Jackson’s retinoblastoma story

Two parents holding child outside. Photo of same child smiling with a pacifier in a hospital waiting area.

When he was 9 months old, Jackson was diagnosed with bilateral retinoblastoma (a type of eye cancer that begins in the retina). We sat down with Jackson’s parents, James and Kaitlyn, to learn more about their family’s story.

Can you share more about Jackson’s diagnosis?

James: We knew that Jackson was at risk of developing retinoblastoma before he was born. My father was completely blind from the same type of cancer, and I was diagnosed when I was a baby but I was fortunate enough to keep both of my eyes. We didn’t know for sure if I carried the retinoblastoma gene, but we knew there was a good chance. We spoke about this possibility at length with our primary care provider and the hospital where he was born, asking repeatedly for early eye exams. Despite our advocating for it, an ophthalmology screening was never conducted.

The whole time, we were on the lookout for signs and symptoms. We started noticing water eyes, redness, irritation and a white reflection around the eye’s pupil. The reflection is a common presenting sign of retinoblastoma.

Kaitlyn: James called OHSU Casey Eye Institute and tried to make an appointment, but things got held up when we learned we’d need a referral from our primary care provider – and they said that could take a few weeks.

James: We just had a gut feeling about this so I told them, “If my son has cancer, I don’t want to wait that long.” The team at Casey Eye Institute contacted our provider directly and was able to make it happen. The very next day, we drove up from Salem and they diagnosed him with bilateral retinoblastoma – bilateral meaning he had the disease in both eyes. Later, they also diagnosed him with a detached retina.

Once you received that diagnosis, what was next?

Child playing with an IV cart.Jackson had six cycles of systemic chemotherapy. His right eye was much worse than the left with one tumor measuring about 8 millimeters (about the size of a grape). The team at OHSU decided to do intra-arterial chemo to that eye, and that treatment shrank the tumors down significantly. Eventually, the tumors in the right eye weren’t responding so we, along with our care team, made the decision to take the eye out.

We spent a lot of time in Portland. Jackson had a PICC line placed for about two months before he had his port placed. When he was undergoing the intra-arterial chemo, we had to stay overnight for observation. There were also a couple of times that we had to drive up when he developed a fever.

Jackson is 21 months now and continues to see his team at OHSU. We’re monitoring his other eye, but so far there hasn’t been anything concerning. He has an exam coming up and he’s getting his prosthesis soon, which we’ve been looking forward to for a while! He’ll also get his protective eyewear soon.

When Jackson was first diagnosed, a lot of us were really upset. But in his own Jackson way, he would kind of tell us that he was OK and was going to be OK regardless of what happens. He’s proven that to us with his resiliency.

Smiling child wearing bunny ears headband.

He’s really happy and very silly. He keeps everyone – including his doctors – in high spirits. He’s a character and he is so loved – and he loves to love right on back by showering people in hugs and kisses!

Is there anything you’ve learned along the way that you’d like to share with other families?

Don’t be afraid to advocate for yourself and your child. If you have a gut feeling and think something might be wrong, keep pushing for that. Even if it turns out to be a false alarm, it’s not a waste of time and you will feel better having checked.

If your medical provider isn’t responding to your concerns, seek out a second opinion. If Jackson’s doctors would have listened to us in the beginning, perhaps he wouldn’t have lost his eye.

Smiling child sitting in hospital crib.

We’ve made it very clear that we don’t go to any other hospital but Doernbecher. All of the doctors, nurses and staff at Doernbecher and Casey Eye Institute made the experience so much easier for us just by being there. They’re some of the best around – and we’ve been to a lot of places.

There are a few individuals on our care team that we want to thank, including Dr. Sue Lindemulder and Dr. Alison Skalet. Two nurses that we really love are Hem/Onc nurse Jennifer Hinkle and Casey Eye Institute nurse Lucas Friedler. Jennifer is so amazing with Jackson and with kids in general, and Lucas helps out in the pre-op area to help make kids more comfortable.