Surviving Retinoblastoma: Justin’s Story

Have you ever heard of retinoblastoma? I hadn’t either up until a few weeks ago. Retinoblastoma is a form of cancer that manifests itself in the eyes of young children. Honestly, of all the childhood cancers out there, a child getting cancer in his or her eye is something I never would have thought of as a possibility. That is, until it happened to the son of one of my best friends.

Erin and I first met at a neighborhood birthday party about four years ago. I can still remember that the party was in the summer, and that my son and her daughter were playing together in one of those plastic kiddie pools. I also remember that Erin had a tiny baby bump, and she told me that she and her husband, Adam, were expecting their second child together, a boy.

As I sit here typing this entry four years later, it’s safe to say that Erin has become one of my closest friends. My life is better because I have her in it. They say that you can count your true friends on one hand…and Erin is definitely on my list.

And Erin’s two kids? Well, I love them so much that I honestly feel like I’m related to them. And I’ve told you all before that I’m a self-proclaimed non-crier. When Erin told me that her three-year-old son Justin had been diagnosed with cancer, I couldn’t keep my composure long enough to leave her a coherent voice mail telling her I would do anything and everything I could to be there for her during this battle.

The best way that I can be a good friend to Erin now is by sharing her story, in the hopes that another family and child won’t have to endure the same heartbreak.

Justin’s Story, told by his mother, my dear friend Erin

 

About 6 months ago we noticed a strange reflection in Justin’s left eye.  It resembled a cat’s eye at night.  It had a translucent color.  It lasted for a second and we wouldn’t see it again for a while.  It happened a few more times but Adam and I thought it was just the way the light caught it.  We actually never said it outloud or discussed it until a few months back.  We thought nothing of it!

 

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Notice the white reflection in Justin’s left eye.

 

In March Justin’s left eye began to appear “lazy” at times, but would look perfectly normal the vast majority of the time.

We decided to have the doctor see him.  Before we could make an appointment we received a letter from Eastern Connecticut Health Network informing us that our pediatrician’s office was being closed and we should find a new pediatrician.  They gave us a list of names.  I called one and took the earliest appointment.

When I met our new doctor for the first time on April 18th I explained I was there because Justin’s eye appeared a little lazy from time to time.  I also showed him a framed 5×7 photograph of Justin where you could see a small white reflection in the corner of his left eye.  I figured I’d mention the strange white reflection we had seen a few times, somewhat concerned that he might think I was crazy.  He spent 10 minutes with us.  He shrugged his shoulders and said he wasn’t concerned about the photograph.  He shined a flashlight in Justin’s eyes and said, “His reflection looks perfect, but it looks like something might be going on with the vision in his left eye.”  I asked him to refer me to an eye doctor.  He found the name and number of an opthamologist in Glastonbury and told me to call them.

We took the first available appointment with the opthamologist which was April 29th, not really thinking anything of it.  I figured our little “buddy” would need to wear a patch on one eye to strengthen the muscles in the other eye or maybe he’d need to wear glasses.  Adam offered to go to the appointment with me.  I said, “Don’t be silly.  Stay at work.”  He came anyway and thank God he did.

Dr. Kelly closely examined Justin’s eyes for about 30 min.  He left the room, returned, and asked us to sit down.  This is when we got the information that changed our lives.  He told us that Justin had gone blind in his left eye.  We’d later find out that the evil tumors had detached his retina.  Dr. Kelly said it was one of two things; Coats’ Disease or retinoblastoma (cancer of the eye) and that it needed to be treated immediately.  I fainted and then got sick in the waste paper basket.  He explained how rare it is. He treats children’s eyes, exclusively, and hasn’t seen an RB case in 5 years.

For the next four days we cried, prayed, held Justin, researched and waited for our appointment with Dr. Materin at Yale. Tuesday came and Dr. Materin examined Justin’s eyes and told us it was cancer. Those words are truly a nightmare to a parent’s ears. Justin acted absolutely normal and perfect. There is no way this could be true.  Justin never said a word or showed any signs of not being able to see out of his left eye.  If anything, we often remarked at how well he could see, spotting an Audi or Tahoe on the highway.

Our family and friends were crushed.  They were with us EVERY single step of the way.  In some ways I think they hurt twice as badly; for us and themselves.  My brother Patrick lives down by Yale and was with us at every single hospital visit.  Words cannot explain our appreciation for all the support we received.

On Thursday, May 5th Justin had an exam under anesthesia.  Dr. Materin showed us images of Justin’s perfect right eye, 20/20 thank God, and tumor-filled left eye.  We were filled with feelings of shock and sadness.  The resident anesthesiologist placed his hand on Justin’s foot, while he was still sleeping, and cried.  In a short time Justin had touched him.  In a short time Justin has touched us all.

Friday, May 6th Justin had an MRI under anesthesia.  This was the first test to see if the cancer had spread beyond the eye. When Justin woke in the recovery room he looked at us and the nurse and asked, “Do you have any popsicles in this place?” His spirit was unwavering every single step of the way.  Dr. Materin told us the ONLY option was to remove his cancerous eye and then hope that the cancer had not spread.  We broke the news to our family and friends who supported us with everything imaginable… love, conversation, food, toys, books, wine, etc.

