Ethan’s Glow Story

Diagnosis: Coats’ Disease 

This picture.  THIS PICTURE! If only I had known about “the glow” when I took this picture.  We had just changed the lighting in our living room the morning I took pictures for our family Christmas cards.  Why does Ethan’s eye have this odd glow? These crazy lights. I was convinced that the new lighting and Ethan’s astigmatism was the cause of this glow in his eye.

I was so grumpy at the lighting.  The only thing I knew about “red eye” in photos is that I had to use my special scrapbooking pen to take the red eye out.  If only I had known how important this “red eye” is in ensuring a healthy eye. This picture was in November of 2008.

In July of 2009 (eight months after “the picture”), we started patching Ethan’s good eye to strengthen his left eye upon the eye doctor’s recommendation.  We had three months before his next annual appointment so we decided we better hurry up and get started. As soon as we placed the patch on his right eye (good eye), his arms instantly went up in front of him like he couldn’t see anything.  He giggled, “Mom, I can’t see.” Giggle, giggle. I said, “what do you mean you can’t see?” But, he was giggling and bouncing around the house like his happy self. I called the eye doctor and spoke to the receptionist and told her what Ethan had said.  She assured me this was completely normal, “that when you take a child’s good eye away, it’s normal for them to act like they can’t see at all.” I thanked her and hung up the phone. The doctors know way more than me. Right? I don’t even wear glasses for goodness sakes.  So, we went back to patching. It did get better. It got better, we found out after the fact, because he was peeking out of the patched eye.  

The day I really knew something was wrong was a week or so after we started patching.  I decided Ethan would practice reading with his eye patch on his good eye. We sat down to read, which was always a chore with Ethan anyway because he didn’t enjoy reading.  I told him to get started and he didn’t say anything. I said, “let’s go Ethan, let’s get reading.” Nothing. I started getting grumpy. I said, “Ethan the quicker we start reading, the quicker you can be done.”  Nothing. He told me he couldn’t see where the words were. I told him they were below the pictures and to stop messing around. In the meantime, I looked from him to the book to see that it was upside down and not even facing him, he was holding it flat and he had no idea.  He started crying and told me he couldn’t see. I called the eye doctor back and told them I thought something was very wrong, that my son couldn’t see the book he was reading. I was told the earliest we could get in was October, three months away. If I had only known about “the glow” and had pushed harder to be seen.  

Three months later in October, we went to Ethan’s normal eye check, which didn’t end up being so normal.  Ethan’s left eye had a fully detached retina. I had no idea what that meant. The doctor seemed highly concerned and said we would need to go to Boston immediately for surgery.  It still didn’t hit me. I thought doctors could fix anything.  

Days later, we made our first trip to Boston to meet Dr. Tatsuo Hirose, a world-renowned retina specialist.  He examined Ethan and told my husband and I that he wanted to do an EUA (Examination Under Anesthesia) the following day.  He warned us that he believed Ethan had a retinoblastoma (due to his retina being pushed so far forward, he was convinced there was a tumor behind his retina) and that if confirmed, the next day he would remove his eye immediately.  I asked the question, “what if you remove the eye and it gets tested and he doesn’t have cancer?” He said “then you’ll be thankful that your son doesn’t have cancer.”  

The next 24 hours were devastating for my husband and I.  I tried gathering all of the information I could from the internet and our eye doctor back home.  This was ten years ago, back before I found support groups on Facebook, and there was much less information out on the internet.  But, by 8am the next morning, my husband and I had a plan. Ethan would undergo his EUA, but we asked that Dr. Hirose not remove his eyeball.  We had found information that stated that if Ethan was to have an MRI on his eye, that Coats’ Disease and Retinoblastoma would appear much different.  Coats’ Disease would show as blood in the imaging whereas retinoblastoma would show as calcification. Dr. Hirose came out of the operating room telling us that he surprisingly did not find a tumor.  He believed it was Coats’ disease because of all of the blood he found, but wanted to confirm with an MRI that it wasn’t a retinoblastoma. He was concerned that in very rare cases cancer can actually present as a sheet instead of a tumor and he wanted to ensure Ethan didn’t have this.  We were scheduled immediately for an MRI near our home town and we were over the moon happy to hear the imaging only showed blood. Ethan had Coats’ disease.

October 30, 2009 (eleven months after “the picture”) we headed back to Boston for Dr. Hirose to operate on Ethan to try and reattach his retina.  He was going to attempt a vitrectomy. After a four hour surgery we learned that Dr. Hirose could not reattach Ethan’s retina. He said the retina was too damaged.  He cleaned the eye up as best as he could and said we needed to hope for the best that the eyeball would retain it’s health even though it wasn’t working properly due to the detached retina.  He sent us home.

I did my best to put on a happy, normal face for Ethan, but I cried.  I cried a lot. I cried a lot for about a full year and I still do and probably always will.  The guilt about not knowing about “the glow,” the guilt about not pushing harder with the eye doctor to be seen, being so scared of the unknown about his Coats’ eye, being petrified that something would happen to his unaffected eye and then he wouldn’t have any sight.  Would he look “normal?” About a year later, Ethan and I were talking one night before bed and he knew I was getting choked up talking about his eye. He said, “Mom, I’m not sure why you keep crying about this, I can still see out of one eye.” It was his way of letting me know he was going to be ok.  And, he is.

Ethan is now one month shy of turning 18 and he still has his Coats’ eye.  He wears glasses every day to protect his unaffected eye (with the exception of some of his senior photos) and wears sports goggles playing soccer and tennis.  He is an Eagle Scout. He is a lifeguard. He is the captain of the varsity soccer team and is first singles player on the varsity tennis team. He plays the trumpet in concert band and instrumental jazz band.  He sings in the concert choir and is in a vocal jazz ensemble that won the state jazz festival last year with an overall score of a 99.3. He is in the top 5% of his class. He coaches sports in the summer for our community recreation department.  He passed his license test on the first try. He is such a good big brother, little brother, friend and son. He is so good at so many things. He is such a hard working young man. Coats’ disease hasn’t held him back even once. It might have made things a lot harder, but he has never let it make him give up on anything.

As I sit and write this Coats’ story, we are coming upon the 10th anniversary of us discovering his detached retina.  He still sees the pediatric eye doctor who originally diagnosed him. We have been released from Boston as his retinal doctor has retired and they say there is nothing else that can be done for Ethan.  I will always hold out hope that there will be some sort of new medical treatment that will fix Ethan’s eye. But for now, I count my blessings for what we do have.  

Lastly, I didn’t document Ethan’s Coats’ journey with pictures.  It was much too painful for us. However, in looking for something on my computer one day, I did come across this one lone picture.  It stopped me in my tracks. The emotions, the fear, the guilt. This picture embodies so much meaning for Ethan. My sweet little boy, with his sports pajamas on, clutching his stuffed lion, sleeping with his cat who stayed by his side his entire recovery to be sure he was ok.  Ethan is ok.