30 Reasons to get Engaged for Pediatric Adolescent and Young Adult Cancer
1 reason for each day in September-National Childhood Cancer Awareness Month
- Childhood cancers are the #1 disease killer of children-more than asthma, cystic fibrosis, diabetes, and AIDS combined.
- One in every 330 children will develop cancer before the age of 19
- Common cancer symptoms in children-fever, swollen glands, anemia, bruises and infection. They are often suspected to be, and in the early stages treated as other childhood illnesses
- Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.
- Childhood cancers are cancers that primarily affect children, teens and young adults. When cancer strikes children and young adults, it affects them differently than it would an adult.
- Attempts to detect childhood cancers at an early stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when it is first diagnosed.
- Cancer in children, adolescents and young adults occur regularly, randomly and spares no ethnic group, socioeconomic class or geographic region.
- The cause of most childhood cancers are unknown and at present cannot be prevented.
- On average, 12,500 children and adolescents are diagnosed with cancer every year in the US.
- On average, one in every four elementary schools has a child with cancer.
- On average, every high school in America has 2 students who are a current or former cancer patient.
- In the US, about 46 children and adolescents are diagnosed with cancer every single school day. That’s about the equivalent of 2 entire classrooms.
- While the cancer death rate has dropped dramatically for children that any other age group, 2300 children and teens will die each year from cancer.
- Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancer have proved so resistant to treatment that a cure is illusive.
- Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia and relapsed non-hodgkins lymphoma.
- In the US, incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over age 65.
- Despite these facts, childhood cancer research is VASTLY and CONSISTENTLY underfunded.
- 35% of children will die.
- The overall incidence rate for childhood cancer has increased significantly by almost 33% during the period of 1975-2001.
- On average a treatment for childhood cancer diagnosis is 2 years.
- The National Cancer Institute’s federal budget is about $5 billion. Less than 3% of that goes toward all pediatric cancers combined. The rest goes toward adult cancers. Breast cancer alone receives 12%. Prostate cancer receives 7%.
- The outcome of teenagers with cancer has not improved is 30 years. Young adults aged 15-22 have the lowest cancer survival rate of any age group.
- Teenagers are extremely under-represented in clinical trials for cancer, especially the 15-19 age group. They tend to excluded from both childhood and adult cancer studies, in both cases due to their age.
- In the past 25 years there has only been one new drug treatment developed specifically for pediatric cancers. Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers. For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
- Childhood cancers are more advanced and moving faster at time of diagnosis than adult cancers
- The typical cost to bring a new cancer drug to market ranges from $850 million to $1.3 billion, but our government budgets only $30 million a year for all childhood cancers combined.
- The number of teenagers diagnosed with cancer has increased every year for the past 25 years.
- For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
- Teenagers have the highest fatality rate of any age group under 70.
- Teenagers tend to get the most rare forms of cancer, therefore lacking established treatments.
American Cancer Society (ACS)
1599 Clifton Road, NE
Atlanta , GA 30329-4251US
Phone: (800) 227-2345
The American Cancer Society (ACS) is a nationwide, community-based health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. Chapters throughout the country offer patient services and information on cancer research, prevention, detection, treatment and advocacy. In addition, Chapters offer transportation to appointments, equipment and supplies, social work services, support groups, educational literature, and summer camps for children with cancer. To locate a chapter, go to www.cancer.org.
Association of Cancer Online Resources (ACOR)
ACOR offers information and e-support groups to patients, caregivers or anyone else looking for answers and support related to cancer. ACOR also hosts several pediatric discussion groups. The ACOR website has descriptions of diseases and treatments and links to pertinent information.
Blood & Marrow transplant Information Network
Provides information and emotional support to families facing a bone marrow, blood stem cell or cord blood transplant. Maintains directory of transplant centers, provides links to families who have been through transplant, helps with insurance problems. Books on transplantation and a quarterly newsletter.
Beyond the Cure
One South Memorial Dr., Suite 800
St. Louis, MO 63102
Beyond the Cure is a survivorship program of The National Children’s Cancer Society. This site provides information about the late effects of a childhood cancer diagnosis and treatment.
An online resource tool providing information on understanding cancer and about chemotherapy.
A service of the US National Institute of Health, clinicaltrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations and phone numbers for more details.
Online version of Cure magazine. Offers information on adult, AYA and pediatric cancers and patient guides.
4600 East West Highway
Bethesda, MD 20814
Direct: (240) 235-2240
CureSearch funds the Children’s Oncology Group, the world’s largest children’s cancer research collaborative. This site provides children’s cancer information for parents, patients and friends. The website provides up-to-date information about the various types of children’s cancer along with research trials, definitions and descriptions of tests, procedures and treatments and information to help families manage the emotional aspects of caring for a child with cancer.
The Leukemia & Lymphoma Society
Dedicated to funding blood cancer research, education and patient services, LLS offers a variety of services and programs in support of the mission to cure leukemia, lymphoma, Hodgkin’s disease and myeloma. LLS also offers financial reimbursement for some medications, transportation and procedures for those in need. It also offers financial support towards the cost of co-pays for prescription drugs and/or insurance premiums through its Co-Pay Assistance Program. For more information on LLS programs or to be connected with our chapters, contact The Information Resource Center (IRC). The IRC provides accurate, up-to-date disease and treatment information. Our information specialists are master’s level social workers and health educators. They are available to speak with callers Monday through Friday, 9 a.m. to 6 p.m. EST.
National Cancer Institute (NCI)
The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH), one of eight agencies that compose the Public Health Service (PHS) in the Department of Health and Human Services (DHHS). NCI is the Federal Government’s principal agency for cancer research and training. NCI coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
Through OncoLink you can get comprehensive information about specific types of cancer, updates on cancer treatments, and news about research advances.
National Bone Marrow Donor Program
General information: 1-800-marrow2 or 1-800-627-7692
For patients and their families: 1-888-999-6743
The National Bone Marrow Donor Program (NMDP) is a non-profit organization that facilitates life-saving blood stem cell transplants for patients who do not have a donor in their family. NMDP manages the world’s largest registry of volunteer stem cell donors and cord blood units. In addition, they work to increase access to transplantation through research, advocacy, and public and professional education.