Sunday, May 8,  Mother’s Day, my cell phone rang and it was Dr. Materin.  He told me the MRI results appeared to show that the cancer did not spread beyond the eye.  I couldn’t have asked for a better gift!

The day before Justin’s scheduled surgery, May 10, we traveled to Manhattan to see Dr. Abramson at Memorial Sloan-Kettering Cancer Hospital to gain a second opinion, even though we knew this was a clear case.  All the families in the waiting room reassured us that we had come to the right place.  After another thorough examination Dr. Abramson said that he 100% agreed with Dr. Materin at Yale.  Justin’s eye must be removed and soon.  Waiting could allow the cancer to spread to his brain and to the rest of his body.

We tried to protect Juliana from the pain.  We weren’t sure how to explain it to her.  She must have overheard a few phone calls and conversations.  Two days before Justin’s surgery my Mom, Juliana, and I were sitting at the island.  She looked at my Mom and said, “Now Nana, Justin cannot see out of one of his eyes.”  Our mouths dropped and we waited to see what she’d say next.  “Now, cover one eye, Nana.  Can you still see me?  Yes!  Cover the other eye.  Can you still see me?  Yes!  Now, cover one ear.  Can you still hear me, Nana?  Yes.  Cover the other ear.  Can you still hear me?  Yes.  See, Nana!  You only need one eye to see and one ear to hear!”  To us that was the most brilliant and beautiful statement we had ever heard.  God speaks through children, as my Aunt Suzy says.

Wednesday, May 11, the day Justin’s eye was removed, was very difficult.  Dr. Abramson had told us that we should see it as a good day since it could be the day that our son became cancer free.  Of course, that is easier said than done.  The nurses and doctors, especially Dr. Flora Levin and Dr. Miguel Materin, could not have been more incredible.

 

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Taken just before his surgery. You can clearly see the retinoblastoma.

 

We took Justin home that afternoon, bandaged on one side of his face, from forehead to chin.  We had to give him hydrocodone, a heavy pain medication every 4 hours for the next three days.  He was such a trooper when we woke him from a sound sleep to give him his medicine, although he did say, “Daddy shut that stinkin’ alarm off!”  The next afternoon Justin was riding his John Deere battery operated Gator that his Nana and Puppup bought for him.

 

 

 

 

 

 

 

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Such a little trooper!

 

 

 

 

 

 

For the next few days I kept saying, “Slow down Justin.  Be careful, Justin!”  He looked at me and said, “Mommy, slow makes me sad and fast makes me happy.”  That is truly his motto in his life.  🙂    Justin never questioned the bandage on his face.  He did not miss his eye because he had no sight from it. He had miraculously adapted to seeing the world out of one eye.  The truth is that the damage had already been done.  As a parent, that is a terrible reality to accept.

Earlier this week we returned to Yale for check ups and to meet the pediatric oncologist.  We got the best news on Tuesday, May 17th.  The pathology report came back that Justin Adam was CANCER FREE.  The cancer had not spread!  My Mom was with Juliana and Justin in the waiting room.  That news brought relief to a Nana that is indescribable.  We were so relieved and felt soooo blessed!

Justin will require regular monitoring for the next few years, including MRIs every 3 months to make sure he remains cancer free.  He is sporting patches on his eye like it’s his job.   Justin will get his “special eye”, his prosthetic eye, in about 6-8 weeks.

Retinoblastoma is a rare but fatal cancer if left untreated.  About 300 children will be diagnosed with it in the United States this year.  It robbed our baby of his eye.  But I can honestly say that goodness prevails.  We’re gaining our strength from Justin.  He is a our “buddy”, the definition of a cool kid.  The love and support from our family, friends, and colleagues is truly amazing.  We’ve been showered with visitors, cards, phone calls, gifts, food, etc.  It is something we will never forget!

Justin and his big sister, Juliana, have taught us more in their short lives than we learned in our much longer ones.  My Dad said it best when he said, “Justin is going to be just fine.  Everyday is a good day for Justin!”  Let us learn from Justin and his strength and spirit.  Make everyday a good day, and please please please spread the word about retinoblastoma!

 

 

 

 

 

 

 

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Justin in his new shades with big sis Juliana.

 

Retinoblastoma cannot be prevented, but if it is caught early, it can be treated and kids can go on to lead normal and happy lives, cancer free. I am asking all of you today to take an extra minute to share this post with other parents in your life. You never know who may be looking at a photograph of their child, seeing the cat’s-eye reflection, and attributing it to the flash of the camera, when in reality, there is a vicious cancer lurking behind the glare. Sharing this post via Twitter, Facebook, or even just emailing it to a friend may save another family the devastation that my friends went through. Justin may have lost his eye, but his story may just save the life of another child. Please take the time to pass it on!

 

 

 

 

 

 

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