Archive for RESOURCES & ASSISTANCE

Wish Fulfillment Organizations for People With Cancer

You-Dont-Need-Magic-To-Make-Wishes-Come-True

 

Some wishes can come true.  Just ask anyone who has worked with one of the organizations listed below as they work to make wishes come true for people with cancer and other life-threatening illnesses.  Some work specifically to grant wishes of children; others with adults; and still others for families who have a parent battling cancer.  The various organizations have differing eligibility requirements and limitations regarding the types of wishes they grant.  Each organizaion is amazing in their own way.

Please note:  To find out more information on getting a wish granted, please contact each organization directly.  If you know of other organizations that offer wish fulfillment, please email me at robyn@cancerhawk.com and I’ll post their information.

 

3 Little Birds 4 Life  This nonprofit grants wishes to young adults with cancer ages 18-40.  Wishes that include travel are restricted within the continental United States.

Believe in Tomorrow Children’s Foundation  Best known for offering parents temporary housing near the hospitals where their children are being treated, this foundation also provides funding for various adventures for children with advanced diseases.

Children’s Wish Foundation International  This Atlanta-based nonprofit grants wishes to children with advanced illness, including advanced cancer, who are younger than 18 years old. Children who are “too young to make a wish that is truly their own” can participate in the organization’s Young Minds program, which provides children younger than three years old with an assortment of gifts to entertain and provide comfort.

The Clayton Dabney Foundation for Kids with Cancer  Through the Medicine of the Heart program, this foundation anonymously grants wishes to children with advanced cancer who come from financially needy families. A health care provider, such as a doctor or nurse, must nominate the child.

Compassion Partners  This Disney program provides children and adults free passes to several theme parks in Florida, including Disney theme parks, Sea World, Universal Studios Orlando, and Busch Gardens. Passes are available by calling 407-396-6065 or 407-828-2298.

Deliver the Dream  This organization provides families living with an advanced illness whether the illness involves a child or a parent the chance to relax, enjoy time together, and forge bonds with others during a three-day retreat. Health care providers or one of Deliver the Dream’s partnering organizations are responsible for recruiting the family for participation.

The Dream Factory  The Dream Factory grants wishes to critically and chronically ill children who are between three and 18 years old. Parents, guardians, physicians, other caregivers, and children with advanced diseases can make referrals to begin the wish-granting process.

Dream Foundation  The Dream Foundation fulfills the wishes of adults suffering from advanced illnesses. The foundation seeks to help adults find peace and closure with the realization of a final wish. Dream Foundation grants requests to adults older than 18 years old whose life expectancy, confirmed by their physicians, is one year or less. They must also confirm that they have limited resources.

Give Kids the World  The Give Kids the World Village is a 70-acre resort in Central Florida that offers accommodation, entertainment, and other attractions for children with life-threatening illnesses. The charity provides children between the ages of three and 18 and their families free, one-week vacations to help create long-lasting memories. A child must be sponsored by one of more than 250 wish-granting organizations in the country or a children’s hospital affiliated with Give Kids the World.

Granted Wish Foundation  The Granted Wish Foundation fulfills wishes for “disabled, disadvantaged, and deserving individuals and families” and works with people of all ages. In addition, the foundation has a special program that provides luxury air transportation for children with advanced illness and their families to travel to receive life-saving treatment.

Hope Kids  This charity hosts regular events and activities (a “never-ending” wish) that help restore hope for the future. Hope Kids also provides a support community for children with advanced illnesses and their families.

The Jack & Jill Late Stage Cancer Foundation The J&J Late Stage Cancer Foundation is a national resource providing WOW! experiences for children and families who have a Mom or Dad with late stage, limited life expectancy cancer.

Jason’s Dream for Kids  Jason’s Dreams for Kids grants wishes to children diagnosed with a progressive, degenerative, or malignant condition. The organization relies on medical professionals and parents for referrals and determines medical eligibility with the help of the treating physician.

Kids Wish Network  The Kids Wish Network grants wishes for children who are between three and18 years old. The organization’s “Our Hero” program also provides wishes for children who have overcome life-altering circumstances and endured great pain and suffering. Anyone can refer a child, including a family member, friend, nurse, doctor, or social worker.

Make-a-Wish Foundation  The nation’s largest wish-granting organization, Make-a-Wish fulfills the wishes of children between two and a half and 18 years old with life-threatening medical conditions, aiming to “enrich the human experience with hope, strength, and joy.” The organization accepts referrals from health care professionals and parents, and children can even nominate themselves. After evaluating medical eligibility, a team of volunteers meets with the child to help identify the child’s “true wish.”

Making Memories Breast Cancer Foundation  Making Memories grants wishes for patients with metastatic breast cancer, while raising awareness about the disease. People with advanced breast cancer or their friends and family members can submit wish requests.

The Marty Lyons Foundation Founded by professional football player Marty Lyons after serving as a surrogate father of a three-year-old boy with a life-threatening illness, the foundation helps grant wishes for children with advanced illnesses.

Memories of Love  This organization provides children who have parents with advanced illness with a chance to form long-lasting memories by going on vacation with their entire family. Families are sent on a five-day, all-expense-paid vacation to Orlando, Florida. A physician, health care provider, or care organization must identify and nominate a parent who has an advanced illness.

Never Too Late  This organization helps make wishes and dreams come true for people age 65 and older with advanced illness, aiming to honor the lives they have lived. The organization requests some financial support from family members to fulfill wish requests.

Nicki Leach Foundation  This foundation provides financial assistance to teenagers and adults between 16 and 25 years old who have advanced cancer. The foundation’s clients often use this assistance to pay for specific needs or activities that they may not be able to afford, such as clothing, college, a cell phone, or bills. The applicant’s oncologist must confirm diagnosis.

Operation Liftoff  Operation Liftoff provides children with advanced illness three types of trips: “dream trips” for children and their families, “care trips” for medical treatment in other regions, and “group trips” to help teenagers with advanced illnesses leave the hospital and bond with peers. Parents and caregivers complete a form to request a trip.