University Hospitals – Rainbow Babies and Children’s Hospital
11100 Euclid Ave.
Cleveland, OH 44106-5000
Phone: 216 844-3345
Family Resource Center: 216-844-5433
Center for survivors of Childhood Cancer: 216-844-3919
Siedman Cancer Center Information Service: 216-844-5432
Cleveland Clinic Foundation
9500 Euclid Ave
Cleveland, OH 44195-5217
Phone: 216 444-5517
Second opinion service 216-444-3223
Children’s Hospital Medical Center of Akron
One Perkins Square
Akron, OH 44308-1062
Phone: 330 543-8730
Each Hope Lodge offers cancer patients and their caregivers a free, temporary place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows guests to focus on getting well. Hope Lodge provides a nurturing, home-like environment where guests can retreat to private rooms or connect with others.
Cleveland Ronald McDonald House
If your child is undergoing current treatment at any Cleveland-area medical center, you may be eligible to stay at the Ronald McDonald House, provided space is available. Rooms are provided on a first come/first served basis.
Saves time getting information out to family and friends. Site allows parents to create a free web page to update friends and family about needs, medical care, medical progress, works like a diary and can upload pictures, as well.
This user-friendly site allows parents to create a free Web page about their child and keep a virtual diary about their experiences. It can be updated at any time and friends and family can access it from any Web browser.
Lots a Helping Hands
Website to help arrange for dinners, etc. for a friend in need.
This is a free, private, web-based communities for organizing friends, family, and colleagues – your ‘circles of community’ – during times of need. Easily coordinate activities and manage volunteers with their intuitive group calendar.
Through programs that address the emotional, social and financial needs of seriously ill children and their families, Chai Lifeline restores normalcy to family life and better enables families to withstand the crises and challenges of serious pediatric illness.
Jeremy Cares Inc.
Founded in 2011, Jeremy Cares Inc is a 501(c)3 non-profit organization with a mission to enrich the lives of families with children dealing with serious illnesses by promoting emotional and social healing by working with other local organizations to support and help the families regain feelings of control, improve self-image, and to diminish the stresses that illness creates for the entire family. This is accomplished by partnering with other facilities in Northeastern Ohio that provide medical care or support to the families.
OncoLink offers a variety of cancer-related information, including articles and writings by patients and their families. The site also has a children’s art gallery.
Starlight Children’s Foundation
Starlight is media-based programs that help seriously ill children and teens cope with their disease and enhance their quality of life.
Help for children with chronic, life-threatening illnesses or disabilities.
The Littlest Heroes
Their mission is to impact the lives of children living with cancer and their families by addressing the economic, emotional and social concerns that accompany childhood cancer through education, assistance and community organization.
The Gathering Place
The Gathering Place opened in January 2000 as a nonprofit, community-based cancer support center to fill an unmet need in the greater Cleveland community. The programs and services offered address the social, emotional, physical, and spiritual needs of individuals with cancer and their support network. The mission of The Gathering Place is to support, educate and empower individuals and families touched by cancer through programs and services provided free of charge.
In October of 2008, we opened a location in Westlake as part of our strategic plan to widen our circle of caring and make our programs more accessible to an even greater number of individuals on the cancer journey. To date The Gathering Place has served more than 21,500 individuals who have made over 120,000 visits.
The Gathering Place serves all individuals with any type of cancer and their family and friends regardless of age, gender, race, ethnicity, religion, or sexual orientation. The clinical staff are all master’s prepared and licensed and provide the highest quality standard of care.
Program & Services
- Two education centers that include lending libraries with over 2,500 books, cds and dvds. Public lectures by local experts offering the latest information on cancer treatments and complementary medicine. The medical librarians will help you research any questions you may have on cancer and its treatment, whether you are newly diagnosed or a long-term survivor.
- Support groups to help you cope with the emotional impact of a cancer diagnosis. There are weekly groups for those diagnosed with cancer and one for family friends, as well as monthly drop-in groups for specific cancers such as breast, leukemia and lymphoma, myeloma and prostate.
- Gentle movement classes such as tai chi and yoga and exercise classes appropriate for any level including those with low energy.
- Nutrition Classes and one-to-one consultations with a licensed dietician as well as healthy cooking classes with visiting chefs.
- Age appropriate support groups, education classes and social activities for children who have a loved one with cancer, and specialized, caring staff to help families every step of the way.
The Gathering Place (East)
The Arnold & Sydell Miller Family Campus
23300 Commerce Park
Beachwood, OH 44122
The Gathering Place (West)
800 Sharon Drive
Westlake, OH 44145
River’s Edge is a place for reflection and action.
This federally registered 501(c)(3) not-for-profit organization provides one-on-one cancer support, connecting cancer fighters, survivors and caregivers. Imerman Angels partners a person fighting cancer with someone who has beaten the same type of cancer. One-on-one relationships give a fighter the chance to ask personal questions and get support from someone who is uniquely familiar with their experience.
This national nonprofit organization provides reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility.
The Never-Ending Squirrel Tale
This website provides practical tips and encouragement for the parents of kids with cancer.
Help Me Grow
Help Me Grow is a state-wide program for expectant parents, newborns, infants, and toddlers that provides health and developmental services so that children start school healthy and ready to learn. Services are designed with the family’s concerns and goals in mind. Help Me Grow is offered on a voluntary basis to families prenatal to when their child turns three. Help Me Grow supports families with newborns, infants, and toddlers by giving health information, positive parenting education, and connecting families to community resources.
Address: 8111 Quincy Avenue, Suite 344 Cleveland, Ohio 44104
This site for teens with cancer provides information on nonmedical topics, from skin and hair issues to fitness and friends.
This site tells the personal stories of children fighting many different types of cancer.
Your child can apply to be “adopted” by a Chemo Angel who, through cards, cheerful notes and small gifts, will provide support and encouragement throughout treatment.
This site provides online support as well as information and resources for teens living with cancer and their families.
This organization for teens and young adults with cancer and life-threatening blood diseases offers retreats and workshops around the country.
Songs of Love
Songs of Love creates free personalized songs for chronically ill children and young adults. Ask your social worker for an application or download one from the website.
Starbright World (part of the Starlight Children’s Foundation) is an online social network for teens with chronic and life-threatening illnesses and their siblings.
Teens Living with Cancer
This site for teens with cancer has information on coping with hair loss, friends, family, school and much more.
The Steven G. AYA Cancer Research Fund
This organization provides funding to nonprofit organizations that conduct educational programs to help AYA cancer survivors and their families address the issues surrounding cancer. Also, provides financial support to assist with travel expenses to the National Institute of Health for cancer patients.
This organization focuses on children who have life threatening illnesses and making their wishes come true.
Now I lay Me Down to Sleep
A professional photography services to children with life threatening conditions, and their families.
Special Wish Foundation
They grant wishes to qualifying infants/children/adolescents from birth through age 20.
