How would you feel if the eye doctor said: “Your child has eye cancer and will have emergency surgery to remove the tumor or one or both eyes?”
This book tells the story of a 27-year-old deafblind female retinoblastoma cancer survivor through the eyes of the survivor and her mother.
This book will inspire parents, guardians, and teenagers who are affected by childhood cancer or who are eye cancer survivors. Sometimes we have to look backward in order to move forward when going through tough times. It is not impossible to move forward with humor and resiliency. This book will show you how to do just that while stepping outside of your comfort zone.
Learn how Zaakirah and her mother Khaidah, thrived through life after the rare cancer diagnosis. In this book, they share experiences and what they learned from living with bilateral retinoblastoma and hearing impairment. This book helps you to gain a better understanding of this rare childhood eye cancer and its aftermath.
Zaakirah was six months old when her parents were told she has retinoblastoma. Here, they share real-life stories about a young girl and her mother making it to the other side of their rainbow. Read how they maintained their strength and dignity while continuing to maintain a happy, fulfilling, and healthy lifestyle. They share medical memories along with family and educational stories about surviving everyday life with retinoblastoma.
From the parental perspective learn how Khaidah raised a child who survives and thrives. This book will touch on holistic nutrition, the threat of cancer returning and the need for frequent specialist appointments and other secondary health issues that arise. You’ll be amazed at the way Zaakirah and her mother overcame adversity with resilience.
After reading this book you will realize your full potential and how resilient and truly special you are. It can feel like a long and lonely road in this journey called life. Zaakirah and her mother once felt like they were the only ones who dealt with these issues. With this book, you will remember that it takes a tribe.
In this book, you will learn how they learned to cope and laugh through:
❏ Experiences with bullying and other emotional trauma
❏ Standing out and being okay with it
❏ Conquering insecurities and fighting mental health
❏ Overcoming medical, mental and emotional related obstacles
❏ Real stories and examples providing advice that show that you are not alone
Read Excerpt Now.
Today there are 9000 children diagnosed annually worldwide. Retinoblastoma makes up 2% of all cancers diagnosed in children before the age of 15. It is the most frequently diagnosed eye cancer in children. An estimated 200 to 300 children in the United States will be diagnosed annually with this disease. Most children who are diagnosed with retinoblastoma are younger than six years old. Te average age of diagnosis is two years old. Girls and boys are diagnosed at equal rates.
Generally, 3 out of 4 children have the disease in 1 eye, while 1 in 4 children have the disease in both eyes. The 5-year survival rate for children with retinoblastoma is 95%. Retinoblastoma is considered a rare eye cancer that often has an impact on vision and hearing in young children and adults. People with hearing and vision impairments are described as having dual-sensory impairments (disorders).
The kind of tests used to screen for a second cancer depends in part on the kind of cancer treatment the patient had in the past. When doctors provide regular follow up care for cancer survivors, it helps them to further study late or possible side effects of childhood cancer treatments to develop safer therapies for younger children.
Excerpt from my mom, Khai’dah’s, Blog, The Sun Daughter
Zaakirah is a beauty and grace in motion – a gazelle moving through this life lifting the spirits of others, tearing apart mindless, dark feelings and empty thoughts of people who do not know her story. Our Sun Daughter is an artist who gives an image of its own life. She is illuminous, joyous, buoyant. She is creative, delicate, and with a sparkling optimistic personality. Whenever I read about people who are deaf and/or blind, I already know that I’m learning about exceptional human beings.
I love hearing my daughter laugh. She has a beautiful smile that fills a room with joy and light. She is so precious, gentle and smart. She is usually quiet, sensitive and stubborn. She genuinely cares about others and has a great sense of humor. She loves learning, traveling and taking great photographs. She is physically strong and so determined. She is adventurous and is a force of nature. She is our youngest child.