The Rainbow Connection  This organization helps grant wishes to children from Michigan facing an advanced illness. To qualify, children must be between two and a half and 18 years old, live in Michigan, be diagnosed with an advanced illness, and have the diagnosis verified by a physician. In addition, they must not have received a wish fulfillment from any other organization. Medical professionals, parents or guardians, and children may submit wish requests.

Second Wind Dreams  This international fulfillment organization works to enhance the life of those living in elder care communities such as nursing, assisted living, and hospice facilities by granting wishes. The organization grants relationship-based dreams, needs-based dreams, lifelong dreams, and “I don’t want to grow up” dreams, among others.

A Special Wish Foundation  This foundation grants wishes for infants, children, and young adults younger than 21 years old who have been diagnosed with an advanced illness. Wishes fall into three categories, including “a special gift,” “a special place,” or “a special hero.”

Starlight Foundation  This foundation provides entertainment, education and family activities for seriously ill children and their families. Starlight Wishes provide a dream-come-true experience to seriously ill or injured children ages 4 to 18.

Sunshine Foundation  This foundation is committed to fulfilling the dreams of children three to 18 years old who have advanced cancer or special needs and those who have faced abuse.

United Special Sportsman Alliance  This wish-granting organization specializes in providing children and adults with disabilities or advanced illness an outdoor adventure of their dreams. Trips include hunting, fishing, water sports, and other activities.

The Warrior’s Wish Foundation  This charity grants wishes for U.S. military veterans with advanced illness and their families. Gifts range from hearing aids and scooter chairs to family vacations and trips to attend reunions. The application requires a current photograph, a description of the wish, and an explanation of why it’s meaningful.

Wishing Star  This charity grants wishes to children with life-threatening illnesses who are between three and 21 years old and live in Eastern and Central Washington and Idaho. Children do not have to be terminally ill to qualify.

Wish Upon A Star  This  non profit, law enforcement effort is designed to grant the wishes of children ages 3-18 years old living in California who are afflicted with high-risk and life-threatening illnesses.

Wishing Well Foundation USA  This New Orleans-based organization is committed to granting wishes for children with advanced illness. Children younger than 18 years old are eligible to apply.

 

(Source:  Resources listed above were found on Cancer.netDuke Cancer CenterPatient Resource & Stupid Cancer)

 

MORE Books for Children & Families Living with Cancer

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I am amazed how many books have been written to help families deal with a diagnosis of cancer.  Below is yet another post on helpful books written by Bonnie Coberly, Certified Health Counselor (CHC) at Natural Horizons Wellness Centers. Bonnie helps individuals to reach their wellness goals through smart and healthy dietary choices. You can follow Bonnie Coberly on Google+.  

 

It’s a well-known fact that if you have a book and a lap, most children will expect you to read them a story. While reading is usually said to be a calm and joyful experience, topics like cancer may not seem to follow that same thread.

Here are some suggestions of books for children and families living with cancer that prove to not only be helpful, but can also be entertaining and uplifting.

*Note: All of the following books can be found on Amazon.com.

Children’s Books:

The Boy of Steel: A Baseball Dream Come True by Ray Negron – “Young Michael Steel loves to watch the New York Yankees on TV—from his hospital bed. Michael has brain cancer. But when Yankee second baseman Robinson Cano visits Michael in the hospital, Michael embarks on an unexpected and wonderful journey when he becomes a Yankee batboy for a day. It’s his baseball dream come true!”

When Someone You Love Has Cancer: A Guide to Help Kids Cope by Alaric Lewis

Taking Cancer to School (Special Kids in School Series) by Kim Gosselin – A great book for cancer patients who are school-aged to take back to school with them or have their teacher read to their classmates. Provides learning for classmates and encourages empathy and understanding.

H is for Hair Fairy: An Alphabet of Encouragement and Insight for Kids (and Kids at Heart!) with Cancer by Kim Martin – “An alphabet book with a mission, this 32-page picture book will inspire, comfort, educate and encourage children being treated for cancer. Using colorful, warm, humorous illustrations and verse, the author employs the alphabet to feature different aspects of coping with cancer treatment.”

Imagine a Rainbow: A Child’s Guide for Soothing Pain by Brenda Miles – “Through a series of beautiful illustrations that engage all of the senses, each accompanied by a verse couplet, this book asks the child to imagine several things to cope with pain. Some are calming, some are delighting, some are empowering, some are inspirational.”

Mom Has Cancer! (Let’s Talk about It) by Jennifer Moore-Mallinos – “This sensitively written book encourages preschool-age and early-grades children to explore the possibilities of a parent with cancer.”

The Famous Hat by Kate Gaynor – “This book has been designed to help children with leukemia (or other forms of cancer) to prepare for treatment, namely chemotherapy, and a stay in hospital. Treatment for childhood cancer can be very difficult to cope with, especially for very young children. The lengthy stay in hospital, having to contend with drips, tubes and injections is difficult enough without the possibility of hair loss for children to face. However, this book helps children to see the experience of a child that they can easily relate to.”

For Parents:

When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy S. Harpham – “When A Parent Has Cancer is a book for families written from the heart of experience. A mother, physician, and cancer survivor, Dr. Wendy Harpham offers clear, direct, and sympathetic advice for parents challenged with the task of raising normal, healthy children while they struggle with a potentially life–threatening disease.”

What Is Cancer Anyway?: Explaining Cancer to Children of All Ages by Karen Carney – “What IS Cancer, Anyway? Explaining Cancer to Children of All Ages is one of the books in the Barklay and Eve Children’s Book Series. This book provides basic information that is essential when someone in the family has cancer and does so in a calm, clear, reassuring manner that children and adults will appreciate.”