Flashes of Hope
Changes the way children with cancer and other life threatening illnesses see themselves through the gift of photography. For families of terminally ill children, they provide a portrait that preserves forever the beauty, grace and dignity of every child.
A Kid Again
Serves children with life threatening illnesses up to age 20, and their immediate families. Their mission is to enrich the lives of children and families by providing year round, fun-filled group activities.
Provides visit to Santa’s village, including transportation, gifts and a visit with Santa.
CancerCare – Young Adult Program
CancerCare offers specialized services for young adults, caregivers and those who have lost a loved one.
First Descents provides whitewater kayaking and other outdoor adventure experiences to promote emotional, psychological and physical healing for young adults with cancer.
I’m Too Young for This! Cancer Foundation
The I’m Too Young For This Cancer Foundation builds online and offline support communities nationwide through local events, social media, educational workshops, an international annual conference and a live weekly talk radio program, The Stupid Cancer Show, which airs Mondays at 8pm ET.
Our innovative and award-winning programs and services have been directly crowdsourced straight from our constituency from the ground up to patch cracks and fill in gaps, just like spackle. In the end, we help young adults fight cancer and empower them to get busy living every single day.
LIVESTRONG Young Adult Alliance
Adult Alliance is a coalition of organizations with the goal of improving survival rates and quality of life for young adults (ages 15 to 40) with cancer.
This organization for teens and young adults with cancer and life-threatening blood diseases offers retreats and workshops around the country.
Planet Cancer is an online community for young adults with cancer.
Prepare to Live
Prepare to Live is a source of help, hope, information and inspiration for young adult patients, survivors and caregivers coping with cancer worldwide.
Rise Above It (RAI)
RAI provides meaningful support to adolescents and young adults affected by cancer. RAI also provides financial assistance to patients ages 15 to 39 who are either undergoing or actively pursuing Phase I, II or III clinical trial treatment options.
The Ulman Cancer Fund for Young Adults
The Ulman Cancer Fund provides support programs, education and resources for young adults with cancer, as well as their families and friends.
Young Cancer Spouses
The emotional and logistical issues a young spouse of a cancer patient faces are vastly different from those faced by spouses of older cancer patients. This is a place to get practical information from other young cancer spouses.
Sibshops Sibling Support Project
A part of the Sibling Support Project, Sibshops are interactive workshops for siblings of kids with special needs. Sibshops focus on peer support and celebrate the many contributions made by brothers and sisters of kids with special needs. Ask your social worker for more information.
This national organization honors, supports and recognizes siblings of children with cancer. Ask the psychosocial staff member assigned to work with your family for more information.
Provides hats, turbans, sleep hats, swim caps and wigs for hair loss due to cancer treatment.
Girl on the Go
Provides private in-home wig consultations for girls and women going through cancer treatment.
Hair Club for Kids
Provides free hair restoration for children battling hair loss as a result of illness.
Provides hats, turbans and wigs for hair loss and cancer patients.
Hip Hats With Hair
Provides hats with human or synthetic hair attached for girls with hair loss that is due to chemotherapy.
Locks of Love
Provides hair pieces to financially disadvantaged children under age 18 suffering from long-term medical hair loss from any diagnosis.
A non-cancer-specific site that offers a unique selection of soft, cute hats for kids.
Wigs for Kids
A nonprofit organization that provides wigs and accepts hair donations.
Provides free or low-cost wigs to women and girls who have lost hair due to chemotherapy.
SuperSibs! is a national 501©(3) organization dedicated to ensuring ongoing comfort, recognition and support to children who have brothers and sisters with cancer. SuperSibs! helps these siblings to redefine the cancer experience to use these life lessons for strength, courage and hope as they move into the future. No longer are these “shadow survivors” forgotten and alone as they battle feelings of fear, insignificance, guilt, helplessness, anger and grief. SuperSibs! does education and outreach programming and provides comfort and care services to siblings.
660 N. First Bank Drive
Palatine, IL 60067
Sibling Support Project
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.
Their mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents’ and providers’ awareness of siblings’ unique, lifelong, and ever-changing concerns through workshops, websites, and written materials.
Candleighters: The American Childhood Cancer Organization (ACCO)
The American Childhood Cancer Organization® is the largest publisher and distributor of free childhood cancer books in the country. Our books and materials are targeted at parents, young patients, siblings, educators, and caregivers. Their website has a specific page with resources for siblings: “Just for Sibs,” found under “Information,” “For Kids.”
Kids Kicking Cancer
The Iris S. and Bert L. Wolstein Kids Kicking Cancer Program, run through Rainbow Babies’ & Children’s Hospital in Cleveland, encourages young patients and survivors of cancer and blood disorders to be active and recognize the benefits of physical activity and healthy eating. The program offers a series of free athletic skills clinics in basketball, soccer, golf, tennis and swimming plus fun annual outings like bowling. Siblings are encouraged to participate.
CureSearch has a section of its website dedicated to family coping strategies, much of which focuses on sibling care. They also list resources, articles and research relevant to the emotional needs of siblings of patients.
Life With Cancer
The mission of Life with Cnacer is to enhance the quality of life of those affected by cancer by providing education, information and support. Based in Fairfax, VA, they offer programs for children with cancer and their family members, including Super Sibling Support Days, all day programs for kids with cancer and their siblings, ages 5 – 12, to learn about cancer, share feelings, and cope with changes in the family. Children participate in arts and crafts, medical play, and other “fun” activities.
American Cancer Society. “When Your Brother or Sister Has Cancer”.
CancerCare. “Helping the Sibling of the Child with Cancer”
National Cancer Institute. When Your Brother or Sister Has Cancer: A Guide for Teens and When Someone in Your Family Has Cancer.
SuperSibs! “Parent Guide”
CancerCare booklet: Helping Children When a Family Member Has Cancer
CancerCare booklet: CancerCare for Kids
National Cancer Institute: When Someone in Your Family Has Cancer
Candlelighters Childhood Cancer Foundation: Just for Siblings and Just for Kids (medical sites that can be used to explain cancer to children)
Cavallo, Jo. “Shadow Survivors: A Childhood Cancer diagnosis Often Makes Well Siblings Feel Like They’re Battling the Disease Too”. Cure; Vol. 5, No. 4, Fall 2006 (p.66).
Apel, Melanie Ann. Coping with leukemia. New York, NY: Rosen Publishing Group, 2001.
A chapter for teenage siblings and discussion of the emotional side of living with cancer.
Wozanick, Leigh A. Living with Childhood Cancer: A Practical Guide to Help Families Cope. Washington DC: American Psychological Association, 2002.
