Giving thanks for early detection of retinoblastoma

Patient's Name: Abel D.
Parent's Name: Annette D.
Home Town: League City, TX
Current Age: 1
Date of Diagnosis: June 7, 2019 (10 months old)
Diagnosis: Retinoblastoma

How did you find out that Abel had retinoblastoma?

We had noticed that his eye was turning out. Then I took a cell phone video of him with the flash on, and I could see a glow in his eye that wasn’t red. I looked it up and there was a Facebook group called Know the Glow. They said if you see a glow in your child’s eye that’s not red, get an eye exam with dilation. So, we took him to an optometrist, and she was able to see something in the back of his eye. She referred us to Texas Children’s Hospital and we got an appointment really fast, within a couple days. They did an ultrasound and saw a tumor. Pretty soon after that, it was confirmed to be retinoblastoma. We were lucky that we found it as early as we did. He was a baby. Everything is wobbly and uncoordinated at that age, you just assume they’ll grow out of it. And of course they can’t talk or tell us something’s going on with their vision.

How did you take the news?

It was scary to find out he had cancer. At the same time, it was kind of a relief to move forward and start helping him fight it. It was a whole bunch of mixed emotions. Up until his first treatment, even after it, I was in shock. I was like, ‘I can’t believe this is happening. Is this real life?’

pic How has the treatment been going?

There’s different things you can do, depending on a few things. There’s removing the eye, systemic chemo through a vein, arterial chemo, or injection. We had an MRI and it showed that the cancer was in two layers of his right eye. We decided to do systemic chemo, just in case the cancer had spread beyond his eye. At first they didn’t think it was anywhere else, but we have since found one tumor in his left eye. We also found out that has the genetic variant of retinoblastoma, which means he will be more prone to getting tumors in both eyes.

We just recently finished his 6th round of chemo. The tumors shrank quite a bit after the first round. Since then, they haven’t shrunk much but they also haven’t grown. We are going to have laser therapy in December and then determine next steps.

How are your spirits these days?

The very first day he was diagnosed, we were sitting in a waiting room, and this woman started telling us about her child’s positive retinoblastoma experience. Her daughter was 4 and she was perfectly fine now. It gave us a lot of hope. We’re still really hopeful. He’s a strong fighter. Abel has been paving the way for us. He’s acting normal, so we’re acting normal. The one thing that’s definitely not going to help him is parents who are constantly worried and freaked out.

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