Retinoblastoma is a family cancer – it impacts everyone from the diagnosed child, their parents and siblings, to grandparents, aunts, uncles, cousins, and close friends. Family experiences and perspectives of retinoblastoma vary widely. We decided to capture some of them in our 2020 alphabet. The paragraph and image suggestion for each letter was contributed by an individual whose loved one was diagnosed with retinoblastoma, or who is themself a survivor.
We will soon add a video showcasing the complete Alphabet and all the images shared throughout the year. A full text version can be found directly below.
Aunt: “As an aunt, it’s been a challenging, rewarding journey as my niece conquered Rb. She has always maintained a bright outlook in spite of her battle with cancer. She refuses to let the lingering effects stop her doing big things with her life. She’s my inspiration.” – Kristine, her niece was diagnosed with bilateral retinoblastoma in 2001.
Brave: “When my baby daughter was born with Retinoblastoma, I was unprepared for the battle ahead. She didn’t fully comprehend what was happening. But I knew I needed to be brave for both of us.“ – Lori, mother of an 18 year old Rb survivor.
Childhood: “Coming to the realization that I might have grown up without a sister has changed my perception of my childhood. I would have been a completely different person. I still have an ongoing fear that my sister will get cancer again and not survive.” – Noah, brother to an Rb survivor.
Decision: “We are honest with our son. We say, you got sick with a cancer called Retinoblastoma, and sometimes, when that happens, a choice has to be made. Mommy and Daddy had to make a really hard decision to have your eye taken out so you could stay here and be with us.” – Kimberly & Matthew, parents of a 6 year old Rb survivor.
Eyes: “I’ve heard the eyes are the windows to the soul. There’s truth to that. When my daughter first lost one of her eyes, I grieved for the loss, I miss it. I probably will forever. One of her windows closed, but has not silenced her beautiful soul. I think it may even be brighter and stronger. Her strength and light are impossible to miss, even through one window.” – Katie, mother to Imogene, a 2 year old Rb survivor.
Flood: “Once you hear the sentence “your child has cancer” it is a constant flood till the end of treatment. It’s a flood of emotions, flood of information, flood of doubts, but in the middle of the flood you look at your child and you find the strength to keep your head out of water to survive.” – Jackie, Mother of a Rb fighter.
Grateful: “Retinoblastoma is such a rollercoaster. We don’t ever know what the future will bring but it has taught me that every day is a gift. My daughter is a warrior and I am grateful to be in this battle with her.” – Diana, mother to a 17 month old Rb survivor.
Helicopter Mom: “It’s a sad scary world we live in. Always be aware. Always hold your child’s hand. Always keep them close. People say I’m a helicopter mom…let them say what they want.” – Lindsey, mother to an Rb survivor.
Innocence: “Untouched by surgeon hands, they knew not what was coming. Their body now presents as a canvas of war wounds from a battle no one wanted. There is no forgetting their perfect innocence.” – Candice, mother to a 5 year old Rb survivor.
Joy: “As a parent of a child with a potentially life-threatening illness, it is easy to become overwhelmed by uncertainty. Sometimes the only way through is to live moment by moment. I have learned to look for the little gifts that life brings you; to absorb the bits of joy that can be found in an ordinary day.” – Emily, mother to an Rb survivor.
Kindness: “Retinoblastoma gave us a great teachable moment with our daughter about kindness. We were able to educate her about being kind despite differences. Don’t be afraid of being different and learning about differences in a kind way.” – Justin and Courtney, Parents of a 4 year old RB survivor.
Lesson: “When faced with a trial, look for a life lesson. Having cancer has taught me God gives us battles He knows we are strong enough to overcome, and they often come with blessings. I have been fortunate to meet people who understand what it is like with no explanation. Going to camp with kids like me has given me a strong sense of community like no other. I am truly not alone.” – Leah, age 16, Rb survivor.
Mindfulness: “I have memory gaps of the first two years my son was diagnosed. I tried very hard to keep things as normal as possible, especially for my non-Rb daughter. My mom calls it auto-pilot mode. You smile and go through the motions but your heart is too broken to be mindful of the moment.” – Elske, mother to a 12 year old Rb survivor.
