Friendships Through Retinoblastoma:
a vital gift on the path to healing.
Saturday August 4, 2018
Megan Santos reflects on the many cherished and healing friendships formed before, during and after her daughter’s treatment for unilateral retinoblastoma.
The picture I posted online showing Rowan’s white eye reflex.
When Abby first asked me to write the blog in celebration of World Friendship Day, I did not hesitate to say yes. I have known Abby since 5 days after my daughter was diagnosed with unilateral retinoblastoma. She was already giving me a world of knowledge at the time although I was completely overwhelmed.
Originally, Abby proposed I write this with Maddie. Maddie is the woman I credit with diagnosing Rowan’s retinoblastoma. Rowan was a miserable baby. She screamed bloody murder from the day she was born. We visited her pediatrician at least once a week. She suffered from acid reflux, infant allergies, colic… She even had a clogged tear duct. Her doctor, however, never turned off the light to look in her eye.
Fast forward to 2008, 11 months and some weeks after she was born and a move across the country to Florida. I started noticing only her left eye was changing colors. At that time, I belonged to a group online through babyfit.com. This is where I “met” Maddie. She was great, worldly, charismatic, and our daughters were born on the same day. One day, I posted on our message board about the changing eye color. I got many answers from, “Well, David Bowie has two eye colors” to “isn’t that neat?!” At that time, Maddie asked me to post a picture. I dug our camera out of one of our many moving boxes, took the picture and posted it online.
That is when Maddie noticed what I had never noticed – the white eye reflex, also known as leukocoria. She immediately messaged me personally. Unfortunately, I never saved the message, and since it was 10 years ago, it is no longer online. You can watch our story on Inside Edition below.
This began our real friendship. I will always be grateful to Maddie for her insight and bravery in sending that message to a near stranger. We are friends today although we still have not met. I hope to meet her within the next year after her big move to Canada with her family.
Earliest Friendships on the retinoblastoma Journey
I cannot leave out the many other friendships I have forged during the last ten years because of Rowan’s diagnosis. Back to Abby. Just a few days after Rowan’s diagnosis, I joined a listserve for families affected by retinoblastoma (this was before the Facebook group). I wanted to learn more about it, more about what to expect, what others were feeling. I felt so utterly alone. I heard from Abby immediately after joining (5 days after diagnosis). She answered my questions, gave me names of other doctors to get second opinions, and basically checked in on me and Rowan.
As the years have passed, I know that Abby loves and cares for ALL our babies. Our babies are her babies. She has one of the biggest hearts of anyone I have ever met. She may be busy, overwhelmed herself, going through her own medical procedures, but she always has time to field a question or just listen. Rowan and I were lucky enough to meet Abby in 2015 when Abby had a few days break in St Pete Beach.
Rowan had an amazing time that day. She knows how much Abby does for kids and parents like us. We are blessed to be able to call her a friend. A stranger who accepted us at the hardest time of our lives. For that, I will be forever grateful.
Megan, Rowan, Abby, her guide dog Annie, and Ffion – a fellow retinoblastoma survivor with whom Abby was holidaying in Florida.
Rowan’s Story Saves Other Children
Maddie and Abby are not the only forever friends I have met on this journey from across the ocean. In 2012, we met Harry Burden from Birmingham, along with his parents and brother, Roman. That year, we also met Brooke McClafferty from Derry, Northern Ireland.
Rowan and Harry
Rowan and Brooke
Of course, I have formed many friendships in the United States as well. Jennifer Loft is a fellow Rb Mom from Florida. She and I had many late night conversations regarding treatments, prosthetic eyes, doctors, and follow ups. We even met up at Retinoblastoma Week at Camp Sunshine a couple of times.
If you are the parent of a child with retinoblastoma and have not been to Camp Sunshine, I suggest you look into it. For one week in June, Camp Sunshine connects families from around the world who have all experienced retinoblastoma. At Camp Sunshine, the kids play with other kids just like them and there is so much for them to do.
As parents, we get to meet other parents, share our joys and pains in a safe setting. Rowan loved Camp Sunshine both times she went. Being the complete introvert I am, the format also worked for me and I made many friends that I still have today even though the last time we went was in 2013.
We made many friends at camp from all over the US as well as the world. Some we even got to see again when they visited Florida. Rowan became good friends with Cameron while they enjoyed Busch Gardens together! His mum, Angie Campbell and I shared our stories, our fears, and our thoughts on parenthood.
Rowan and some of the children from Camp Sunshine, 2013.
Friendships are Vital
When going through something like pediatric cancer, there is nothing more valuable than the friends you have and the friends you will meet. I have always found the retinoblastoma community to be welcoming and accessible. The friends we make when going through the hardest times of our lives see us for who we are. They accept us as we come, and more importantly, they understand.
There is no reason to go through treatment alone. There is no reason to go through Post Traumatic Stress alone. We are a family in that we all love our kids and our kids are all fighting or have fought.
I believe more needs to be done to bring families facing retinoblastoma together. I met a few friends while Rowan was going through treatment in Miami, but there was no group, no social worker, nothing to help bring us together to share our fears and understandings of this cancer.
Rowan and Cameron at Busch Gardens
The Healing Wisdom of a Child
It took me a while to become fully submerged in the online Retinoblastoma community. Rowan’s diagnosis took my breath away and the floor dropped from underneath my feet. I heard from other parents across the world as soon as her story broke, but it took a really special person to snap me back to some semblance of myself.
Grace was only 10 at the time she emailed me, but I cherish her message and will always remember it as the thing that brought me hope in my time of complete darkness. She may be in college now, she may not remember writing this email to me, but I will never forget. Grace, thank you for reaching out to me. Thank you for not being afraid to extend your friendship. I will love you always.
From: Mitch and Lori Padilla
To: Megan Claffey Santos
Date: Tuesday, September 16, 2008, 12:07 AM
Dear Mrs. Santos,
Hi my name is Grace Padilla and I am a Rb cancer survivor. I am ten years old and I have been cancer free for 8 years on October 29th. I was watching Inside Edition with my Mom who is on the rb list serv. We saw the story about your daughter Rowen. When I was diagnosed with cancer, it was also in my left eye. I lost my eye because of it. If you have any questions about depth perception or anything else, please contact me.
I hope your little girl is all right and doesn’t lose her eye. But if she does lose her eye, she will be ok
I’m here for you.
Living Beyond Retinoblastoma
Today Rowan is doing well. She has faced some bullying at school, but she fights it by educating her fellow classmates. She brings in her old eyes to share with her classmates and has also brought in a copy of Joey’s Special Eye, which was written by Grace Talusan, whose niece lost her eye to retinoblastoma.
In the last couple of years, I have distanced myself some from the retinoblastoma community. I feel it is time to try to move on with our lives and work through my Post Traumatic Stress by focusing on the future and not letting our past dictate how we live now. It has been an incredibly difficult journey, but I will never forget the friends I have made during this time in our lives. They are my family.