Beall-Sullivan, Christina. (2000). Hi, My Name is Jack: A Book for the Healthy Siblings of Chronically Ill Children. Bopar Books.
This is a children’s book for the healthy siblings of chronically ill, disabled or dying children. This book addresses the feelings of the healthy siblings without focusing on the ill child. This book is unique in that it is not illness specific. It is used 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.
Dodd, Michael. (2004). Oliver’s Story: For Sibs of Kids with Cancer. Candlelighters Childhood Cancer Foundation. (also available in Spanish).
Oliver’s Story is a 40 page illustrated book targeted for the 3 to 8 year old sibling of children diagnosed with cancer. Illustrated by Mike Dodd and written through the eyes of his six-year-old son Oliver, this resource focuses on the many questions that siblings have when their brother or sister is diagnosed with cancer, and offers constructive ways on how they can provide support.
Available fromCandlelighters at www.candlelighters.org.
Peterkin, Allan. (1992). What About Me? When Brothers and Sisters Get Sick. Magination Press.
Laura experiences conflicting emotions when her brother becomes seriously ill.
Includes suggestions for parents to help their well children cope with a chronically ill sibling.
Schultz, Charles M. (2002). Why, Charlie Brown, Why? A Story About What Happens When a Friend Is Very Ill. Ballantine Publishing Group.
In this timeless classic, the Peanuts gang faces the serious sickness of a good friend with all the sensitivity, caring, and warmth that is the trademark of Charles Schultz’s work. Why, Charlie Brown, Why? is a heartwarming story of a child dealing with great challenges and profound questions. When young Janice is diagnosed with leukemia, Charlie Brown looks for answers, Linus becomes her protector, Lucy doesn’t understand, Snoopy dons his ‘”World’s Greatest Surgeon” togs, and the whole gang does some soul searching. In his own inimitable style, Charles Schulz brings this touching tale to life. With charm and compassion, he tells of the effect of Janice’s illness on her family, her classmates, and, of course, her friends.
Sonnenblick, Jordan. Drums, Girls and Dangerous Pie. Ketchum. ID: DayBue Pub., 2004.
A novel for teenagers about the struggle teenagers endure when a brother or sister is diagnosed with cancer.
Contact SuperSibs (Toll Free: 866-444-7427) to obtain a copy.
Cancervive. Kids tell kids: what it’s like when their brother or sister has cancer. Los Angeles, CA: Cancervive, .
Kids who have a brother or sister with cancer share their stories and talk about how it feels to have a family member with cancer.
Hilden, Joanne, M.D., and Tobin, Daniel, M.D., with
Karen Lindsey. Shelter from the Storm: Caring for a Child with
a Life-Threatening Condition. Perseus Publishing, 2003.
Janes-Hodder, Honna and Keene, Nancy. Childhood Cancer:
A Parent’s Guide to Solid Tumor Cancers. O’Reilly &
Keene, Nancy. Childhood Leukemia: A Guide for Families,
Friends and Caregivers. O’Reilly & Associates, 2002.
Keene, Nancy and Prentice, Rachel. Your Child in the
Hospital: A Practical Guide for Parents. O’Reilly &
Shiminski-Maher, Tania; Cullen, Patsy McGuire; and
Sansalone, Maria. Childhood Brain & Spinal Cord Tumors:
A Guide for Families, Friends & Caregivers. O’Reilly &
For Children and Teens
Baker, Lynn S., M.D. You and Leukemia: A Day at a Time.
W.B. Saunders Company, 2002.
Dorfman, Elena. The C-Word: Teenagers and Their Families
Living with Cancer. NewSage Press, 1998.
Foss, Karen. The Problem with Hair: A Story for Children Who
Are Learning About Cancer. Centering Corporation, 1996.
Keene, Nancy and Romain, Trevor. Chemo, Craziness, and
Comfort: My Book About Childhood Cancer. Candlelighters
Childhood Cancer Foundation, 2002.
Krisher, Trudy. Kathy’s Hats: A Story of Hope. Albert
Whitman & Company, 1992.
Peterkin, Allan. What About Me?: When Brothers and
Sisters Get Sick. Magination Press, 1992.
Sonnenblick, Jordan. Drums, Girls, and Dangerous Pie.
Scholastic Books, 2004.
A fictional story about a sibling’s experience with
Provide support for families of children with a life long illness. We can provide certificate help (gas, food), financial, information and other services. The child must be still in 18 and under (unless the child is still in high school).
A Spark of Hope
A Spark of Hope provides financial and emotional support to children diagnosed and their families who are unable to adequately pay for the most appropriate and cutting-edge care. Their mission is to relieve the anguish endured by so many families affected financially by this terrible disease.
Emily’s Hopeful Holiday
Emily’s hopeful Holiday is an organization that assists local northeast Ohio families with paying their household bills, such as home utility bills, while a child is in treatment at Rainbow Babies and Children’s Hospital.
Leukemia and Lymphoma Society (LLS) of Cleveland
LLS is dedicated to funding blood cancer research, education and patient services. LLS offers a variety of services and programs in support of the mission to cure leukemia, lymphoma, Hodgkin’s disease and myeloma. The society also offers financial reimbursement for some medications, transportation and procedures for those in need. It also offers financial support towards the cost of co-pays for prescription drugs and/or insurance premiums through its Co-Pay Assistance Program. They award grants in the amount of $150 a year for patients in need.
23297 Commerce Park Road
Cleveland, OH 44122
The Littlest Heroes
The Littlest Heroes impacts families in Northeast Ohio by providing gift cards for fuel, meals and additional financial support to help them bridge this difficult time in their lives.
PO Box 1406 (Mail)
32000 Aurora Road (Shipments)
Solon, Ohio 44139
Prescription Financial Support
Rise Above It
Rise Above It (RAI) provides consultation and financial grants to adolescents and young adults and their families in their fight against cancer. Through financial assistance and personal attention, RAI strives to instill a positive attitude within its recipients, thus allowing them to each day with faith and a fighting spirit
PO Box 40054
Bay Village, Ohio 44140
Ronald McDonald House of Cleveland
The RMD House of Celveland offers a place to call home at little or not cost so families can access the best health care, regardless of their location. Families may stay together, which can help their children heal faster and cope better.