Cancer in the Family: Helping Children Cope with a Parent’s Illness by Sue Heiney, Joan Hermann, Katherine Bruss and Joy Fincannon – “Outlining valuable steps necessary to help children understand what happens when a parent has been diagnosed with cancer, this guide provides “hands-on-tools” to help those affected by cancer—as well as their loved ones—face many of the dilemmas that come with the disease.”

For Siblings:

What about Me?: When Brothers and Sisters Get Sick by Allan Peterkin – “A young girl attempts to cope with her brother’s being ill.”

Authored by Cancer Patients:

Chemo Girl: Saving the World One Treatment at a Time by Christina Richmond – “Chemo Girl is the fictional tale of a superhero created by Christina Richmond, who was diagnosed with Rhabdomyosarcoma, a rare type of muscle cancer, when she was in the seventh grade.”

I’m A Superhero by Daxton Wilde – “I’m A Superhero reaches beyond borders and cultures, helping children and their families to be brave, helping parents explain cancer to their young children, and helping families cope with one of life’s most difficult situations through love and humor.”

Do you have any cancer related books that you have found helpful for your family or children?  If so, please share them with us.  Knowledge is power…. let’s share the power!

 

Books Written For Children When an Adult Family Member Has Cancer

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I recently came across a helpful list of books written to help children when an adult family member has cancer.  This list was compiled by the Children & Family Program team of The Gathering Place, a non-profit, community-based cancer support center that offers a wide variety of FREE programs for anyone touched by cancer living in Ohio.  

Below are a some of the books they suggest for families with younger children along with a brief description of each book.   Thank you The Gathering Place!

If you know of a fantastic book that was not listed below, please post the information below in the comments section or email me at Robyn@CancerHAWK.com.  Knowledge is power…. please share the power!

 

 

Our Mom Has Cancer, Abigail and Adrienne Ackerman, American Cancer Society, 800/227- 2345, $8.95. Written by two children whose mother is diagnosed with breast cancer. They discuss their reactions to surgery, chemotherapy, and radiation. The illustrations are simple children’s drawings, but capture the emotion of the ups and downs of treatment. This book is hopeful but honest, and is more focused on feelings associated with treatment rather than what treatments are and why they happen.

In Mommy’s Garden, Neyal Ammary, Canyon Beach Visual Communications, 2007, OOP*. A mother uses the idea of a garden to explain cancer to her daughter. Cancer is described as weeds. The mother discusses how chemicals and digging the weeds out can kill this plant. She also says that the chemicals used can affect the petals of the flowers. Terms like chemotherapy, operation, and hair loss are not used. This book would be ideal for a parent to read along with their child to explain the meaning of the metaphors. Strengths of this book include the illustrations of people being drawn with blank faces in order for the readers to decide how they think the individual is feeling. Because of the metaphor this book uses and the simple pictures and language, young school-age children would most benefit from being read the story.

The Dandelion Seed, Joseph Anthony, DAWN Publications, 1997, $7.95. This book is the story of a dandelion seed that fears letting go of the flower. When the wind blows it free the seed learns that the world can be scary, lonely, and beautiful. Once it reaches its new home, it blooms into the dandelion it was meant to be that then spreads its seeds. This book is a beautiful metaphor for those looking to know that in a journey that is scary and lonely a positive ending can await.

Lance Armstrong: The Race of His Life, Kristin Armstrong, Grosset & Dunlap, 2000, $3.99. Children experiencing cancer may want to know of others that have also experienced the disease, including celebrities. This hopeful Level 3 reading book gives the story of bicyclist Lance Armstrong and how he has overcome challenges throughout his life, including beating cancer.

The Paper Chain, Claire Blake, Eliza Blanchard & Kathy Parkinson, Health Press, 1998, (1- 800-643-2665), $8.95. An excellent book for young children, from late pre-school through school-age, which presents a standard range of events that occur when a mother has cancer. Surgery, hospitalization, chemotherapy and radiation are all discussed. Language level and illustrations are very good; the only disadvantage of this book is that it may present too much information for the younger children, especially since children may be exposed to material which may not be part of their family’s cancer experience

Good Luck, Mrs. K.! Louise Borden, Aladdin Paperbacks, 2002, $6.99. A story for mid-school- age children about a teacher with cancer, this book fills a gap in the literature. The illustrations and text are well done, and would be helpful to a child whose loved teacher had to leave school because of cancer. This book has a positive ending as the teacher does make a return the next year.

Can I Catch Cancer?, Brittany’s Books Publishing, 2007, $7.95. An attempt to teach the meanings of words such as cells, cancer, malignant, and chemotherapy, using colors, simple concepts, and cute language. This book is visually geared for very young children, but the text would be too difficult for these ages. Older children may be offended by the childishness of the art.

Grandma Kathy Has Cancer, Colleen Buckley, Dog Ear Publishing, 2007, $11.50. The real life situations presented in this book of a granddaughter and grandmother can help children to understand how cancer can physically affect someone while the individual herself does not change. With emphasis in how the grandchild and grandmother support each other throughout the ups and downs of cancer treatment, this simple and direct story is told through a child’s voice alongside cheerful, full-color illustrations.

What Is Cancer Anyway: Explaining Cancer to Children Of All Ages, Karen Carney, Dragonfly Publications, 1998, $7.95. A book in the Barklay and Eve series. Coloring book format, with lots of information on cancer, radiation and chemotherapy. Addresses cancer in a grandparent. Less focus on questions children might have, but emphasis on all cancers being different and the importance of asking questions. While, the text is appropriate for school-age children they might be offended by the childishness of the main characters being dogs.

When the Boys Ran the House, Joan Carris, Lippincott, 1982, OOP*. Tells the story of four young children who take on household responsibilities while their mother is sick and father is away. Cute, rather silly, for young to middle school-agers. It does address some of the issues children face when a parent is unable to fill normal roles.

