Knowing the Signs of Eye Cancer in Children Can Save Sight

St. Jude Children’s Research Hospital’s pediatric oncologist, Dr. Rachel Brennan, knows exactly what it’s like to be a so-called “helicopter mom” when it comes to your child’s health. In both her personal and professional opinion, Dr. Brennan believes that expressing your concerns as a parent is imperative. Having treated many children (including some of our very own “Glow” families!) and researching to advance retinoblastoma treatment, Dr. Brennan continues to contribute to the retinoblastoma community on a daily basis. Here, in a recent interview with Know The Glow®, Dr. Brennan shares with us everything she wants “Glow” families to know, from what she tells her patients, to her hopes for the future of preventing childhood blindness.

Dr. Brennan, what should parents do when they think they see a glow (Leukocoria) in their child’s eye?

One of the most important things to do when trying to determine what’s going on in a child’s eye is finding a specialist! A rare disease is not so rare to doctors like us because we’ve made it our life’s work!

When finding leukocoria for the first time, it can be scary to look on the internet for more information. If your child is in pain or is not acting normally, you should seek immediate medical care. However, if your child seems to be acting normally, I suggest you take a breath (but don’t delay too long), gather your thoughts, and create a game plan. The best place to start is with your pediatrician. This physician can evaluate your child, discuss your concerns, and then “go to bat” for you to get the referral process rolling.

Should parents follow their maternal/paternal instincts when seeking care for their children?

Don’t give up. Parents absolutely know their children best.
In almost every story in the clinic, parents are the ones who caught the signs – they just could tell something wasn’t right with their child. A glow is only one way that problems in the eye are found, so if you see other changes in your child’s eye (or eyes) that concern you, it is important to ask and make your voice heard. If your pediatrician says there is nothing wrong, you might still be worried. I understand, I am a parent myself. If you see a glow, you should not give up until you have a dilated exam conducted by an ophthalmologist – someone who is specialized to look in the back of the eye when it is dilated. There is no substitute for a trained eye specialist evaluating your child – if you see a glow, you need a dilated eye exam, period!

What is the one thing you always share with your patients’ families? 

My expertise is with cancer, specifically cancer in the eyes of young children. Even if the disease is advanced inside the eye, most cases of retinoblastoma are confined to the eye, and in those cases, it is a curable disease. With this in mind, I always let parents know that we are a team and I will always be thinking about their child as a whole person, not just an eye! I am fortunate to have a very close working relationship with our ocular oncologist, and families see us as their TEAM, not as a single doctor directing care. As a pediatric oncologist, there are two very important pieces of the puzzle to consider: I want to get each child safely through their upfront therapy, and I want to ensure the best outcome to give them the best quality of life possible. My goal isn’t to get a child to his or her 5th birthday, but rather to a celebration of 105+ years of life.

After seeing so many Retinoblastoma cases, what do you find is the biggest challenge for these families and what advice do you have for the parents of new patients to overcome this?

When speaking with new patients, I make it a point to let these parents know that retinoblastoma is a rare disease and that nothing they did or did not do was the cause of it.

The biggest challenge is really during the first week of diagnosis –hearing that your child is diagnosed with cancer and deciding on the treatment plan.

Therapy and treatment decisions are not made lightly, and that’s why having a strong support system in place is so important, not just your medical team, but also from within your home and community.

Parents must really feel like they are a part of their medical treatment team! Usually at diagnosis, the child is running around and functioning just fine. Agreeing to any form of treatment or intervention may be hard to wrap your mind around when your child appears totally normal. Treatment decisions are very difficult to make, and the value of the family feeling as though they are a part of their treatment team is immeasurable.

Finding a community like Know The Glow® or other groups where you can all support each other is also important because the journey doesn’t end when the treatment does. Your child is a SURVIVOR from day one.

Where do you hope your research takes you next?

I’m working to reduce therapy for smaller tumors and further improve therapy for advanced cases. We do a very good job in treating the earlier cases, but we need to work on finding new treatments and new ways to improve therapy for tumors in the advanced cases. The key is to understand the science behind the drug and the technique before implementing it on a child. My research and lab colleagues understand the data they provide will shape our clinical approach to children. We have a very close relationship with them, so I can feel confident in taking a new drug or technique into the clinic. This was how we were able to be successful with topotecan in our last clinical trial. My hope is that we will be able to identify a drug that can better target only the tumor cells, which would reduce the effects on other healthy cells in the body. I work closely with our ocular oncologist, Dr. Matthew Wilson, and we are trying to better understand how to safely give a higher dose of therapy directly to the eye – again sparing the other healthy cells in the body.

We need to make sure that we treat the whole patient. If the disease spreads outside of the eye, it’s a whole new monster. It requires much more therapy, and the outcome is more uncertain. This cancer can still take a child’s life, and we cannot stop until all children can be cured.

We also need to find ways to make new drugs and new techniques available worldwide. Our work isn’t going to end at our borders. What we are doing can also positively impact others around the world.

As a mother and as a doctor, what is your number one hope for the future of preventing childhood blindness?

Hope #1: Creating therapeutic and supportive care interventions

These children are amazingly resilient, and their eye diseases do not keep them from living their lives. Patients with only one eye affected by cancer have the potential for normal vision in the other eye and amaze us every day – as gymnasts, wide receivers, etc. (They just need to wear their glasses to protect the healthy eye!) However, because we deal with cancer that can affect both eyes and result in “low vision,” we need to improve our ability to provide low vision resources and rehab to our patients, particularly in the critical first years of life as their brains develop. My hope is to improve therapeutic interventions so the outcome is saving an eye WITH better vision. In parallel, we need to improve our early childhood interventions to help patients make the best use of their vision from an early age. These children are not defined by the limited vision that they have. They can still do anything they want to do!

Hope #2: Raising awareness

We need to raise awareness so children can be diagnosed early. The earlier you catch and treat retinoblastoma, the better the chance we have to save the eye and hopefully to save useful vision.

Hope #3: Providing hope

As a parent facing a diagnosis of cancer in your child, I want you to know there is hope. I want you to know there is a treatment team that supports you and your child. I want you to know that your voice is listened to and how important you are on this journey. I meet with families as often as necessary to make sure they have the same information I have after the initial diagnosis. I want to ensure that they are well informed without being overwhelmed, so families can make the best decision possible regarding their child’s health. And, because of organizations like Know the Glow® who connect families with similar experiences, I want you to know the hope we all have for these children who face cancer and don’t just survive – they THRIVE!

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