Cookies for Kids’ Cancer Blog

Tough Cookie Levi

Filed under: kids fighting cancer — The Good Cookies @ 10:04 pm September 27, 2016

As Told by Levi’s Mom… 

Whenever anyone met Levi as a newborn, they always told me how beautiful his eyes were. I couldn’t help but agree. He has my husband’s eyes—deep blue. They draw you into his wonderful soul.

Around his three-month checkup, I noticed Levi had a little bit of a lazy eye. His pediatrician told me there was no concern that she could detect. Still, she referred us to an ophthalmologist to discuss any lazy eye concerns. I made the appointment a week later.

On April 20th, 2015, I was rushing to get both kids and myself ready. The dogs were being obnoxious. I spilled my coffee. I couldn’t seem to get in my groove. It was a terrible morning, and I just wanted to get the day over with. Once we got to the ophthalmologist, my daughter found some toys for her and her brother to play with. She was good at distracting Levi. Once we went back to a room, the doctor looked at his eyes briefly and asked if I thought he was able to see out of his right eye. I was a little shocked and said I thought he could see fine. He brushed it off and told me he wanted to dilate his eyes and look a little deeper. Once the drops were in we had to wait 30 minutes for them to kick in.

My mind was running, how could I have a blind baby? How could I not have known? How did this even happen? I mean, I didn’t even know for sure if that was the problem, but why would the doctor have asked me if Levi was able to see anything? A little confusion, but I knew everything was going to be fine.

My daughter led the way to the room. She always likes to be the leader. I sat on the chair with Levi in my lap. The doctor turned the lights down and held up some toys to guide Levi to look in various directions. He was holding up these different items. They almost looked like crystals. He was looking through them to see Levi’s eye. This went on for about 3 minutes. It felt like an eternity. He turned the lights on and got pretty quiet.

“Does retinoblastoma run in your family?”

I froze.  All I heard was “-blastoma.” I know that means cancer.

“…no?”

“Well, I believe Levi has it, and he needs to be seen right away to figure out the treatment options.” 

I looked down at my four month old, calmly chewing on his teether. I cried, an ugly cry. My daughter ran up to me with tissues, rubbing my arm and telling me everything was OK. I was worried about Levi having a lazy eye, about him being blind. How I wish that was the problem, and it wasn’t cancer. Why was I so mad this morning? Take me back to that chaos. Throw all the nonsense and annoyance on me and just take the cancer away. There was so much I took for granted. Why does my baby deserve a diagnosis? Put it on me instead.

Long story short, Levi was diagnosed with bilateral retinoblastoma. He had tumors in both eyes, but the ones in his right eye were fairly large. He had 5 rounds of chemotherapy, and he has had countless rounds of laser treatment to destroy the tumors. He is still fighting, and they are still watching the tumors to look for regrowth. He needs MRI’s every 6 months to watch for any activity in his brain. All in all, he is healthy. 

Retinoblastoma can be detected when you take a picture with a flash. If a child has retinoblastoma, a white glow from the pupils will appear in the photo (see photo of Levi, above right). A lot of parents aren’t aware of this, and they go years without noticing. When this happens, the child will most likely lose their eye. We got lucky, and we have been able to save Levi’s eyes. All I can hope for now is that we can continue to fight off the tumors and not let them win. Levi does so many things, all the things a “normal” 21 month old does. However, the worry never goes away. Childhood cancer is always in the back of my mind whenever he doesn’t feel good.

This is a battle for the rest of our lives.

We need a cure. All the children need a cure.

levi

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