10415 Euclid Ave.
Cleveland, Ohio 44106
Cancer Financial Assistance Coalition
CancerCare provides free professional support services to anyone affected by cancer (people with cancer, caregivers, children, loved ones, and the bereaved). CancerCare programs include counseling and support groups, education, financial assistance, and practical help. Counseling is provided by oncology social workers and is available on the telephone and face-to-face (available at offices in New York City, Long Island, New Jersey, and Connecticut). Support groups are offered online, via telephone, and in face-to-face groups. Connect® Education Workshops are available via the telephone or via live streaming through the Internet. In the workshops, leading experts in oncology provide the most current information. CancerCare also provides free publications, some in Spanish. Limited grants are available to eligible families for cancer-related costs like transportation and childcare. A section of the CancerCare Web site is available in Spanish.
Cancer Treatment (includes side effects, late effects), Children/Young Adults, Health Insurance/Co-Payments, Lodging (during treatment), Medication, Practical Needs (mortgage, rent, food, transportation)
275 Seventh Avenue
New York, NY 10001
212-712-4673 (Responds to calls in English and Spanish)
1-800-813-4673 (1-800-813-HOPE) (Responds to calls in English and Spanish)
CancerCare Co-Payment Assistance Foundation
The CancerCare Co-Payment Assistance Foundation is a not-for-profit organization established in 2007 to address the needs of individuals who cannot afford their insurance co-payments to cover the cost of medications for treating cancer. The Foundation is proud to be affiliated with CancerCare, a national not-for-profit organization that has provided free professional support services including counseling, education, financial assistance and practical help to people with cancer and their loved ones since 1944. The Foundation offers assistance for the following conditions: breast cancer, colorectal cancer, gastric cancer, glioblastoma, non-small cell lung cancer, pancreatic cancer, prostate cancer and renal cell cancer.
Chronic Disease Fund
Chronic Disease Fund (CDF) is an independent, non-profit 501(c)3 organization established in 2003. CDF provides financial assistance to underinsured patients diagnosed with chronic or life-altering disease that requires the use of specialty therapeutics. CDF offers assistance for the following cancer-related diagnoses: breast cancer, chronic iron overload, colorectal cancer, liver cancer, multiple myeloma, myelodysplastic syndrome, non-small lung cancer, pancreatic cancer.
The HealthWell Foundation is an independent, non-profit organization that provides financial assistance to underinsured patients living with chronic or life-threatening diseases such as cancer, asthma, and autoimmune disorders. The Foundation helps eligible individuals afford their out-of-pocket costs for prescription drug copayments, coinsurance, deductibles and healthcare premiums. The Foundation offers assistance for the following oncology conditions: breast cancer, carcinoid tumors and related symptoms, chemotherapy induced anemia/neutropenia, colorectal cancer, cutaneous T-cell lymphoma, glioblastoma multiforme/anaplastic astrocytoma, non-Hodgkin’s lymphoma and Wilms’ Tumor. Patients may apply online or by calling 1-800-675-8416. For more information, see the Patient Brochure.
The Leukemia & Lymphoma Society’s Co-Pay Assistance Program
Helps patients meet their health insurance, Medicare Part B or D, Medicare Supplement, or Medicare Advantage premiums or co-payment obligations. Household income must be at or within 500% of the U.S. federal poverty guidelines for people living in the United States and Puerto Rico. Check website for a list of covered diagnoses. To apply or obtain more information about the Co-Pay Assistance Program, please call 1-877-557-2672 to speak with a Co-Pay Specialist who will provide personalized service through the application process. You may also email your request for a Co-Pay Specialist to contact you regarding the program at firstname.lastname@example.org.
Lymphoma Research Foundation
New York: 1-800-235-6848
Los Angeles: 1-800-500-9976
The Lymphoma Research Foundation (LRF) is the nation’s largest lymphoma-focused voluntary health organization devoted exclusively to funding lymphoma research and providing patients and health care professionals with critical information on the disease. LRF’s mission is to eradicate lymphoma and serve those touched by this disease. LRF offers a limited financial assistance program for uninsured and underinsured lymphoma patients undergoing treatment. LRF may be able to pay a portion of patients’ medical bills to the doctor or hospital. Offers a free helpline and information service for referrals to financial assistance programs, legal and insurance help.
National Marrow Donor Program
The NMDP Office of Patient Advocacy (OPA) is available to help patients and their families from diagnosis through survivorship with information and support services related to blood and marrow transplant. Personal telephone counseling and education, resource materials and patient financial assistance are available. OPA case managers can provide support related to insurance coverage issues and discuss potential financial resources. To contact an OPA case manager call 1-888-999-6743 or email email@example.com . The OPA offers financial aid programs (Search Assistance Funds, Transplant Support Assistance Funds, AirCares through Northwest Airlines) to help patients in need of a bone marrow or cord blood transplant. Patients are only eligible if they are using the NMDP Registry for their donor or cord blood. Eligible patients must apply through their NMDP affiliated transplant center—applications are not accepted directly from patients. Additonally, OPA offers the following resources: Mapping the Maze: A Patient’s Guide to Blood Stem Cell Transplant, and the financial fact sheets, Your Finance and Insurance Matters and Your Rights and Benefits
National Organization for Rare Diseases (NORD)
1-800-999-6673 (voicemail only)
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD offers a Rare Disease Database, which provides reports in patient-friendly language on approximately 1,200 rare diseases, including several rare cancers. NORD also provides an RN and a genetic counselor who are available to answer questions at RN@rarediseases.org firstname.lastname@example.org .
Patient Access Network Foundation
PAN is an independent, not-for-profit organization established in 2004. Through a simple application process, PAN provides co-payment assistance to patients who have insurance, but lack the means to pay for out-of-pocket costs for their medications or infusions. PAN’s professional, compassionate case managers help patients and advocates throughout the United States and U.S. territories access needed treatments for 21 disease state funds, including the following oncology and related illnesses: breast cancer, colorectal cancer, cutaneous T-Cell Lymphoma (CTCL), non-small cell lung cancer, multiple myeloma, myelodysplastic syndrome (MDS), non-Hodgkins lymphoma, oncology cytoprotection, pancreatic cancer, and anemia. PAN provides hope to patients and their families and helps ensure that patients can consistently follow prescribed treatment plans.
The Sarcoma Alliance strives to extend and improve the lives of sarcoma patients through accurate diagnosis, improved access to care, education, and support. The Alliance’s Suzanne R. Leider Memorial Assistance Fund program helps sarcoma patients with costs associated with obtaining a second opinion from sarcoma specialists across the United States. Eligible expenses include travel, hotel, meals, professional fees and testing. For more information contact:
1-415-381-7236 or http://www.sarcomaalliance.org/assistance.html
The National Children’s Cancer Society (NCCS)
The mission of The National Children’s Cancer Society is to improve the quality of life for children with cancer by promoting children’s health through financial and in-kind assistance, advocacy, support services, and education.