Our Family Has Cancer, Too, Christine Clifford, Pfeifer-Hamilton Publishers, 1998, $6.95. Using cartoon characters, this book is for the 7-12 year old who is dealing with family cancer. The story presents a family in which the mom is diagnosed with cancer and her two sons learn about hospitalization, chemotherapy, radiation, and what changes there will be in their lives. There are good suggestions for adults to help children understand the material.

Someone I Really Love Has Cancer, Dana Cohn and L.E.Murray, self-published, copies available from 203/226-9165, 1999, OOP*. As one of the few books developed for younger children, this book has simple line drawings of animated figures and deals with the changes in a person from cancer and chemotherapy. Common questions that children have are also presented. The father is the person with cancer in this book. It is available in both Spanish and English.

My Mommy Has Breast Cancer, But She Is OK!, Kerri M. Conner, Xylophone Press, 2010. This book is about a girl named Maddie and her relationship with her mother as her mother gets treatment for breast cancer. It addresses her feelings towards her mother’s physical and emotional changes such as the way she spends times with her mother, shows her affection towards her, and the differences in her daily routine. These changes are addressed to Maddie by comparing her mother’s changes to that of a butterfly with constant confirmation that things are different and difficult but okay. The story is unique in that it features African-American characters and shows a return to normalcy in a mother one year after treatment.

Let My Colors Out, Courtney Filigenzi, American Cancer Society, 2009, $11.95. This board book tells the story of a young boy who uses color to express his many different emotions as his mother undergoes cancer treatment. As his feelings range from sad to happy to angry, the boy realizes that it’s okay to go through a range of feelings and that it is important to let them out. This book is ideal for children ages 2-5.

Tickles Tabitha’s Cancer-Tankerous Mommy, Amelia Frahm, Nutcracker Publishing Company, 2001, $9.95. A great, silly little book that handles young children’s emotional reactions to a parent with cancer very well. The only treatment mentioned is “medicine” and most of the book focuses on hair loss, changes in mother’s energy, and children’s struggles with family changes.

Just the Facts: Cancer, Oliver Gillie, Heinemann Library, 2004. This is a comprehensive and straight-forward guide to cancer that gives an overview of the disease through a description of what it is, its various forms, how people live with it, and treatment options. Personal stories from cancer survivors are throughout the book. Full color photographs accompany the text. Appropriate for older school-age children to teens.

The Valentine’s Day Gift, Allison Grace, Chagrin River Publishing, 2005. A first person account of a school-age girl’s experience with her mother’s breast cancer. It is a very positive upbeat story, but fairly specific to the experiences of this one child. She does talk about her feelings, and what helps her cope, and gives some information on cancer itself. The book is mostly text, with minimal illustrations.

You are Not Alone: Families Touched by Cancer, Eva Grayzel, self published, 2010. An easy to read book featuring a collection of stories from children all over the world who explain what they do to cope with cancer in parents, siblings, relatives, and themselves. In addition to giving suggestions of ways to help deal with feelings, this book may give a child comfort in feeling that they are not alone in having to adapt to the changes that are happening in their family because of cancer.

Becky and the Worry Cup, Wendy S. Harpham, Harper Collins Publishers, 1997. This highly recommended 48 page chapter book for ages 7-10 tells the story of a girl named Becky and how she and her family cope with her mother’s lymphoma diagnosis, chemotherapy and its side effects, cancer recurrence, radiation, and adjusting to their “new normal.” Highlights of this book include multiple examples of realistic situations that may cause a child to be worried, embarrassed, afraid or angry and the many different ways that a child can cope with them. In addition, the book also uniquely addresses why, even when a parent is in remission, it helps families to not forget about the cancer. The book ends with the positive message that although lemonade cannot always be made out of lemons, it is important to try and appreciate the positives in life. When a Parent Has Cancer: A Guide To Caring For Your Children is the parent accompaniment to this book that explains how to address many of the issues presented in Becky & the Worry Cup.

Nana, What’s Cancer?, Beverlye Hyman Fead and Tessa Mae Hamermesh, American Cancer Society, 2010, $14.95. This comprehensive book gives a thorough explanation of the medical and emotional aspects of cancer. Designed for school-age children, it is separated into chapters that focus on typical concerns of this age group including whether cancer can be caught, why some cancers are worse than others, whether anyone can get it, and what can be done to prevent cancer. The information given is designed to be both comforting and honest to the reader.

Sammy’s Mommy Has Cancer, Sherry Kohlenberg, Magination Press, 1993, $9.95. A simple story with nice illustrations about a mother with cancer. Appropriate for younger children, but does cover issues of surgery, chemotherapy, hair loss, and return to wellness.

When A Parent is Very Sick, Edna LeShan, Atlantic Monthly, 1986, OOP*. Written for older school-ager or young teen, this book identifies the many responses a child might have to a parent’s illness, hospitalization, or death. Special focus is given to living with a chronically ill parent and to mental health problems.

When Someone You Love Has Cancer: A Guide to Help Kids Cope, Alaric Lewis, Abbey Press, 2005, $7.95. A series of specific statements about the impact of cancer, with illustrations for each concept like “It’s O.K. to be mad,” “Talking helps,” and “Sometimes people don’t get better.” Each page can be read separately, and the illustrations are younger than the narrative. A good tool for parents who want to chose their own points of emphasis, although younger children would have a hard time skipping specific pages.

The Rainbow Feelings of Cancer: A Book for Children Who Have a Loved One with Cancer, Carrie and Chia Martin, Hohm Press, 2001. A ten year old girl tells about the many feelings that she has concerning her mother’s cancer. Her drawings accompany the text.

Someone I Love is Sick, Kathleen McCue, The Gathering Place Press, 2009, $21.95. This is a customizable book to use when talking with children ages 2-6 years old when a parent or grandparent has cancer. Pages can be selected to address the family’s specific situation including diagnosis, treatment, hospitalization, recurrence and, if need be, end of life. It can be used by both families and health care professionals to provide educational information and recognize emotional responses to cancer.

