Diagnosis: Retinoblastoma
On Halloween 2013 my little 3-year-old Spiderman was having trouble with his mask. He kept moving it and we kept moving it back to straighten it. It was a wonderful Halloween for Tristen (age 3 1/2) and his little sister Dakota (4 months). When we looked at the pictures, there was a white “Glow” in Tristen’s left eye. I thought it was camera glare combined with his mask. Little did we know then this “Glow” was a cancer called Retinoblastoma causing him to readjust his mask.
At Thanksgiving 2013, we visited the family and took a bunch of pictures, the same as we do every year. I continued to notice a white “Glow” in Tristen’s left eye. I mentioned it to his dad who told me “don’t worry about it.” And that is exactly what I tried to do. But, I continued to take pictures and couldn’t help but notice this white “Glow” that I could not explain.
When Christmas came around I was starting to notice a small shimmer in his left eye without the help of the camera. It continued to show up in almost all photos. I was starting to really get worried so I mentioned it to my mother. She told me that mother’s intuition is best and I should get him in to be seen.
After Christmas, I started to look for a pediatric optometrist (at the time I didn’t know there was a difference between optometrists and ophthalmologists). I finally found someone who would take kids so young but they could not get him in until February. I took the February appointment and felt a little better since he had an appointment scheduled.
On December 29, 2013, my family went to a walk through a Christmas light display at the zoo. I continued to see this same “Glow” and the worry swelled up again. My husband reassured me that he has an appointment coming up and he appears fine otherwise.
On December 31, 2013, Tristen and Dakota both woke up with symptoms of an ear infection. I took the day off and got them both in to the pediatrician. She had no reason to look into their eyes and I did not mention anything because I knew he had an appointment scheduled.
Later the same day, Dakota was down for a nap and Tristen was playing flash cards (he already knew all his letters). I was trying to keep him happy so I decided to try to “make the game harder” and covered one eye. I found that every time I covered his right eye he could not tell me the letters that he could tell me without it covered. This made me realize he could not see from his left eye.
I became very upset and called the pediatrician to get him in. They were going to be closed the next day due to the holiday but scheduled him for January 2, 2014. I then did the worse thing a mother can do—I did on online search of his symptoms. I found some worst-case scenarios of what this “Glow” and not being able to see could be. It scared me.
On January 2 we went to the doctor’s appointment. She looked in his eyes and told us right away that there is something in there that shouldn’t be. She referred us to a pediatric ophthalmologist who could get us in right away.
We went directly from one office to another. The doctor we saw had terrible bedside manner. He took a look in Tristen’s eyes and told us that he has Retinoblastoma. He said we would have to remove the eye. I became very upset. The only thing I could think about was, “Is this really how you tell a mother that her son has cancer?” Thankfully, he had a colleague who specializes in Retinoblastoma, and she was able to see us later that afternoon.
Later that afternoon we saw his ophthalmologist for the first time. Amy Leverant saw us as her last patient of the day and stayed late to look into Tristen’s eyes and answer any questions we had. She was able to explain the process and the next steps to us. Even though we were still very scared, she helped to calm our nerves.
A few days later, Tristen had an ultrasound of his eye. He then had an exam under anesthesia and an MRI a few days after that. This was another late night for Dr. Leverant since she stayed late to do this exam and sit to talk with us. We looked at the test results. We were told he had a class D tumor with lots of seeding and that his retina was starting to detach.
After looking at everything we had in front of us we made the hardest decision of our lives. We decided to remove his eye. His left eye was removed on January 10, 2014.
About a week after his eye was removed Tristen developed an infection around his orbital implant. We spent a week in the hospital trying to clear that up. While there we received good and bad news. We learned that his genetic testing came back as non-genetic (we did not pass it to him) with mosaicism (a mutation that took place in infant development that he may or may not be able to pass to his kids). We also found out that he will need chemotherapy.
Five days after being released from the hospital for the infection we were readmitted to the hospital to get a PORT-A-CATH® put in place and start his first round of chemotherapy. Tristen would go through a total of six rounds of chemotherapy. He lost all his hair and had to have several blood transfusions.
During this time we were surrounded by lots of friends and family to help us. I started to reach out to others who have also been through what we were going through. I was able to meet others going through the same thing, and I stay in touch with many of them still today.
On July 28, 2014, Tristen was labeled as cancer free! This was the most joyous day. He turned 4 on August 27, 2014, and we had a large birthday/cancer free celebration.
Now Tristen is 5 years old and in kindergarten. His teacher says that he is advanced in school and has lots of friends. He is doing great. He is living a normal, happy, healthy life. If you looked at him now you would never know that he is a Retinoblastoma survivor with only one eye.
Update: July 29, 2019
Tristen is now turning 9 years old this next month and starting the 4th Grade. Tristen enjoys science, video games, and running. Tristen has outgrown his first eye and had a second eye made. He has grown in his confidence when he tells someone about his cancer. He is doing great and living a life of a normal, smart young kid. We could not be any prouder of him.”