One South Memorial Drive
St. Louis, MO 63102
Social Security Disability Benefits
SSI is a federally funded program that provides monthly payments to the elderly and to blind and disabled children and adults if medical and financial eligibility criteria are met. If a child is eligible he/she also automatically qualifies for Medical Assistance (MA) to help pay for medical expenses. You can apply at your local Social Security Administration office, by phone at 1-800-772-1213 or online.
Co-Pay Relief Program (CPR) Patient Advocate Foundation Program
The Patient Advocate Foundation’s Co-Pay Relief (CPR) program provides co-payment assistance to insured Americans who financially and medically qualify. CPR provides direct financial assistance to qualified patients by offering co-payment assistance for pharmaceutical products (chemotherapy, injections, and pharmacy prescriptions). CPR call counselors work directly with the patient, as well as with the provider of care, to obtain necessary medical, insurance, and income information to advance the application process. CPR assists patients diagnosed with certain conditions; contact the program to find out if you are eligible for assistance. Information on the Web site is also available in Spanish.
421 Butler Farm Road
757-952-0118 (Responds to calls in English only)
1-866-512-3861 (Responds to calls in English only)
Frequently Asked Questions
Education Law Center
The Education Law Center provides free legal assistance to parents, students and advocates on education law matters, and advises parents of their rights to special services under the law. The Center also publishes a free guide for parents called Family and Medical Leave Act (FMLA) FMLA mandates that covered employers must grant eligible employees up to a total of 12 work weeks of unpaid leave during any 12-month period to care for an immediate family member (spouse, child or parent) with a serious health condition. The document “The Right to Special Education in Pennsylvania: A Guide for Parents and Advocates” is available through this organization.
The Ulman Cancer Fund for Young Adults (UCF)
The mission of the Ulman Cancer Fund for Young Adults (UCF) is to enhance lives by supporting, educating, and connecting young adults (ages 15 to 40), and their loved ones, affected by cancer. UCF offers remote (via telephone) and on-site (in Maryland) patient navigation programs that provide access to support resources and treatment information, and tips on effective communication with the patient’s health care team. UCF provides support groups in Maryland and Washington, DC that are facilitated by professional social workers. Participants in the support groups include cancer patients, survivors, and spouses, friends, and children of people with cancer. UCF has a Peer Mentor Network that connects survivors, parents, and other young adults affected by cancer with one another for peer support and information exchange. UCF has a National College Scholarship Program and offers competitive scholarship awards. Applications for scholarships are available on the UCF Web site.
10440 Little Patuxent Parkway
Columbia, MD 21044
410-964-0202 (Responds to calls in English only)
1-888-393-3863 (1-888-393-FUND) (Responds to calls in English only)
Foundation for Children with Cancer
The mission of Foundation for Children with Cancer is to provide financial assistance for the families of children with pediatric cancer. By providing tangible and direct financial support, such as mortgage payments, insurance premiums and utility bills, families are given a greater opportunity to focus on their child’s treatment and recovery.
11327 Gravois Road, Suite 202
St. Louis, MO 63126
The Max Foundation
The Max Foundation is a US-based international non-profit dedicated to improving the lives of people living with blood cancer and rare cancers worldwide. The organization focuses attention on assisting disadvantaged populations in developing countries and elsewhere, including the US. The Max Foundation’s International Patient Helpline provides free services of advocacy, emotional support, informational referrals and help finding emergency funding. Through a highly dedicated team of US-based and local advocates based in targeted countries, families receive personalized support services. Each year The Max Foundation provides free services to over 16,000 families in more than 100 countries.
If you still have questions please contact us at email@example.com
What do I say to my child’s teacher?
- You have a Legal Right* to request assistance from your child’s school.
- When a child is diagnosed with cancer he/she is eligible for special education services (IDEA*).
- The type of services will depend on your child’s needs.
- Again, make sure that your school is aware that your child has cancer.
- Request a meeting with all the teachers and counselors working with your child.
- If you can, bring your spouse, or other relative to provide you with support as this can be a very emotional experience.
- Let the school know that your child may be in school part-time because of his medical condition. (They should be aware of this situation.)
- Don’t worry, under +Section 504 of the Civil Rights Law. No child can be discriminated against due to their medical diagnoses. The school is obligated to provide your child with assistance.
- A tutor to work with your child at home
- Extra set of text books if needed
- Homework assignments sent home or to the hospital
- Extra time to complete homework assignments. (Make sure you and your child talk to the teacher about homework. The child needs to understand that he/she is still responsible to try to get work done, within reason. This is good for their mental health as well.)
- Encourage your child to attend school whenever they can. This is really important for your child’s emotional strength. It is important to continue to stay in contact with their friends. Children and teenagers tend to feel very isolated and alone when going through cancer treatment.
The Link below is an example of a 504 plan for student with medical issues. You can use the format for your child. Take a copy of this plan with you to your meeting.
The Link below provides a description of IDEA and Section 504.
If you have any questions about your legal rights contact the Ohio Coalition for the Education of Children with Disabilities (OCECD).
Ohio Coalition for the Education of Children with Disabilities (OCECD)
The Ohio Coalition for the Education of Children with Disabilities (OCECD) is a statewide, nonprofit organization that serves families of infants, toddlers, children and youth with disabilities in Ohio, and agencies who provide services to them. OCECD works through the coalition efforts of over 40 parent and professional disability organizations which comprise the Coalition.
Established in 1972 and staffed primarily by parents of children and adults with disabilities, persons with disabilities, and education professionals, the Coalition mission is to ensure that every Ohio child with special needs receives a free, appropriate, public education in the least restrictive environment to enable that child to reach his/her highest potential. Throughout Ohio, the Coalition’s services reach families of children and youth, birth through twenty-six, with all disabilities.
OCECD’s programs help parents become informed and effective representatives for their children in all educational settings. In addition, youth are assisted to advocate for themselves. Through knowledge about laws, resources, rights and responsibilities, families are better able to work with agencies to ensure that appropriate services are received for the benefit of their sons and daughters. Below is a link to OCECD’s Constitution, Bylaws,
Regional Map, Annual Report and Special Education Profile.
Ohio Coalition for the Education of Children with Disabilities works with parents to help get them the assistance they need. If you need one-to-one assistance, call 1 (800) 374-2806 ext. 20 or visit www.ocecd.org.
Can my child with cancer attend school?
