Retinoblastoma: Our Family’s Battle With A Rare Childhood Cancer

Last updated on December 2nd, 2023 at 11:41 am

One Thursday evening last year I got a frantic call from my sister-in-law. She had taken a picture of my 2 year old nephew Tristan using a flash and noticed that while one of his eyes had the typical red-eye effect the other was milky white colored. She had done what all moms do. She went to the internet. She researched. What she found was dire. As she recounted to me the different things that it could be we both tried to stay calm, but her gut instinct was telling her that something was wrong. She rushed him to his pediatrician the next morning and followed up with an Ophthalmologist on Monday, and by Tuesday pediatric oncology specialists were saying that it was retinoblastoma (a rare form of childhood cancer of the retina) and that they wanted to remove his infected eye right away. When we got the call that he did in fact have cancer it was devastating. I kept looking at my own 2 year old twin boys thinking, how could the universe inflict something so terrible on such a tiny and innocent creature?

My sister-in-law told us that they were faced with two terrible choices; remove his infected eye right away to stop the cancer from spreading or they could take their chances on a second opinion. With cancer every single minute counts. Taking a time out to find other answers can be a gamble, because time is most definitely not on your side. One of Tristan’s doctors mentioned that some families were getting great results from a specialized clinic at Memorial Sloan Kettering Cancer Center in New York. He said that if she was going to get a second opinion from anywhere that would be her best option. A few days after the diagnosis they hopped on a plane from their home in Wisconsin and headed to New York. They wanted to make sure that every viable option was explored and that Tristan received the best possible, and most effective treatment. What followed was an entire year of traveling to New York once a month for a weeklong stay that involved a myriad of tests and sessions of intra-arterial chemotherapy under sedation. Through it all Tristan was the bravest and most resilient of all of us, able to see the fun and beauty in the smallest moments, even when he didn’t feel good.

That year of treatment was hard on the rest of us. Really hard. Tragedy has a way of illuminating the true colors of people. Some who you thought you could always count on fail you miserably, those relationships changed forever. Thankfully there are also others who surprise you utterly with their kindness and generosity. My sister and brother-in-law found a sense of community with parents of other patients, forged lifelong friendships and stood back amazed as even passing acquaintances stepped up to help their family in any way that they could. Friends cared for Tristan’s older brother like he was family, making sure that his routine was not interrupted while the rest of the family was away in New York for Tristan’s treatment every month. Tristan’s daycare center held a fundraiser in his honor to help pay for medical costs, friends and other parents at the daycare center also pitched in with meals and whatever help that they could provide. Lastly, the Wisconsin Make A Wish Foundation worked tirelessly to make Tristan’s wish of going to Disney World to see Mickey come true.

The result: after a year of vigorous treatment Tristan is officially in remission and his doctors were able to save his infected eye. Though his vision is very limited in that eye due to his retina having been detached for a long period of time it is nothing short of miraculous that he can see at all. Doctors believe that with therapy his vision may improve over time.

I have found that my nephew’s cancer has changed us. It was a wake-up call that reminded us what was most important in this life: family. We now make more time for each other, despite the geographical distance between us. I now have a true understanding of how fleeting life is and I never want to look back with regret having let opportunities for snuggles, random Facetime dance parties or early morning baking sessions slip by.

More About Retinoblastoma and What To Look For

Retinoblastoma is a rare form a cancer of the retina that is typically seen in children under the age of 5. Approximately 300 children are diagnosed with this type of cancer every year in the United States alone. There are two different kinds of this type of cancer; hereditary and non-hereditary. About 40% of patients have the hereditary form and because of this siblings, and later their own children will need to be watched closely through the age of 5. You can find this out with genetic testing which most if not all centers that treat this disease provide. With this form patients most often have the tumors in both eyes and have a greater chance of developing other cancers of the eye and the rest of the body throughout their life (St. Jude).

If you notice that one or both of your child’s eyes have a milky color rather than red-eye when using flash have them checked by your regular ophthalmologist right away. They have specialized equipment that is better able to see in and behind the eye than the basic ophthalmoscope that their pediatrician routinely uses. If the ophthalmologist finds something in their exam that concerns them you will be referred to a specialist for an exam that is conducted under anesthesia while their eyes are fully dilated. If a tumor is found they will next go through an MRI under sedation. This test checks to see how much the tumor has grown and how far it has spread. Following this last test your doctors will formulate a course of treatment to be started immediately.

The most important thing is to make sure that you routinely have your children’s eyes checked as part of their yearly well visits. If this type of cancer is caught early and treated vigorously there is a 95% cure rate and about 70-80% of the eyes themselves can be saved. If left untreated the cancer will most often spread to other parts of the body and become fatal (St. Jude).

Destiny Effertz began following Twiniversity’s Facebook page in 2013. She quickly fell in love with how the page created a feeling of community while at the same time providing support to thousands of parents and soon to be parents of multiples. She began writing for the website in the spring of 2014 carrying on the tradition of providing advice and support to parents. She is a mother of 3 boys; twin 3 year olds and a 5 year old. She worked for many years as a civil litigation paralegal prior to having children. Now she spends her days formulating new pie recipes, throwing epic kid parties, planning family vacations, and planning and executing pirate adventures and trips to far away planets with her boys.

Are You a New Twin Parent?

Check out Natalie Diaz’s book:
“What To Do When You’re Having Two
The Twin Survival Guide From Pregnancy Through the First Year”

In What to Do When You’re Having Two: The Twins Survival Guide from Pregnancy Through the First Year, national twins guru and founder of Twiniversity (and twin mom herself!) Natalie Diaz provides a no-holds-barred resource about life with twins, from pregnancy and birth all the way through your duo’s first year of life.

Accessible and informative, What to Do When You’re Having Two
is the must-have manual for all parents of twins.

Buy Now

Retinoblastoma: Our Family’s Battle With A Rare Childhood Cancer

Have you taken your expecting twins class yet? We offer a great class on demand so you can take it on your own schedule! There are so many video modules covering everything from your twins’ baby registry to your first week at home with twins! Sign up today to get started before your twins arrive.

Need some twin parent friends? Get the support you need with a Twiniversity Membership. Benefits include a monthly twin parent club meeting on Zoom, access to a private Facebook group just for twin parents, and a video library of twin parenting lessons. Visit Twiniversity.com/membership to join today!