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!

 

retinoblastoma

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.

 

retinoblastoma

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.

retinoblastoma

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!

 

 

 

 

 

Comments

  1. 1
    Erin says:

    I cannot tell you how much I appreciate you sharing our story. We wished someone had told us to “KNOW THE GLOW”. It’s only 1 in 20,000 kids, very rare, but if we can save ONE baby’s eye. Thank you and I love you, Mar!

    • 2
      The Mommyologist says:

      Thank you for letting me share it, Erin! I still cannot believe what all of you have been through. Love you all SO SO much! xoxo

  2. 3
    Angie says:

    I will definitely be sharing a link to this post with our readers.

    Lots of prayers and good wishes to Erin, Justin and their entire family. I sincerely hope that Justin has a speedy recovery and that his great energy is passed on to everyone … kids are AMAZING!

    I wrote a short post (on a different blog) early in 2010 about “red eyes = healthy eyes” after our pediatrician shared this info with us. Our little girl was only a couple of months old and our pediatrician knew that we were professional photographers and wanted to know if we knew about the “glow” and what it could signify. Needless to say, we didn’t. But we did feel it needed to be shared with everyone we know. I now look for opportunities every now and again to make “red eye” show up in snapshots of our little girl … just to keep a watch on her.

    Thanks for sharing – this is definitely something parents need to know about!

    • 4
      The Mommyologist says:

      Thank you SO much, Angie! It sounds like you had/have an amazing pediatrician. I had never heard of this condition until Justin got it. If parents were made aware of this stuff, so many kids could be saved!!

  3. 5
    Angel says:

    I cannot imagine that kind of fear and wouldn’t wish it on my worst enemy. He is a dollbaby and a trooper.. I am so glad he is cancer free and this is definitely info that needs to be repeated over and over regardless of how rare it is.

    • 6
      The Mommyologist says:

      Thank you so much…I agree. The more people who know about this awful disease, the less kids who will have to go through what Justin did.

  4. 7
    Katina Rice says:

    My very dear friend’s daughter had Retinoblastoma at 18 months old. I know the story very well and I am praying for their family. I will say that My Friends daughter, Ms. Bailey is UBER fabulous! She wears pink glasses and has a beautiful prosthetic eye painted by an artist at Duke University.

    • 8
      The Mommyologist says:

      Oh wow…18 months! It is so encouraging that she is ok now and that her new eye looks great!

  5. 9

    wow…scary stuff…I can’t even begin to imagine that roller coaster…
    what an amazing little trooper he is…kids are so much more sturdy than we think…
    So glad he is cancer free…will share

    • 10
      The Mommyologist says:

      Thank you so much! If one person reads this who is going through the same thing, then it was well worth getting the word out!

  6. 11
    mindy says:

    i will absolutely be sharing this story… you both brought tears to my eyes.
    my heart goes out to Erin… and yet her strength and bravery, and justin’s, are amazign and inspiring.

    • 12
      The Mommyologist says:

      Thank you, Min!! They are one amazing family…and I am just so happy that Justin is ok!

  7. 13

    Dear Erin and Adam,

    I was heartsick and finally relieved as I read your moving story about Justin. What a great little guy!

    Juliana is one smart cookie. She went right to the heart of the problem. What a treasure!

    You will be in my prayers for a long,long time. Blessings on your entire family.

    Love,
    Carole Carley

    • 14
      The Mommyologist says:

      Thanks so much for your kind comment, Carole. I will make sure to pass it on to Erin and her family!

  8. 15
    Heather says:

    Your story has given me chills.
    I am so sorry, but I am so glad that it was caught in time to prevent the spread of the cancer.
    Your son (and daughter) truly look like troopers.

    I will be taking another close look at my baby’s eye. The one my mom keeps trying to tell me is “off”.

    • 16
      The Mommyologist says:

      Definitely have it checked out…it is way better to be safe and make sure that things are ok! Sending prayers that they are…

  9. 17
    Johanna says:

    Thank you so much for sharing this story! I’m sure it wasn’t easy to write but it’s such an inspiring story and if you reach even one person who manages to detect cancer early you will have made such an amazing difference!

  10. 19
    Kmama says:

    Wow. I’m so sorry you had to go through, but I’m also so glad that you had such a wonderful outcome.

  11. 21
    shell says:

    I am so happy to hear that he is cancer free!

    It sounds like he is an amazing little guy!

    • 22
      The Mommyologist says:

      He is just such an awesome kid and I love him so much. So relieved that he is going to be ok!

  12. 23

    I LOVE LOVE how every picture of him he has a big smile on his face. GO JUSTIN!

  13. 25

    Thank you for taking the time to share this, Mary! It always breaks my heart to hear about a family who’s dealing with childhood cancer. I shared this on Facebook. If this helps with early detection for even one family, it will have been worth it. Sending prayers to Erin and her family.

  14. 27

    This post brought tears to my eyes. What an amazing little boy! Erin, thank you for sharing your story. You are an amazing mother with amazing children. Thank you, Mary, for spreading the word!

    • 28
      The Mommyologist says:

      And thank you, again for RT’ing this post! The more people we can reach with this information, the better!!

  15. 29
    Glamamom says:

    What a powerful story. Thank you for being brave enough to share. I am so happy that Justin is cancer free. He most certainly will go on to live a happy life with such a supportive family. Best wishes.

    • 30
      The Mommyologist says:

      Thanks so much, Jill! They are the best people ever and I am just so relieved that Justin is going to be ok!

  16. 31
    Kir says:

    oh my goodness, my heart was just breaking reading this story, thank goodness the cancer didn’t spread. AMEN JUSTIN!!!!!