Butterfly Kisses and Wishes on Wings: When Someone You Love has Cancer . . . A Hopeful, Helpful Book for Kids, Ellen McVicker, self-published, 2006, $16.95. In this well- written story of a boy whose mother has cancer, a clear and honest explanation is given of the disease that is helpfully accompanied by drawings of cells. Surgery, radiation, and chemotherapy are each explained. The book discusses the emotions and questions a child may have and emphasizes what a child can do to help themselves and others when a loved one has cancer. This book also has its own website, butterflykissesbook.com, that has further resources to help a child cope.

Chemo Cat, Cathy Nilon, Ravenna Press, 2007, $9.95. A story about a cat family in which the mother is diagnosed and treated for breast cancer. The story’s simple language can provide a starting point to discuss chemotherapy, changes in physical appearance, and changes in the home. Common questions children ask are addressed as well as some of the emotions they may feel such as sadness, anger, jealousy, and embarrassment. The book ends on a positive note reflecting on the strengths of the family that have helped them cope with cancer.

The Hope Tree: Kids Talk About Breast Cancer, Laura Numeroff and Wendy Harpham, Simon & Schuster, 1999, OOP*. This book uses animal illustrations to familiarize children with some of the significant stress points when a mother has breast cancer. Issues such as reactions to diagnosis, understanding changes, family meetings, dealing with feelings, positive attitudes, etc., are addressed in this book through children’s personal stories. This book makes it easy to pick and choose information relevant to the situation of a family. NOTE: This same book is also published as Kids Talk by Samsung Telecommunications and Sprint PCS, 1999, OOP*. The content is identical.

When Bad Things Happen: A Guide to Help Kids Cope, Ted O’Neal, Abbey Press, 2003, $7.95. This book is a series of specific questions and concerns that children can have when bad things happen as well as suggestions for coping. Examples include “However you feel is okay,” “Why?,” and “Try to forgive.” Illustrations are younger than the narrative. God is mentioned throughout the book as a source of support. Each page can be read separately with the illustrations being younger than the narrative. This is a good tool for parents who want to choose their own points of emphasis, although younger children may have a hard time skipping specific pages.

My Mommy Has Cancer, Carolyn Parkinson, Park Press, 1991. A short book for younger children about a boy, Eric, whose mother has cancer. Cells in the body are described as bubbles, and cancer is presented as bad bubbles. Chemotherapy is explained. There is some focus on the sadness the entire family feels, although the books presents hope for the future.

Mommy’s In The Hospital Again, Carolyn Parkinson, Solace Publishing, 1994. Great illustrations of a young boy dealing with his mother’s cancer. The child is kindergarten age, but much of the language of this book is for somewhat older children. It does deal with a sudden hospitalization and the honest fears and reactions of a young child.

A New Hat for Mommy: Helping Children Express Their Concerns on Cancer, Hannah Grace Perry, BookSurge, 2005, $10.99. A story of a nine year old girl named Lucy as she experiences her mother having cancer treatment. It explains the meaning of cancer, as well as what happens during hospitalizations and surgery. Questions to ask children about what Lucy and her family are experiencing are included throughout the book. This book is a good resource to start a conversation with children about their feelings and to help them feel that they are not alone. As the book is written with a lot of text in a simple style that discusses both complex issues and Lucy’s talking toy cat, it would be ideal for a parent to read to a young child while summarizing its content. It may also be appreciated by older school-age children looking for explanations about cancer, its treatment, and the feelings associated with it.

Daddy Kat gets a Brain Tumor, Melinda Rector, Lulu.com, 2007, $18.20. This book is the story of a cat who shares her reactions to her father’s brain tumor. The story ends with the father going to hospice and dying from his cancer. Children may find the story difficult to follow. The story’s references to a cat’s multiple lives may not serve to give a clear explanation of death.

When Mommy Had a Mastectomy, Nancy Reuben Greenfield, Bartleby Press, 2005, $14.95. This well-written book addresses the special connection that a child can have with her mother’s breasts and the difficulty she can have in learning about the cancer and need for the breasts to be removed. It also follows the child’s role and feelings as her mother has the surgery and experiences the lengthy waiting period of recovery. This story is an excellent choice to prepare a child for a loved one’s mastectomy and open up conversation.

When Mama Wore A Hat, Eleanor Schick, Wyeth, 2007, *W. This is a well-written book about two children that have a mother with cancer. The book gives a great deal of attention to the topic of chemotherapy treatment and common concerns and emotions a child has when a parent has cancer. It ends on a positive note with the mother feeling better after her treatments have been completed. This is one of the few stories in which the parent is single.

When Mommy Is Sick, Ferne Sherkin-Langer, Albert Whitman and Company, 1995, OOP*. Although not specifically about cancer, this is a very good little book which addresses many of the concerns a child has when a mother is sick and is hospitalized. Great illustrations and language level for younger children, and could be safely used to address separation concerns and coping for children facing any type of parental illness.

Cancer & Kids, Rae Simons, AlphaHouse Publishing, 2009. This comprehensive book defines cancer, explains the different types, discusses its various causes and methods for diagnosis, and provides information on ways to protect oneself against cancer and help to find a cure. A real life story is also provided about a family experiencing childhood cancer.

The Year My Mother Was Bald, Ann Speltz, Magination Press, 2002 $9.95. Nicely written book for mid- or older-school age children when a mother has breast cancer. Quite specific to diagnosis, with lots of medical information. Does emphasize emotions, questions, and changes that occur for a child in this age group.

Max’s Daddy Goes to the Hospital, Danielle Steele, Delacorte Press, 1989. This book is the story of four year old Max and how he copes with his father’s hospitalization and injuries after he breaks his arm and leg while firefighting. Although this book does not focus on the topic of cancer, children may be able to relate to the emotions of Max and his mother when they find out his father is injured, Max’s feelings and questions about having to wait to visit his father in the hospital, the experience of Max first seeing his father injured and with an IV, and the wait for his father to recover.

