Retinoblastoma: Survivor Guilt

Retinoblastoma survivor guilt
I wish every story had a happy ending.
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Our St Jude story began in Conway, AR.

Katie had just started crawling and would get stuck on the left side. She would crawl into a chair leg, cry, then do it again. When we played peekabo she would panic if we covered her right eye and not respond if we covered her left. She also developed a nursing preference. During the day she only liked nursing on the right and at night on the left.

We took her in to the doctor for her shots at 6 months, expressed our concerns, and were told by the nurse that the doctor would do an eye exam at 9 months. We were not satisfied. My husband got a hold of the local eye doctor who fit us in right away after hearing our concerns.

He asked us a number of questions trying to find a reason why her retina had detached. Had we dropped her? Had she ever rolled off the bed? The office was closed, we were the only ones there. The nurses kept coming up to us admiring our baby but with a far away sad look in their eyes. It should have been a clue. We left grieving that she was blind in one eye, no idea what really lay ahead. We were sent the following day to a Retina Specialist in Little Rock.

After examining her twice he sat us down and explained that he had recently attended a seminar conducted by Dr. Mathew Wilson on Retinoblastoma. Until today he had never seen a case. It was his desire to send us to St. Jude where Dr. Wilson practiced. In fact his nurse was on the phone as we were speaking making all of the necessary arrangements. He was not comfortable giving us a diagnosis but he knew that we would be in the best possible hands to diagnose and treat, if in fact it was Retinoblastoma.

I believe my brain stopped functioning at this point. Perhaps it was shock.

As we numbly walked to our vehicle, trying to be the optimist, I blurted out “well it could have been worse, it could have been cancer.” My husband in his kindness simply responded “sit down, we need to talk.”

Retinoblastoma (RB) is a rare cancer accounting for 3% of all childhood cancers.  Retinoblastoma is usually diagnosed before a child reaches the age of 3. For more information please visit www.StJude.org It is many times detected first through photographs that display what is called a “cat’s eye”.

That was a Friday. The next few days were a blur as arrangements were made for our son, friends were told, employers were notified, and we packed. Monday we arrived at St. Jude. I don’t remember much about the first week. I remember I was always cold, strangers offered me kind words, big medical words were said that made no sense, and a good amount of ice cream was consumed.

I will never forget being told it was RB and what our options were.

Dr. Galindo and Dr. Wilson took us into a room lined floor to ceiling with toys. We sat and discussed options. I did not understand anything they said except the words Chemo, Radiation, Enucleation. I had thought up to this point that Enucleation was the last resort but here we were discussing it as if it was in fact the best route. In the end it is what we chose. The tumor in her eye had created enough damage that even if the eye was saved the chance of her being able to see from it was slight.

We have been part of the St. Jude family for 8 years now. Our story is not unlike others. It was a whirlwind of emotions that leaves me raw thinking about it, even now.

As our visits to St. Jude have moved further apart (now only once a year) we have become more removed from the community of fellow patients. Our visits feel more and more like we are on the outside looking in rather than active participants.

On our 5 year anniversary visit I was beaming. Holding my miracle in my lap I shared with a roomful my ecstatic joy. We could finally say CANCER FREE. I did not say it to be hurtful. And I know the responses only came from a place of pain. My joy was quickly tempered by “That’s nice. My baby will never be able to say the same.” Since that day our visits have not been the same.

We’ve lost track of friends, our schedules shifted out of sync and never realigned. We haven’t seen Dwayne at the ice cream counter in two years, but Katie still asks for him every time we come. He moved on. Children have died. Katie has grown.

One visit a family was pointed out to me. I was encouraged to befriend them. Their story was similar to ours. She was a Chili’s employ like John had been. Their son had a rare disease like Katie. They were from Arkansas, near us. Unlike Katie their son was given a timeline of only a few months to live.

I stepped onto the elevator with them. They did not know me but I already knew their story. Their son was the same age as our son, wearing the same pajamas he wore nearly every night. I opened my mouth to introduce myself and words did not come. Uncontrollable sobbing took over. She began to offer me words of comfort and I ducked my head and rushed for my room.

This trip we joined in the festivities at the Ronald McDonald House. There were crafts, a magician, dinner and birthday cake. We made our way outside to enjoy the coolness of Memphis after the rain. Katie said she felt overwhelmed by the noise inside. As we sat alone on the damp chairs she began to share how sad she felt. She’s been coming her whole life and today she became aware. She grew up a little more.  She asked why if she was cancer free we continued to come. And in the midst of her sadness for the children around her, children we were discovering were relapsing, I had to explain to her that yes your cancer returning is a possibility.

I am raw, broken inside when I leave here. All of the emotions I felt on our very first visit — the fear, anxiety and sadness — flood back. And yet I know we are so blessed to be a part of St. Jude and the young lives we meet here.

My children have been shaped into caring curious individuals. Handicaps of others do not deter them from making friends or asking questions. They do not shy away from those who are different. Katie wants to be a doctor to make a difference in the lives of other children with cancer.

How can I feel broken and blessed all at once?

 My heart aches for the suffering of these children and the heartache of their families. It is full of guilt at the joy I have when I look at my own daughter.

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