Interview Marie Cheine – Helping Chronically Ill Kids with Books, Website, and Resources

Interview Marie Cheine – Helping Chronically Ill Kids with Books, Website, and Resources

Most children never see the inside of a hospital; however, there are some kids who are chronically, seriously or terminally ill. Today’s Author Interview Series introduces Marie Cheine who wrote a chapter book for young readers for exactly these chronically ill kids, their siblings, family and friends.

White Bear’s Big Adventure by Marie Cheine is the story of three multi-racial siblings and a stuffed bear named White Bear. The youngest sibling, Angel, has a rare medical condition called VATER Syndrome. When she is admitted to the hospital for a kidney transplant, her best friend, White Bear gets lost in hospital linens. The adventure begins when White Bear tumbles down the laundry chute and Angel’s family and friends try to track him down before she realizes he’s gone.

We thank Marie Cheine for her guest post introducing her book and for agreeing to take part in our Author Interview Series. We hope to learn more about the possibility of making a series of similar books.

Lorna: Many of our authors are parents of the children they write about; however, this is not your case. Tell us what motivated you to write White Bear’s Big Adventure.

<<Marie Cheine: The story is written for my niece, and most of what happened in White Bear’s Big Adventure really did happen. The reason I wrote it is after spending literally years visiting her and other young children who are chronically in the hospital, I realized their story needs to be told, but not from a standpoint of disease, but from a place of love and understanding.  It has been said before, but it is absolutely true that it takes a village to raise a special needs child and special needs children should be able to find themselves or people in similar situations in the books they read. We also wanted to make sure our books represent the absolute joy and love of life that special needs kids possess.

Lorna: In your book the youngest sibling, Angel, has a rare medical condition called VATER syndrome and this is what your niece has. Before reading about your book I had never heard about VATER syndrome.  How old is your niece now and how has she been affected by this syndrome?

<<Marie Cheine: My niece is now 13 years old.  VATER also known as VACTERYL has several components:

  • V stands for vertebrae, which are the bones of the spinal column.
  • A stands for imperforate anus or anal atresia, or an anus that does not open to the outside of the body.
  • C is added to the acronym to denote cardiac anomalies.
  • TE stands for tracheoesophageal fistula, which is a persistent connection between the trachea (the windpipe) and the esophagus (the feeding tube).
  • R stands for renal or kidney anomalies.
  • L is often added to stand for limb anomalies (radial agenesis).

Babies who have been diagnosed as having VACTERL association usually have at least three or more of these individual anomalies.

My niece has vertebral anomalies including a tethered spine which affects ability to walk and scoliosis.  When she was younger she was wheel chair bound, but she has had at least ten corrective surgeries, the most recent rods in her back to straighten out the scoliosis.  Her body was recently becoming so twisted that her heart was being compressed, and now, she stands straight, walks very well on her own and even gained about an inch in height!

She also was born with an imperforate anus and had an emergency colostomy right after birth.  That was reversed several years later.

She also has a cardiac condition called Wolfe Parkinson White Syndrome and has had a cardiac ablation. Luckily she has not yet had any further problems.

She was also born with one kidney that did not function and one that barely functioned. She was on dialysis until her first transplant at age 4.  Unfortunately, she lost that kidney and was on dialysis for several more years. She now has a functioning kidney for over a year and we cannot express how thankful we are to the donor family.

My niece was also born without a bladder and we are hoping with the miracles of modern medicine that there will be a safe and successful answer to that problem in the future.

Angel has literally spent years in the hospital.  Her disease has affected her in many ways. Because she spends so much time hospitalized, she has never been able to attend a real school. Since kindergarten she has been in hospital bound school, and now since her transplant, she does virtual school and participates through computer and also has a home-bound teacher for some of her classes.  Her life has been regulated by hospital stays, medications, doctor appointments and unfortunately, her father’s illness. She has had to endure over thirty surgeries and procedures yet, she is the most positive, loving and selfless person I have ever met. She is the light of my life, and a star at Tampa General Hospital. I don’t think there is anyone there that doesn’t know her. She is my inspiration every day.

Early Chapter Book for Chronically Ill Kids - White Bear's Big Adventure by Marie CheineLorna: Your book came out in January 2017, what positive comments have you received about it that have made all the effort worthwhile? What does your niece think about it?

<<Marie Cheine: My niece loves the book. It is about her and her very special friends, physicians and nurses at the hospital who all enrich her life every day.

We have been blessed to have some wonderful reviews:

From Black CATastrophy – the Alexis Chateau website:

“A book we highly recommend to young children unfairly confronted with mortality, and the parents struggling to provide them with the courage to pull through.  We love the diversity of the characters, and the tale of the first true love we experience as children: the love of our bear.”

From  Lucy Thompson

“I highly recommend this book but as a mom whose child spends so much time in the hospital and has a best friend like WB I think this book is a must for your personal library.”

From L Nanos:

This is a marvelous book for young children. It’s particularly apt for children in hospital and those with chronic conditions. It’s easy to read without ‘talking down’ and draws the reader into White Bear’s adventure. I’d recommend this book for school age kids, even the healthy ones! They’ll love it.”