Mom and the Polka-Dot Boo-Boo: A Gentle Story Explaining Breast Cancer to a Young Child, Eileen Sutherland, American Cancer Society, 2007. A very simple story that is ideal for young children in explaining breast cancer, “special medicine,” the feelings a parent might have, and return to wellness. Children’s drawings accompany the rhyming text.

Hair for Mama, Kelly A. Tinkham, The Penguin Group, 2007. This comforting and humorous book is about a boy whose mother has cancer. Because of her hair loss, she does not want to be in the family photo. Her son Marcus makes it his mission to find her hair so that she will be in the photo and wishfully, feel better. The story’s resolution of the boy talking to his mother about his feelings helps him to learn why hair loss occurs and address his underlying concerns for his mother. Full page watercolor pictures illustrate the story. It is one of the few picture books available that features an African-American family.

When Eric’s Mom Fought Cancer, Judith Vigna, Albert Whitman and Company, 1993, OOP*. The story of a young boy whose mother has breast cancer. Surgery and chemotherapy are addressed, and good examples of guilt and anger on the part of the child are provided. Daddy plays an important role in this book in supporting his son.

Where’s Mom’s Hair?: A Family’s Journey Through Cancer, Debbie Watters, Second Story Press, 2005, $12.95. This is a family’s story about a mother’s cancer, illustrated by actual photographs of the diagnosis, hair loss and chemotherapy. The text is simple and told from a child’s point of view, and the emphasis of this book is on hair loss and re-growth, with a sense of celebration for the end of treatment.

Mira’s Month, Deborah Weinstein-Stern, BMT Newsletter, 1994, (1-708-831-1913), OOP*. A simple story about a four-year old whose mother has cancer and has to be in the hospital for one month. Issues around missing mom, visiting the hospital and coping with separation are addressed, and there is a happy reunion in the end.

Promises, Elizabeth Winthrop, Clarion Books, 2000, $16.00. Good focus on emotions and reactions of a young child, especially anger and confusion. This book does not use the word “cancer,” but describes side effects of treatment, especially hair loss, and sudden hospital stays. Emphasis is on the disruption to a child’s life when mother is sick.

Once Upon A Hopeful Night, Risa Yaffe, Oncology Nursing Press, 1998, $7.00. This small book is the story of a mother’s cancer, told in poetic verse, with line-drawn illustrations which are fairly mature in their depiction of the experience of cancer. Good for school-age children.

Adult Survivors of Pediatric Cancer: Get the 411 on Late Effects of Cancer Treatments

 

Thanks to advances in early detection and better treatment regimens, survivors of childhood cancers often go on to live full and productive lives.  However, the same treatments that cure cancer can also put survivors at risk for future medical problems.  Such health problems, known as “late effects“, can occur months or years or even decades after successful treatment has ended.   

FACT:  In a large study of adult survivors of childhood cancer, researchers have found that more than 95% suffered from a chronic health condition by the age of 45, including pulmonary, hearing, cardiac and other problems related either to their cancer or the cancer treatment.

FACT:  The chances of having late effects increases over time so the older you get, the more likely you are to experience health problems.  Risk factors vary depending type of cancer originally treated, location & size of tumor(s), treatment regimens utilized as well as other patient-related factors.

FACT:  Survivors need proactive, clinical health screenings and ongoing, specialized follow up care. Regular follow-up by health professionals who are experts in finding and treating late effects is key.  The exams should be done by a health professional who is both familiar with the survivor’s risk for late effects and can recognize the early signs of late effects.

 

If you are an adult survivor of pediatric cancer, take a look at these RESOURCES that focus on late effects of cancer treatments:  

* Survivors Taking Action & Responsibility (STAR) program at the Lurie Comprehensive Cancer Center of Northwestern University is a comprehensive long-term follow-up program specifically created for adult survivors of pediatric cancer.   STAR is one of several programs in the country to offer this specialized service.  Here, annual check ups are tailored to each patient and may include a heart ultrasound, a battery of blood tests, a mammogram, a chest MRI, a session with a counselor as well as many other diagnostic tools.

I also LOVE their GET EMPOWERED: A video education series for childhood cancer patients and survivors.  Topics include the impact of childhood cancer on adult survivors, making the transition to adult health care, cardiac risk factors, fertility, finding a “new normal” and navigating the emotional side of survivorship.

*  Another great source of information is The Children’s Oncology Group’s Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers.  Talk to your doctor(s) about these guidelines.

 

*  Beyond The Cure has a very informative website that provides detailed information about the late effects of a cancer diagnosis and treatment involving all aspects of survivors’ lives. To help analyze late effects specific to your diagnosis and treatment, check out their Late Effects Assessment Tool.

*  My Heart Your Hands was created by 2 adult survivors of pediatric cancer.  Their mission is to not only raise awareness of the potential late effects of cancer treatments, but to also equip survivors with information and tools they need to manage their follow up care.  Check out their listing of Late Effects Clinics located throughout the US or listen to founder Stephanie Zimmerman’s story.

 

Remember, the more you know about the possible long-term effects, the better prepared you will be to meet any challenges the future may bring.

If you know of other survivorship resources that focus on late effects of cancer treatment, please post them below.  Knowledge is power.  Let’s share the power!  

 

(sources:  Natl Cancer Institute; The STAR Program; WSJ.com)

L’Shana Tovah (Happy New Year) & Some Advice on How to Live Life

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Readers of CancerHAWK have told me that this particular post really resonates with them. So in honor of the Rosh Hashanah, the Jewish New Year, I think it’s fitting to re-post this one today… and BTW, I STILL read this every single morning as I’m getting dressed- it hangs on a mirror in my bathroom.  It gives me perspective and helps me remember that although life isn’t what I expected it to be, it’s still a gift…. after all, that’s how Alan always saw it.  Wishing you all a healthy, sweet, joyful, cancer-free New Year!