When I think about our daughter, I smile. I just want to hold her and kiss her face! I’m in awe of her beauty, courage, strength, and style. When I look at her I remember her favorite sights and sounds: Florida sunrises and sunsets, road trips, the Caribbean Sea, laughing with her girls, her photos of people and their life stories, great movies, food, music and family time! Our Sun Daughter learned to write in a script and swim at Montessori Elementary School. This is also where she learned to be very independent. Her favorite elementary school activity was singing Broadway show tunes in the chorus and field trips.
When she was a baby, her oncologist told us that one day our child may be blind. When she was a teenager, her audiologist told us that one-day Zaakirah may become deaf. We promised to give her a chance to use her monocular vision to see her world and to teach her how to be persistent and triumphant. Our goal for our daughter was to give her every opportunity to thrive and help her reach her desired level of accomplishment, no matter what.
My name is Zaakirah (pronounced zaa-key-ra). It means The Hereafter in Arabic. My mother’s name, Khai’dah, means one with a strong foundation in Arabic. My mother is the most committed, driven, intelligent woman I know. I believe I have inherited her writing genes, researching abilities and intellect.
Just like the Tupac song, Dear Mama, I am forever indebted to her and I could never make it up to her. I have my story, my version, my memory, but my mother remembers better from the parental perspective.
I was nine months old when my parents were told I had non-hereditary bilateral retinoblastoma (Rb). it was not passed on to me from either parent. However, it does mean one of my children will carry the gene. I barely remember the surgery and my life after that until our first road trips.
For the longest time, I never put much emphasis on the word “survivor,” nor truly understood the meaning of it. I was a young adult when I began to connect the dots. Now I understand that survivor is a positive word. I met children who were diagnosed after five years of age and were completely blind. The fact that I am still here with monocular vision is a blessing.
I appreciate my mother for prioritizing my mental health and knowing when to be my friend and when to be my parent. I appreciate her allowing me to express my feelings through music lyrics. My favorite memories are the moments where we could just dance together. We are both Sagittarians and when I was a child, she told me that I am her birthday present. We enjoy going to new places and trying new food. We share a love of trains, which ended up being our most used method of transportation! As I was growing up, I worked really hard to make my parents proud of me and I felt they wanted me to be proud of them too.
In this book, there will be alternating storytelling between my mother and me. She shared her perspective and experiences on her blog. I share my memories and perspectives in the following chapters. My mom created the blog to share our retinoblastoma stories with the international community of childhood cancer survivors. The chapters will shine a light on a nontoxic mother-daughter relationship as we both overcame the emotional struggle behind being not only survivors but thrivers. My dad was present throughout it all even when he was away due to work. I am my dad’s daughter, according to my mother, as we have many similar personality traits which you will learn
in this book.
In 2014, my mother wrote a letter and received a personalized response from our 44th president, Barack Obama, telling us that he signed a proclamation that claimed September as Childhood Cancer Awareness Month. We received a copy of the proclamation. That same year, my mother got back to her graphic designer roots with the help of Pinterest and created a retinoblastoma awareness poster in support of Childhood Cancer Awareness Month. Happily retired, my parents now live in the rural community of East Tennessee. My mother has trained to be an official reader of the Library of Congress which allows her to continue her research with access to university
and government libraries.
CHAPTER 1
ZAAKIRAH’S BEGINNING
The following sections are excerpts from my mom’s blog, The Sun Daughter. DURING PREGNANCY My husband and I lived in Atlanta, Georgia. The first time we visited Miami, Florida we talked about moving there. Even though the cost of living was higher than in Georgia, we needed more sunshine and discovered the most beautiful beaches and parks so we decided to move. Since we were new to the city, we didn’t have a physician. My first thought about being pregnant was waking up early one April morning before work and feeling nauseous. I couldn’t drink coffee or eat lunch that day. Instead, I made an appointment to have a pregnancy test at the offices of Planned Parenthood nearby. The test confirmed my suspicion. I
Bio
Zaakirah Muhammad Demba is a Brand Cultivating Strategist, professional photographer and digital marketer. She helps small businesses to make your social media pages look good and advise you on the best social media tactics for growing and being consistent with your brand on social media. At 6 months old, a Camera Saved Her Life. At 9 months old, she was taken into surgery to have her right eye removed due to a rare childhood eye cancer tumor that was detected by a photo her mom took. Her hearing slowly began to decline as she got older, but her other three senses kicked in and are functioning well.