Navigate: “Once you hear “your child has Retinoblastoma,” you are mercilessly tossed into uncharted waters. First the emotions overwhelm you: shock, fear, and guilt. Next come endless decisions. I had to take everything one day at a time. I didn’t have the ability to navigate beyond that. I also had to accept support. Trying to control and manage everything is futile and exhausting.” – Yvonne, mother to an Rb survivor.
Optimistic: “When your child is diagnosed with cancer, you are filled with fear of the unknown. As you begin your journey, you realize you entered a community that has been through the same diagnosis. It is not so lonely, and seeing children and all they have overcome gives you hope for the future that lies ahead.” – Tim, Dad to an Rb survivor.
Purpose: “My nephew lost both eyes to cancer. This gave me purpose. I sought to raise awareness about retinoblastoma which none of us had heard of. To advocate for blind children, I left a 16-year career to become a Teacher for the Visually Impaired. Rb tears through your life and upends everything. But it is also the reason I am a teacher.” – Shelly, Aunt to an Rb survivor.
Quintessential: “After all is said and done, she was not her eye. We miss her eye, but it did not define her. Even without it, she is still quintessentially perfect, our wonderful granddaughter.” – B.J., Grandmother to a 2-year-old Rb survivor.
Rati: “A little girl from the other end of the world, linked to me by the same infant eye cancer, whose name means ‘love’. A little girl on the threshold of life, who held out her hand and said ‘see me, see how I could not live, but others can’. And so WE C Hope because of Gorata and her family.” – Abby, Rb survivor.
Survive: “Living with Retinoblastoma means being a rare gem fighting to survive. We are literally ‘the eyes of a tiger.’ I would tell my younger self not to let anyone or anything get in your face or in your way when it’s about a childhood cancer diagnosis.” – Zaakirah, Rb Survivor.
Tough: “Having cancer is scary, hard, painful, TOUGH. My sister lost her eye, her hair and half her weight when she was only 2. But you know what’s tougher than cancer? My sister. Tough isn’t just something that’s difficult. Tough also means strong and resilient. And that’s my sister. She’s the strongest, bravest, coolest, TOUGHEST person I know.” – Michael, brother to an Rb Survivor.
Unforgettable: “Having a child diagnosed with cancer produces many unforgettable experiences and moments. Unforgettable nurses. Unforgettable friends and family members stepping up to help. Unforgettable. Our fears from our son’s diagnosis time are unforgettable but so are the hope and dreams.” – Gary, father to an Rb survivor.
Verdict: “Never give up on hope and trust your parental instincts. When everyone else is losing hope, saying your child only has months to live, do not despair. Do not lose faith and hope that your child will survive. My niece is alive after one year of that verdict because my sister never gave up. She keeps doing her best to find, get, try, the treatment for her daughter.” – Peggy, aunt to an Rb survivor.
Warrior: “My nephew is a brave warrior. Although he was very young when he was diagnosed with retinoblastoma, he has demonstrated himself to be a fearless fighter. Nothing holds him back. His amazing spirit and smile have filled our lives with faith, love and hope. He inspires us.” – Carlos, Uncle to an Rb survivor.
eXplain: “I told my daughter she had cancer and it was making her eye sick, so we had to take it out so the rest of her doesn’t get sick. We’ve explained it to her since her eye was removed at 20 months old. She gets it.” – Sarah, mother to a 4 year old Rb survivor.
Yelling: “It shatters and rips my heart when my son yells while I have to hold him down with the nurses and doctors to access his port, dilate his eyes, or give him medicine. He yells more while walking the hospital halls or passing other doors in the clinic. You hear other kids yell ‘no’ and ‘stop it’. They are scared and tired. How much we parents want to yell too…” – Jackie, mother to a 3yr old Rb survivor.
Zest: “It means with great enthusiasm and energy. Nothing can stop my little grandson from living his energetic life with zest. Nothing changes the abundance of love and life that fills me as his energy continues to shine in my life. Family support and love is all they need.” – Gloria, grandmother to an Rb survivor.