    I have put it on my facebook page and will tweet it out for you. Please give your friend a huge hug from me…your whole family is in my prayers. xo

  17. 33

    What an amazing little boy! This brought tears to my eyes – I’m so glad it hadn’t spread. Thank you for sharing this – it’s so important for us, as parents, to be informed.

    • 34
      The Mommyologist says:

      Thank you Sarah! I had never even heard of this until he got it…if only parents knew what to look for!

  18. 35

    The whole story is heartwarming and inspirational..but this statement truly touched me and brought tears to my eyes “God speaks through children”. That is so true and I never really thought of it like that. Thank you so much for sharing this story.

    • 36
      The Mommyologist says:

      I know…wasn’t it amazing that she said that? I agree that God speaks through children!

  19. 37

    What an amazing post. My heart breaks for your family, but then again, you have your son in your life and judging from that pictures, he’s pretty happy most days.

    I know this is going to sound lame, but they did a storyline on this on Days of our Lives and it was the same thing…the reflection in the picture. I would have never known and probably would have dismissed it at first too.

    Thanks for sharing.

    • 38
      The Mommyologist says:

      That is actually great that Days did that…anything that spreads the word about this is wonderful! The key is to catch it early.

  20. 39

    Being a mom myself, this is tough to read without crying inside. But I know with the love and support Justin’s family will give him, I’m confident that he will adapt to his new “life”. I pray that the procedure made him totally cancer-free. Thank you for sharing his story.

  21. 41

    I cried from the beginning to the end of this post. I cannot imagine the agony and uncertainty it must have been for Erin. Justin is the epitome of strength and perseverance. Juliana is the voice of reason. We really learn so much from children that it’s unbelievable. I’d be happy to share this story. It is so so powerful!

  22. 43

    Thank you for sharing such a powerful story.
    I work at a non-profit lab that specializes in genetic testing for retinoblastoma, so we hear about many children every year with RB. The families are always so brave and strong, a real inspiration!
    I just want to add that genetic testing is helpful in many cases to determine which children have the type of RB that will affect both eyes, and which can be passed on to their children.

    • 44
      The Mommyologist says:

      Thank you for stopping by! I wish that more parents were made aware of retinoblastoma. I had never heard of it until this happened to Justin. Parents need to know what to look out for!

  23. 45
    Kristen says:

    Justin seems like a fun loving little guy and he is lucky to have parents that question things even when they are told not to worry.

    I learned of the glow from a story a few years ago. A mom had posted a photo of her child on-line and someone from another country noticed the glow and contacted the parents and most likely saved the childs life.

    • 46
      The Mommyologist says:

      I actually heard a similar story to that. It’s amazing how many kids can be saved if only more parents know about “the glow.”

  24. 47
    Courtney says:

    I am doing a report on Retinoblastoma for school, and this is a great help. Justin is a very luckly little man and you can tell God has a special hand layed upon him and his entire family.

  25. 49
    Julia says:

    Its two weeks after our 3 yr old girl has had her right eye removed. It’s so funny because I act all strong on the outside and that makes the people I work with think that all of this has been a piece of cake. If they only knew what we are going through.

    She saw herself in a low hanging mirror before we knew it was there and freaked out. But after that has been able to look at herself and say Princess.
    You are right about them adapting pretty fast. It’s us that have had a harder time grasping it all. She was in a stage E. I think she will still need chemo. We have 5 more appointments at MD Anderson in Houston on Wednesday and we live far from there and we have no good insurance for this.

    Its been very hard. I am just glad that we noticed the glow. The Dr.s here in Texas don’t check baby eyes for this. I want to campaign to get that changed, somehow.

    God Bless you and your family. I know its been hard.

  26. 50
    Shaik Ghyasuddin says:

    Thanks for sharing the story, I really appreciate it.

    My 6 months old son has similar story, but thanks God his eye is safe.

    I wish to spread the aware of retinoblastoma to all parents.

    Regards
    Shaik Ghyasuddinc

  27. 51
    Alyse says:

    My 2 1/2 year old daughter was diagnosed with unilateral retinoblastoma yesterday and we were referred to Sloan-Kettering next week to start our journey. Thank you for sharing this story and giving me some hope to a bright outcome.

    • 52
      The Mommyologist says:

      I am so sorry to hear that…sending her and all of your family positive thoughts and well wishes.

  28. 53
    Mellissa says:

    It’s been almost two years since you’ve posted this story, and I just want to thank you for it. My daughter was diagnosed with bilateral retinoblastoma just last month, at 2 months old. I felt as though I was replaying our own story all over again from the signs that we weren’t sure were normal or not, to seeing multiple doctors, and finally ending up in front of Dr. Abramson. Thank you for posting.

  29. 54
    Amber O. says:

    My daughter was diagnosed with retinoblastoma in her left eye 2 weeks after she turned 1. We just had surgery last week to remove the eye. She is doing great! My question is did they make him wear glasses? If so, why?

    Many prayers & blessings,
    Amber O.

    • 55
      The Mommyologist says:

      Hi Amber. Thanks so much for your kind words. My friend’s son is doing great now, and totally cancer free. He does wear glasses to protect his remaining eye, and actually, my friend started a non-profit organization that helps kids who need them. You can check it out at http://www.specsforlittleheroes.com. Sending prayers to your little girl.

Trackbacks

  1. [...] Justin lost his left eye to retinoblastoma, which is a form of cancer that manifests itself in the eyes of young children. He wasn’t sick or showing signs of what you’d think would typically happen to a child with cancer. Instead, his left eye was starting to look a bit lazy, and there was a strange, white glare in it that would sometimes show up in photos. Justin has loving and persistent parents who knew in their gut that something just wasn’t quite right. But what they thought would wind up being just a routine visit to the eye doctor turned out to be a cancer diagnosis that would change their lives forever. [...]

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