One of the challenges families face when their son or daughter has been diagnosed with Cancer is deciding how to maintain some type of normalcy. Attending school while in treatment for cancer is one way to maintain a sense of normalcy. However, determining whether your son or daughter can return to school is a decision made between the family and pediatric oncology team.
Below is a brief description of steps to take if your child can return to school. It is important to be aware that your child has legal rights to an educational program that will meet their needs due to their diagnoses of cancer. The Laws that protect your child’s right to an education is Individuals with Disability Act (IDEA) and the Civil Rights Act: Section 504.
Some suggestions for families once they learn their child has cancer:
- Contact your school nurse, guidance counselor, or teacher.
- Give your school contact a letter from your pediatric oncologist that states your child’s diagnoses of cancer.
- Make sure the letter includes information about what your child can and cannot do during the school day.
- The letter is proof that your child may need some extra help in school.
- It is important that you find out from your child’s oncologist whether your child is able to attend school and if so, how often.
(For example: Will your child be receiving out-patient treatment or in-patient treatment?)
- If he/she is receiving in-patient treatment, then your child will receive special education assistance from the teacher working in the Pediatric Oncology Department.
- If he/she is receiving out-patient treatment, then it is likely your child may need some extra educational support from your child’s school.
- It is not uncommon for children undergoing cancer treatment to receive both in-patient and out-patient medical treatment at some point. One should always remember that each child is unique.
+Section 504 of the Civil Rights Act: ensures that your child cannot be discriminated against due to their diagnoses of Cancer. What this means is that your child’s illness may limit their ability to attend school on a regular basis and may need more time to finish homework assignments. Your child may need a tutor to visit them at home while they are recovering from chemotherapy treatments or surgery.
Note: That Section 504 is available for College Aged Students are well!!! However, the nature of the modifications to the student’s educational program will be between the student and the Student’s with Disabilities Services Department at your college or university.
Ohio Board of Regents
Information on how to seek out and apply for college scholarships.
Cancer Survivors’ Fund Scholarship
Cancer Survivors’ Fund is a non-profit organization chartered exclusively for charitable purposes; specifically to provide college scholarships and prosthetics for the benefit of persons diagnosed with cancer, receiving treatment for cancer or in remission to give them a new purpose and meaning in life.
Heath Resource Center
The George Washington University
HEATH Resource Center
2134 G Street, N.W.
Washington, D.C. 20052-0001
An online resource center for post-secondary students with disabilities. Provides up-to-date information about federal financial aid programs.
National Collegiate Cancer Foundation Scholarship
The National Collegiate Cancer Foundation’s mission is to provide services and support to young adults who have been diagnosed with cancer. Our goal is to help these survivors and their families establish a “Will Win” attitude in their fight.
NCCF is committed to providing need-based financial support to young adult survivors who are pursuing higher education throughout their treatment and beyond. Furthermore, the Foundation promotes awareness and prevention of cancer within the young adult community.
Scholarships for Survivors of Childhood Cancer
This web site is for parents, friends, and families of children who have or had childhood cancer. This resource center was created by and for people who know young people who are recovering from cancer. Most of the contributors to this site are members of the ACOR pediatric cancer mailing lists, especially ped-onc, ped-onc-survivors, and ALL-kids. They provide a list of scholarships: Click on ‘Resources’ and then ‘Scholarships
Emily’s Rainbow Run
The Steven G Cancer Research Fund
The Steven G. AYA Cancer Research Fund is anon-profit organization. Our purpose is to raise awareness about AYA (adolescent and young adult) cancer and the need for research to find better ways to treat and cure our young people!
2368 Georgia Drive
Westlake, Ohio 44145
Rise Above It
Rise Above It (RAI) exists to help change this disturbing trend: The number of young adult cancer patients is growing at an alarming rate. Each year, nearly 70,000 adolescents and young adults, ages 15 to 39, are diagnosed with cancer. In contrast to patients both younger and older, survival rates for young adults have not improved since the early 1970s.
P.O. Box 40054
Bay Village, OH 44140
Ryan Waldheger Research Memorial
The Ryan Waldheger Research memorial improving cancer care for adolescents and young adults through research that bridges the gap between pediatric and adult cancer care programs.
1991 Crocker Road, Suite 550
Cleveland, OH 44145
CureSearch for Children’s Cancer funds the Children’s Oncology Group, the world’s largest children’s cancer research collaborative. With more than 210 member hospitals and 6,500 medical professionals, the Children’s Oncology Group provides global expertise at your local hospital. Local events include the curesearch walk and kickball games www.kick-it.org.
Fighting to improve the lives of people affected by cancer.
Raising more funds than any organization outside the US Government and FREE HAIRCUTS! What more needs to be said! St. Baldrick’s began as a casual conversation between friends and has exploded into the world’s biggest volunteer-driven fundraising program for childhood cancer! Since inception, events have taken place in 18 countries and 48 US states, raising over $100 million, and shaving more than 71,000 heads. Shaving heads and raising awareness and funds. Local Cleveland events take place on St. Patrick’s Day.
Alex’s Lemonade Stand
In 2000, a 4 year old cancer patient named Alexandra “Alex” Scott announced a seemingly simple idea -she was holding a lemonade stand to raise money to help “her doctors” find a cure for kids with cancer. The idea was put into action by Alex and her older brother, Patrick, when they set up the first “Alex’s Lemonade Stand for Childhood Cancer” on their front lawn in July of 2000. The simple concept of “fighting childhood cancer, one cup at a time” has allowed people who would not usually participate in fundraising, especially children, to organize and raise money for childhood cancer. Adults and children have been inspired by Alex’s giving spirit – since 2004 there have been over 8000 Alex’s Lemonade Stands held across the country.
Hope Street Kids
Hope Street Kids is a children’s initiative of the Prevent Cancer Foundation. This program was founded by Congresswoman Deborah Pryce and Randy Walker, in memory of their nine-year-old daughter, Caroline Pryce Walker, who lost a valiant battle against neuroblastoma on September 4, 1999. Under the auspices of one of the nations’ leading cancer research and education organizations, the Prevent Cancer Foundation, Hope Street Kids has been shaped by Caroline’s idea to continue the fight she began. We believe we can truly help families of children with cancer, fund pioneering research, find effective cures and have an effect on the health and well-being of all children in the United States.
A TIME Magazine Best 50 Website for 2007, the I’m Too Young For This! Cancer Foundation, iy, is a pioneering national, survivor-led advocacy, support and research organization working exclusively on behalf of survivors and care providers under the age of 40.