At age five her mom gifted her with her first camera. She received her first digital camera in middle school. By the time she attended technical high school, she studied commercial photography. She never strayed too far from her purpose in life. Later on, she moved to Washington D.C. to expand her education in professional photography and videography. She currently resides in Nashville, Tennessee with her husband.
She has traveled to 10 countries so far. She took her professional camera on most of her out of country travels but Ghana, West Africa was the first time that others viewed her work as if they were on the trip and have traveled with her, due to the way she beautifully captures sceneries and personalities. She loves capturing the essence of humanity. As a people person and an empath, she wants her legacy to include the fact that she was able to see the good in you, help you live your best life, which inspired you to step outside of your comfort zone.
Get to Know the Author.
Can you tell the viewers a little bit more about yourself and how you became interested in writing?
I began journaling at a young age. English was also my best yet most favorite subject in school. I began writing articles and summaries for school newsletters, yearbooks, and even a local teen newspaper. I continued writing once I began traveling out of the country to share about my experience. Those writing skills turned in to copywriting for various social media clients. Now, some of these blog entries about my life's experiences have become sections in my book, Seeing Life Through a Different Lens.
I, just like everyone else, have a story to tell. The typical survival age of my childhood eye cancer is the age of five. The fact that I am still here, I know there are not many people who look like me, let alone many people with a story similar to mine. The closest person there is to me is Haben Girma, a deafblind lawyer who also released a memoir. it is important for my story to be told thus far because we never know when my last day is.
What do you hope for readers to feel after reading the book?
I want readers to be educated and empowered. I want them to be able to tap into their inner child and live their life to the fullest, without fear, and within reason. I also want them to see disabled people, people with cancer, and people with special needs under a different more positive and nonjudgemental light.
How long did it take you to write the book?
Due to imposter syndrome, it officially took me two years to write it. I would often start and stop and let life get in the way. My mom was running a blog for those two years. I finally buckled down and compiled my first draft give and take in about two months.
What do you suggest as a starting point for those who want to learn more about your type of cancer?
Google and Facebook Groups are your friends. There are plenty of groups for support of those who are significant others or immediate family members and friends of cancer survivors. I also encourage you to look up websites like the American Cancer Society, Stand Up to Cancer, and We C Hope, to learn more about childhood (eye) cancers.
Where can we find out more about you and your work?
I have a podcast where I share extensive stories of the book currently called Living Legacy Podcast. I also interview women of purpose sharing stories of resilience there. I am also very interactive on just about every social media network @illuminousone. I do my best to do a few live videos as well to allow you to get to know and learn from me.
What was the longest trip you have ever taken?
The longest flight was to South Africa for the inaugural Durban Essence Festival. That was about a 15-hour flight including one layover.
BONUS QUESTION FOR FUN: Do you have a big family?
Yes. There are a few family members I have not met because they have passed away or live so far away. However, in my immediate family, I have two older sisters and an older brother. I am the youngest of my siblings. I have 3 blood aunts and 3 blood uncles and lots of first, second, and third-generation cousins.
Find the Book and Author.
Email: zaakirah@zaakirahnayyar.com
Website: http://zaakirahnayyar.com/
Facebook: https://www.facebook.com/illuminousone/
Twitter: http://twitter.com/illuminousone
Instagram: https://www.instagram.com/illuminousone/
Linkedin: https://www.linkedin.com/in/zaakirahdemba/
Website: http://zaakirahnayyar.com/
Facebook: https://www.facebook.com/illuminousone/
Twitter: http://twitter.com/illuminousone
Instagram: https://www.instagram.com/illuminousone/
Linkedin: https://www.linkedin.com/in/zaakirahdemba/
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