 

This post is called “How to Live Life” and was written by Regina Brett of The Plain Dealer, Cleveland, Ohio.  Ms. Brett says, “To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most-requested column I’ve ever written.”  She recently added 5 more lessons.  So without further ado, here is Regina Brett’s list of 50 life lessons…

1. Life isn’t fair, but it’s still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Don’t take yourself so seriously. No one else does.

5. Pay off your credit cards every month.

6. You don’t have to win every argument. Agree to disagree.

7. Cry with someone. It’s more healing than crying alone.

8. It’s OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won’t screw up the present.

12. It’s OK to let your children see you cry.

13. Don’t compare your life to others’. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn’t be in it.

15. Everything can change in the blink of an eye. But don’t worry; God never blinks.

16. Life is too short for long pity parties. Get busy living, or get busy dying.

17. You can get through anything if you stay put in today.

18. A writer writes. If you want to be a writer, write.

19. It’s never too late to have a happy childhood. But the second one is up to you and no one else.

20. When it comes to going after what you love in life, don’t take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don’t save it for a special occasion. Today is special.

22. Overprepare, then go with the flow.

23. Be eccentric now. Don’t wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness except you.

26. Frame every so-called disaster with these words: “In five years, will this matter?”

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time time.

31. However good or bad a situation is, it will change.

32. Your job won’t take care of you when you are sick. Your friends will. Stay in touch.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything you did or didn’t do.

35. Whatever doesn’t kill you really does make you stronger.

36. Growing old beats the alternative – dying young.

37. Your children get only one childhood. Make it memorable.

38. Read the Psalms. They cover every human emotion.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.

41. Don’t audit life. Show up and make the most of it now.

42. Get rid of anything that isn’t useful, beautiful or joyful.

43. All that truly matters in the end is that you loved.

44. Envy is a waste of time. You already have all you need.

45. The best is yet to come.

46. No matter how you feel, get up, dress up and show up.

47. Take a deep breath. It calms the mind.

48. If you don’t ask, you don’t get.

49. Yield.

50. Life isn’t tied with a bow, but it’s still a gift.

Coping With Mesothelioma: A Support Group for this Rare Cancer

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Meet GUEST BLOGGER Faith Franz.  Faith is a writer for The Mesothelioma Center, an organization that provides support and resources for people and families with this rare disease.  Faith also likes to spread the word about the benefits of alternative medicine.

If you were diagnosed with lung cancer, you wouldn’t take chemotherapy drugs that treat leukemia. If there were malignant tumors on your kidney, you wouldn’t have surgery on your ovaries. So why, if you were diagnosed with malignant mesothelioma, should you settle for a support group that’s not designed specifically for mesothelioma patients?

Until recently, patients with this rare cancer have had few specialized care options – on both the medical and the emotional side of the spectrum. But as more research goes into this asbestos-related malignancy, doctors and social workers alike are learning how to address mesothelioma’s unique challenges.

Take, for instance, The Mesothelioma Center’s virtual support group. Hosted by Dana Nolan, a licensed mental health counselor, this group focuses exclusively on mesothelioma-related topics. It’s designed to fill the gap left by general support groups (or the lung cancer groups that many patients turn to in the absence of a mesothelioma-specific network).

In this free, telephone/online support group, patients and their loved ones are guided through emotionally-loaded issues such as:

  • Deciding when to forego cisplatin, carboplatin and other mesothelioma drugs in favor of alternative treatments
  • Adjusting to reduced physical abilities (when symptoms like breathlessness and chest pain get in the way of everyday activities)
  • Overcoming the financial challenges of paying for treatment, traveling to national treatment centers and taking a leave of absence from work
  • Discussing worst-case scenarios, legal arrangements and end-of-life care directives with relatives

Patients can also connect with others who share their same diagnosis. While it may be difficult for them to find other mesothelioma patients in their city, they can combat feelings of isolation by reaching out to other patients across the nation and around the world. Here, fellow survivors can share the therapies that they’ve found successful, outline the side effects they’ve experienced and explain the coping techniques that have improved their lives.

The group serves as a safe, confidential place to give and receive valuable emotional support. Patients are free to share as much – or as little – of their personal lives as they’d like, and the moderator will make sure patients aren’t inundated with unsolicited advice.

If you’d like to register for the next session (The Mesothelioma Center hosts one each month), simply fill out the quick information form. You’ll receive a number to call and an access code to enter on the day of the meeting. Patient advocates are also available to help you through the simple registration process.

Applying for Social Security Disability Benefits with Cancer

 

Meet GUEST BLOGGER Ram Meyyappan. Ram is the senior editor and manager of the Social Security Disability Help website.  Social Security Disability Help contains information on how to apply for disability with over 400 conditions, helpful tips, FAQs along with an extensive disability glossary.

 

If you are a parent suffering from any type of cancer, the condition or the effects of the treatments you are undergoing may make it difficult to take care of your kids, let alone returning to work. In such cases, financial assistance may be available through one of the two Social Security Disability programs. There are two disability programs available to those who qualify under the SSA’s disability criteria. These include the SSI (Supplemental Security Income) program and the SSDI (Social Security Disability Insurance) program.

SSI

SSI is a needs-based program. In order to be eligible, you must be deemed disabled by the Social Security Administration and you must meet certain financial criteria. As of 2013, to qualify for SSI, you must not earn more than $710 as an individual or $1,060 as a couple. You must also not have assets that exceed $2,000 as an individual or $3,000 as a couple.

SSDI

Unlike SSI, SSDI is not a needs-based program. There are no financial criteria to meet. You must, however, have earned enough work credits through your previous work history. In order to have enough work credits to qualify for SSDI, you must have worked five of the past ten years. If you are not old enough to have worked five of the past ten years, you need to have worked half of the time you were able to do so.