SJ Main:

“This is a wonderful book for children who are going through the same struggles. There are many kids who feel like they may be alone and I felt that it was very sweet to bring a plush toy to life in order to demonstrate a child’s feeling in attachment thoughts, and their imagination.

This story would be very suitable for parents reading to their kids. The story is fun, full of adventure and has subtle learning messages that work well with the storyline. I recommend this book and enjoyed reading it.”

Vicki Goodwin:

“White bear is so cute and determined he kept the story light. This could have been a book that created worry, but instead it gave a positive spin. The seven year old and I read it together and we both loved White Bear.

The illustrations were cute and made the story bright and cheery.”

Sharman Apt Russell, winner of 2016 John Burroughs Medal, author of the YA Teresa of the New World

White Bear’s Adventures is a beautifully written and conceived book for an important audience–children who are sick and/or in hospitals, as well as for their brothers and sisters and cousins and friends. White Bear helps make the hospital a friendly place, and children will recognize him immediately as a smart and fun-loving ally. The illustrations are strong and bold. The book succeeds in being entertaining, informing, and reassuring all at the same time. I couldn’t recommend this more highly.”

Lorna: You wrote, « The project quickly grew into a vision – a series of books for and about children with all sorts of special needs, disabilities and illnesses, particularly serious illnesses…”  Are there other books soon to be published?

<<Marie Cheine: The second book in the series, White Bear Goes to Camp is being completed now.  Our amazing illustrator, Jeanine Henning, is working now on the cover and soon after will be creating all the pictures for each chapter.  Then comes the final editing and we will begin the publishing process.  My sister Lisa Barriera, Angel’s mother and I are having a lot of fun writing this story. It is a family affair. For anyone who has been following our website, www.whitebearsworld.com, you have seen the map of White Bear’s World. Many of the locations on that map will be mentioned in the next book, too.

Lorna: The first words one reads on your web site are:

« MAKING THE WORLD NICER ONE CHILD’S BOOK AT A TIME

All children should be able to find a book where they can see a reflection of themselves or find a window to a new world.” What will folks find on your web site? What do you write about in your blog?

<<Marie Cheine: My blog, www.mariecheine.com is really an introduction to me, my history with writing and occasional blogs about books, White Bear, and my family.  The blog section will be populated with anything and everything about books, health, family and friendship. As I meet more authors and read more children’s books, I plan to write more about them and to write about all the books I have loved growing up.  I also have a personal blog, www.marushkasplace.com where I write about many other things, including my niece and my obsession with Netflix.

Lorna: I read on your site, « More importantly, we plan to make White Bear available via White Bear’s World, an ambitious project that is underway providing security, safety and support to seriously ill kids everywhere.” Tell us more about this project.

<<Marie Cheine : We have a vision of making White Bear a reality for all kids with special needs, especially chronically ill kids who spend lots of time in the hospital. We want our site to be a place where kids can go to read up on news for kids, ask Angel questions via our contact page, read stories, submit their own stories, get ideas for books from our library page, etc.  Our map is now interactive, so for example, if one clicks on the camp, a link will come up with special needs camps around the country.  Some of the other buildings are interactive and there will be more in the near future.  We also have someone working on white bear computer games and apps which will be available on laptops and tablets as well as android and iPhones. As time allows, we will have White Bear writing his own stories on the blog page as well.

Our hope is that some day all kids facing seriously difficult situations will have a White Bear in their lives.  While there are not always good solutions, no child should ever feel alone.

It will take years for us to fulfill our dreams for this project and I hope we get there with a lot of help along the way.

Lorna: On your website you have a section titled “Book Collection”.  Please elaborate.

<<Marie Cheine: On that site there is a library page.  There are book covers and links to each book if a parent wants to purchase it or read more about it.

When one goes into a hospital one notices that politics, color, religion, social status, language and physical, mental and social abilities disappear. Everyone there is there for a purpose, to help a patient get better, to ease a family’s fear, and to empathise and care when a loved one passes on.  This is White Bear’s World, too.

When I was young, my mom found a doll with dark skin and dark curly hair for me, and a doll with lighter skin and blonde hair for my sister.  We loved those dolls.  They “looked like us.” We are passionate about making that feeling exist for children in the hospital or any other children for that matter when they read a book. We believe every child should be able to find at least one book that has someone like themselves. We are asking authors who have written children’s books that reflect the diversity of our world to allow us to “advertise” by adding their books to our library page. As time goes on, we hope to be able to interview the authors as well and add a little summary of each book as time allows.

Lorna: Thank you very much for a copy of your book, the photos, and guest post. The team at Special Needs Book Review wishes you all the best. Please let us know when other books in this series are published.

Follow Marie Cheine:

Read Also:  Review of Early Chapter Book for Chronically Ill Kids – White Bear’s Big Adventure by Marie Cheine

Buy White Bear’s Big Adventure  Amazon.com  Amazon.ca

This post was written by Lorna
Lorna d’Entremont: Co-owner of SentioLife Solutions, Ltd. the company behind KidCompanions Chewelry (2007) and SentioCHEWS (2013), mother of three, grandma of 5 and wife. She is a retired teacher and special needs advocate. Throughout she has taught all levels from grade 2 to grade 9. Lorna loved teaching and enjoyed seeing the students progress in the school system. During her 30 year career she took a few years off to raise her three children.
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