The Hope on Wheels Tour
The Hope on Wheels Tour is the united effort of Hyundai dealers across the country to raise awareness about childhood cancer and celebrate the lives of the courageous children battling the disease. In 2010, the Hope on Wheels Tour traveled to 44 children’s hospitals across the country and donated more than $2 million to support further training and research for doctors involved in childhood cancer research. Hyundai Hope on Wheels designates the medical professionals supported by these donations as Hyundai Scholars.
Solving Kids Cancer
SKC is dedicated to facilitating the development of therapies to improve survivorship of the deadliest childhood cancers through an innovative and aggressively funded model. Our dream is to extend life for children with the deadliest forms of pediatric cancer today while making survivorship possible for all children by 2015. Although SKC is a nonprofit organization, we operate as a therapeutic development enterprise for pediatric cancer. SKC is instrumentally involved in the conception, design, and management of our funded projects. SKC manages every stage of the projects we support, including tying grant milestones to actual deliverables. SKC directs and monitors collaboration between all stakeholders to ensure transparent and effective results.
Raising awareness for childhood cancer with many events nationwide. Raises funds for childhood cancer research in search of cures and advancements in chemotherapy.
Coach’s and Teachers Curing Childhood Cancer
Instead of buying your coach or teacher a gift at the end of the year, donate the money to Curing Kids’ Cancer. The money goes to childhood cancer research and in return, the coach or teacher receives an original gift, a certificate and the great feeling of helping kids kick cancer. Money is granted to pediatric cancer research.
Just getting into the fundraising arena Team Unite also does something equally important; they take action in the form of letters and visiting during Reach the Day to pressure our government and other stakeholders to provide funding for childhood cancer. This is truly an important group, and one we whole-heartedly support.
The Isaac’s Journey… “Where HOPE begins” foundation was launched in January, 2008. The mission of the Isaac’s Journey… “Where HOPE begins” Foundation is to educate and raise awareness of Childhood Cancer and help fund research projects through grants from donations collected. They HOPE to change cure rates for our future generation as every advancement in curing childhood cancer has come through research.
its 4 the kids
Its 4 the kids is a team of artists who are passionate about making a difference in the lives of children. Through our passion and our love for these “Cancer Kids,” we are inspired to create beautiful pieces of artwork to raise money for the human side of cancer. There are many avenues to raise money for research but Michelle and the other artists involved hearts have lead them to reach out and provide in places few are reaching toward.
The Pablove Foundation
The mission of The Pablove Foundation is to fund pediatric cancer research and advances in treatment, educate and empower cancer families, and improve the quality of life for children living with cancer through hospital play, music and arts programs.
National Grace Foundation
“I have over 17 years of experience in admissions, financial aid and academic advising at top colleges and universities in the country. I understand how the college admission and financial aid process can be very confusing, intimidating and down right frustrating. Families pay upwards of $4,000 to private counselors to help navigate through the college admissions/financial aid maze. I know first hand all of the out of pocket expenses that families incur while their children are being treated, and spending thousands of dollars on these services is out of the question for many families. That’s where the National GRACE Foundation comes in.”
On July 30, 2007, my entire world changed. Five tumors were discovered on the kidneys of my ten-month old son Austin, and two days later he was officially diagnosed with bilateral Wilms tumor, a cancer that strikes a mere twenty children nationwide each year. And suddenly, my husband Mark and I, and Austin’s then three-and-a-half year old brother Braedan found ourselves plunged deep into the world of childhood cancer.
In those first eight months, Austin had twenty-four weeks of chemo, fifty-some nights at Rainbow and four abdominal surgeries, including one that removed a tumor that weighed nearly six pounds and measured in at a whopping 10 by 15 by 21 centimeters in size. Now if you’re like me, you may not know the metric system all that well, but I can tell you that is very very large. Especially in the body of a boy two weeks shy of his first birthday.
But by age 1 ½, Austin was cancer-free. He had lost his entire right kidney and 40% of his left, but it was functioning fine and he was a mostly healthy, totally happy and remarkably normal toddler. Mark and I, and Braedan and Austin, all patted ourselves on the backs and went on our merry way, believing that we had made it through our life’s hardest thing.
But we hadn’t.
In the winter of 2009, shortly after Austin turned three, another tumor was discovered on what remained of his left kidney. And if you think it’s hard to hear that your child has cancer the first time, it is immeasurably harder the second. Sure, you may not be as shocked, you knew this could happen after all, and you may not be as dumbfounded because you’ve been there and you know the ropes. But recurrence means a cancer is tricky, it’s smart and sneaky, little cells hiding in there, biding their time, waiting until you let your guard down just a bit, til you dare to pat yourselves on the back and believe you’ve done your life’s hardest thing. And then, bam, they’re baaaccck.
Treatment, this time around, was extra complicated. You see, in Austin’s case, we were always walking a tight rope between trying to rid his body of cancer as completely as possible while not doing undue harm to that precious little kidney. This was never easy. And it was something that kept us, Austin’s parents, and the incomparable Dr. Jeff Auletta, Austin’s oncologist, up at night. After all, we were all equally charged with his care.
So we worked together, as partners trying to map a course in uncharted territory. There are few if any kids in the country who’ve had quite what Austin’s had, which makes figuring out a treatment plan a little bit difficult. But we settled on one we all felt comfortable with, one we hoped would rid his body of cancer without destroying that kidney.
And it did rid his body of cancer. By the spring of 2010, there was no evidence of disease inside of our sweet boy. But it was also destroying that kidney, and Austin was then in stage 4 renal failure. Which meant, that as we finally finished one journey, we seemed just about to begin another: four hour stretches of hemodialysis every other day for two years. Followed by a kidney transplant.
We had toured the dialysis clinic, we were about to schedule the surgery to remove the kidney and place the necessary catheters when Mark, with Dr Auletta’s blessing, suggested that we take the summer off, give everyone a break — Austin, Braedan, us – let us rest for a moment, and just see what happened. And what happened was miraculous.
Every week when we went in for labs, Austin’s kidney function improved. A little bit here and a little more there. Numbers that were supposed to be high, went up, numbers that were supposed be low, went down. We decided one more time to keep that kidney and see just how long it could last.
In May of 2012, Austin hit a golden milestone when he was declared two-years cancer-free. In September of this year, he reached another milestone when he started kindergarten. He is still in stage 3 renal failure and will one day need a kidney transplant, for now, that little half-organ just keeps chugging along..
And this boy keeps chugging along too: spunky and clever, both brave and shy, extraordinary in so many ways, and yet so very very ordinary.