Dealing with cancer: our personal story

Nidia Sepulveda
Staff Writer

May 2014 was when our world was thrown off balance. My husband, our then two-year-old son Ezequiel Jr. and I were outside in our garage when I noticed a yellowish reflection coming off my son’s eye whenever he faced the garage light.

At first, I thought it was just the natural reflection of his eye. It wasn’t until I leaned in closer to him and shined my cellphone light into his eye when realized that it was cloudy, as if he was blind. My heart began to race and told my husband.

We discussed that maybe it could be a cataract or some sort of trauma to the inner part of his eye due to a car accident he was involved in with his dad in April 2013. We decided we needed to make an appointment with a pediatrician as soon as possible and scheduled one for the next day.

As a mother, I quickly began to research what it could be and I came across many things such as cataracts, trauma to the retina from whiplash, glaucoma and then the one that set off my intuition; Retinoblastoma. As soon as I saw photos of Retinoblastoma, I knew that was what we were dealing with and I lost it.

I spent the whole day crying and the whole night awake thinking if I was crazy. Am I believing things that are not true? I felt in my gut that this was what my son, what we as a family were facing. The day of his appointment came and I watched as the doctor analyzed his eye, quietly asking us questions.

I explained to her what I thought it could be and she said she was not sure what it was and she needed a second opinion, so she brought in another leading pediatrician in the clinic.

They both talked back and forth and all I could do was hold my son waiting for an answer while my heart trembled in fear to hear the words “Retinoblastoma”.

The doctor told us she needed an ophthalmologist to see him as soon as possible to rule out anything serious. The very next day, we were in Minnetonka at a children’s eye clinic, and the same thing happened; quiet analyzing of my son’s eye and various questions.

The doctor told us two things: it could be trauma to the interior part of his eye due to the car accident or cancer. My heart sank. My motherly instincts were right.

I wanted to hold on to the first diagnosis of trauma but I knew this was way more than that. The eye doctor got us scheduled to see one of the leading children’s eye specialists in Minnesota within two days.

Those two days leading up to the appointment consisted of periods of bawling and praying and wondering, “Why my son? Why cancer? Why at such a tender young age?” I decided for myself, that in order to beat this I had to be strong for my son and show no fear. If mommy was brave, he would be brave.

I gave myself one last good cry, one good long prayer, and set off to his appointment in Minneapolis. The drive seemed never-ending and the silence in the car was numbing. We finally arrived and waited for my son’s name to be called.

The moment came and we were shuffled into a room. She, as all previous doctors, began to ask questions and asked to do some tests to test his vision. She handed my son a big board with shapes and covered up his cloudy left eye and asked him to point to certain shapes and he pointed.

When she covered up the non-cloudy eye he squirmed in fear and she took away the board. He couldn’t see anything. It’s as if the lights had been turned off. My heart trembled, my legs began to shake, and my heart raced as tears began flooding my eyes.

She continued to analyze him and finally had a diagnosis: Retinoblastoma. My husband began to cry as I sat in shock, no tears no words. All I felt was the trembling of my legs.

The doctor said that she couldn’t see how far back the tumor was or if it had entered his optic nerve since it was too large. She told us the eye would need to be taken out as soon as possible. I told her to do whatever she needs to do to save my son’s life.

I knew then and there that this would not win. Who was this Retinoblastoma to come and take my child and overtake my family with fear and despair?

This was war we would win at all costs. Two days came and went and my son was sitting on a hospital bed ready for surgery as we mourned for his eye. My son may have lost his left eye but he has his life which is all that mattered.

After surgery, the doctors had a meeting with my husband and I and told us that, due to the size of the tumor and not knowing yet how far the tumor was or if it entered the optic nerve, that chemotherapy would be needed to make sure that any cancer cells in his body were eliminated.

We were told that one of the chemotherapy medications could cause a secondary cancer and we had to sign a waiver understanding this. Here we are thinking our son is “cancer free” now that his eye is out, but now we need to decide on two options that could possibly give him cancer again.

We decided to go forward with the chemotherapy. I remember always watching the St. Jude commercials and flipping the channel. During this time, whenever one played while we watched TV I couldn’t help but lose it.

I knew what those parents felt, I understood it all, their pain was my pain and we shared the same heartache. My son was blessed to live and survive Retinoblastoma. He endured six months of chemotherapy and came out winning like the Retinoblastoma warrior that he is.

My son has been cancer free for three years and he is now six years old. He has a prosthetic eye that is unnoticeable unless mentioned. Those who know cancer know that it allows you to appreciate life and see it in a different light.

It allows you to slow down and not take things or people for granted. It is a second lease on life for the person involved and those around them.

My heart is with all the parents holding their babies or loved ones in a hospital during therapy. As I write these words I pray for them and keep them close to my heart today, tomorrow and until my last breath. For “Cancer is only going to be a chapter in your life, not the whole story” (Jose Wasser). Thank you for reading a chapter of my son’s story.

Feature photo by Nidia Sepulveda | MSU Reporter.

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