Cancer and Meeting the Medical Requirements

The SSA uses a manual called “the blue book” to evaluate whether or not a condition qualifies for disability benefits. Cancer is covered in Section 13 of the SSA’s blue book under Malignant Neoplastic Diseases. Just being diagnosed with cancer alone does not mean that you will qualify for benefits unless it is a type of cancer that is listed in the compassionate allowances program. In most cases, the cancer has to be inoperable, have distant metastases (has spread), or be recurrent after surgical procedures or irradiation.

You will need to prove through your medical records and work history that your cancer prevents you from working at the job at which you were previously working or any other job for which you are qualified.

Qualifying Under the Compassionate Allowances Program

Certain types of cancer can qualify for Social Security Disability benefits in less than two weeks under the SSA’s Compassionate Allowances program. Under this program, individuals who are suffering from very severe conditions can bypass the standard disability claim process and be approved for benefits a lot faster. You will need a physician’s opinion stating that the cancer is not operable or an operative note stating that the cancer was not completely resected in order to qualify under this program. If an operative note is not available, a pathology report indicating positive margins can be used. When applying for benefits, make sure you include this medical documentation and make it clear how you qualify for benefits under the Compassionate Allowances guidelines.

There are numerous cancers that are listed in the compassionate allowance program. For a complete list of all compassionate allowances conditions, please visit: http://www.disability-benefits-help.org/compassionate-allowances.

How to Apply for Social Security Disability Benefits

You can apply for Social Security Disability benefits online or in person at your local Social Security office. Make sure that you have all of the medical evidence that you will need at the time of your application. While the SSA will have you fill out forms that allow them to request copies of your medical records, it is always best to submit medical records on your own as a part of your application to ensure that the SSA receives complete documentation that supports your disability claim.

If You’ve Been Touched By Breast Cancer & Are Planning A Wedding, Read On…

Image credit:  123RF Stock Photo

Image credit: 123RF Stock Photo

 

It’s that time of year again when The Wedding Pink presents one couple whose lives have been recently touched by breast cancer with a FREE dream wedding, valued between $30,000- $40,000.  OMG! So amazing!!

 

Founder Cheryl Ungar is a 22-year breast cancer survivor and a wedding photographer.  She has put together an extraordinary team of some of Colorado’s top wedding vendors — all of whom have generously agreed to donate their services and products to ensure The Wedding Pink is a spectacular event for one very special couple.

 

Here’s the dealio (as my daughter always says)…  If your life has been recently touched by breast cancer (fyi, the experience is not limited to the bride, but could be with the bride or groom’s extended family) AND are engaged or soon-to-be-engaged, you could be the lucky winner of this fairy tale wedding.

 

This year’s Wedding Pink will will take place May 15, 2014 in Larkspur, Colorado.  Applications are open to ANY legal resident of the US regardless of what state they live in.  Submissions will be open from August 15 – August 25.  The winning couple will be selected in early September 2013.  There are no income qualifications.  Winners will be chosen by a panel of judges.  To learn more about the submission criteria, click HERE.

Wishing you all a lifetime of health, love & happiness together….

Getting the 411 on Breast Reconstruction

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The Cancer Support Community surveyed 762 breast cancer survivors (who were eligible for breast reconstruction) and found that 43% of these women did not receive any info about breast reconstruction PRIOR to making surgical decisions (mastectomy or lumpectomy).  Why is this a huge problem?  Well, if you opt to reconstruct one or both boobs, the method you choose to reconstruct can be affected depending on how the initial surgery is done.  Since you can’t go back and re-do your mastectomy, this is an extremely important conversation to have with your doctor BEFORE a mastectomy takes place.

 

Whether you’ve been diagnosed with breast cancer or have a family history of breast cancer and/or the BRCA gene and are contemplating a mastectomy, check out BreastReconstruction.Org, the most comprehensive site on breast reconstruction that I’ve come across.

 

To provide a better understanding of the breast reconstruction process and the different options that exist, BreastReconstruction.Org has created a site that contains easy-to-understanddetailed information with illustrations and photographs on topics including: mastectomy; options for reconstruction; secondary procedures including nipple tattooing; pre and post operative care; as well as the latest news & information on reconstruction.  You can also read stories from other women who have walked in your shoes and learn from the decisions they have made.  It’s really a fantastic site.

 

BTW, my dear friend and kick-ass breast cancer survivor Diane Mapes (AKA @Double_Whammied) just wrote an incredible article on her breast reconstruction using the BRAVA/ fat transfer method.  To read about Diane’s experience, see her article “Reconstructing Hope.  Diane also blogs about breast cancer at www.doublewhammied.com.

 

 

 

 

Financial Assistance for Young Adult Cancer Survivors (Applications Due July 19)

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Common challenges facing many 20 & 30 year olds include paying off school loans, finding a job, securing health insurance and learning to live on their own.  These challenges are often compounded if there’s a history of cancer. When many young adults are finished with treatment, medical bills may have piled up, they are now too old to be on their parent’s insurance, and the debt starts spiraling out of control… but there’s help….

 

The SAM Fund provides financial assistance to young adults as they move forward with their lives after cancer.  Grants & scholarships can cover a wide range of post-treatment financial needs, including (but not limited to): current and residual medical bills, car and health insurance premiums, rent, utilities, tuition and loans, family-building expenses, gym memberships and transportation costs.  In 2011, SAM Fund awarded a total of $135,000 in grants and scholarships to 92 young adult survivors all over the country.  BTW, SAM Fund stands for Surviving And Moving Forward.  LOVE IT!

 

2013 Application Process is NOW OPEN.  Here’s how it works:

1.  Applicants must be between the ages of 17 and 39; a resident of the United States; and either finished with active treatment and free of cancer OR be one year following the completion of planned therapy OR be in remission on maintenance therapy.  If you have questions about eligibility, please email grants@thesamfund.org.

 

2.  Anyone interested in applying must first submit Part One of the application which is due by Friday, July 19th at 5:00 pm EST.  After a review period, selected applicants will then be invited to submit Part Two. Those applicants will be notified in November as to whether they have received a grant.

 

3.  Interested in learning more?

 

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