used to cure childhood cancers can affect growing bodies and developing minds.
https://www.amazon.com/Childhood-Cancer-Parents-Cancers-Patient-Centered/dp/1941089151
This book features detailed and precise medical information about solid tumor childhood cancers, including neuroblastoma, Wilms tumor, liver tumors, soft tissue sarcomas, and bone sarcomas.
http://shop.oreilly.com/product/9780596500153.do
Childhood Leukemia is a book that offers both medical and support information about leukemia in children, along with stories from patients and families.
http://www.amazon.com/Drums-Girls-Dangerous-Jordan-Sonnenblick/dp/0439755204
This is a book for siblings of children with cancer. The main character's world is turned upside down when his brother is diagnosed with leukemia, and he must deal with all the ways his own life changes as a result.
http://www.amazon.com/Imagine-Whats-Possible-Control-During/dp/1604430370
This illustrated healing guide introduces the technique of visualization. It offers children with cancer an effective way to deal with anxiety, pain, fear and the many other challenges.
http://www.amazon.com/Trudy-Krisher-Kathys-Hats-Hardcover/dp/B007NBVY4U/ref=sr_1_4?ie=UTF8&qid=1458576750&sr=8-4&keywords=%E2%80%9CKathy%E2%80%99s%20Hats%3A%20A%20Story%20of%20Hope%E2%80%9D
This is a story of a 9-year-old who has always enjoyed wearing hats. But when she loses her hair from cancer treatments, suddenly hats aren't so much fun anymore.
http://www.amazon.com/Shelter-From-The-Storm-Life-threatening/dp/0738205346
Shelter From The Storm is a compassionate road map to what families of children with life-threatening conditions may have to face.
http://www.amazon.com/The-C-Word-Teenagers-Families-Living/dp/093916521X
In this book, five teens with cancer, their families and best friends are interviewed about the effects the disease has had on their lives.
http://www.amazon.com/You-Leukemia-Lynn-S-Baker/dp/0721614957
Beautifully-illustrated oncology book written for children with leukemia and their parents. Offers a basic, medically accurate explanation of all phases of leukemia, including causes, effects, and treatments.
http://www.amazon.com/Your-Child-Hospital-Practical-Centered/dp/1565925734
Your Child in the Hospital is a practical book of tips and wisdom from veteran parents that will help make any hospital stay easier.
Camps
http://www.campdream.org
Camp Mak-A-Dream offers sessions for cancer patients and their siblings. It's located in Gold Creek, Montana.
http://www.chailifeline.org/programs_category.php?category=summer
It's a kosher camp for children with cancer and other life-threatening illnesses, located on 125 acres in Glen Spey, New York. The camp is one of the many services provided by Chai Lifeline.
http://www.campsunshine.org/
This camp provides respite, professional counseling and recreational opportunities for families facing the physical, emotional and financial strain of a child with a critical illness.
http://www.holeinthewallgang.org/
It serves children between the ages of 7 and 15 who have been diagnosed with cancer or serious blood disorders. Located in Ashford, Connecticut, this camp is free.
http://www.philarmh.org/camp/
This is an overnight camp for kids with cancer and their siblings. It's run by CHOP's Oncology division staff, and provides 24-hour on-site medical coverage.
Hair Loss
http://www.girlonthego.biz/
Girl on the Go provides a private in-home wig consultations for girls and woman going through chemotherapy.
https://www.hairclub.com/hairclub-for-kids/
Hair Club for Kids provides free hair restoration for children battling hair loss as a result of illness.
http://www.hatswithhair.com/
It provides hats with human or synthetic hair attached for girls with hair loss due to chemotherapy.
http://www.locksoflove.org/
Locks of Love offers hairpieces to financially disadvantaged children who are suffering from long-term medical hair loss from any diagnosis.
http://www.wigsforkids.org/
Wigs for Kids is a non-profit organization that provides wigs and accepts hair donations.