PeekabooNWA

Boy in the Blue Glasses

Posted on 30. Apr, 2009 by admin in Personal Stories

The whiteness of the room surrounded me like I was walking toward the end of my life as I knew it. Everyone was talking, smiling, and moving around as if they had purpose, but my breath was gone. It was completely gone. To this day, I still think it is caught up in the lights and bustle of the recovery room at St. Jude Hospital.

I looked across the room at my sweet baby boy, 3-years-old, with a huge brown patch over his left eye, iodine peeking out from the edges. This was real — as real as it was ever going to get. No amount of pinching my arm would get me out of it, and I felt empty and helpless. A part of my baby was gone forever.

As they placed him, still unconscious, in the red plastic wagon, I marched as upright as I possibly could into the hall where family was waiting and quietly warned my husband that I didn’t want to be consoled or touched by anyone — I only wanted to hold my son.

This is hard for me to write, even today. Even after we have been reunited with a peace we thought would never come, and even after all the doctors’ visits and thankful moments of cancer-free bliss, I still tear up thinking about what we’ve been through and how far we’ve come.

It all started with a hair cut! My father-in-law, a barber, had come to visit. I took a picture of Robert after his trim making a silly face, and his left eye returned a white light to the camera. I thought it was something to do with my flash and forgot about it. Over the next few months, I saw this white murky look to his eye in the bath, before bed, and sometimes while playing. I noticed that the reflection in his left eye was different, like something was in there. Another month or so went by, and one day I felt the deep burning urge to take Robert to the doctor. I called and made an appointment for the next Monday, June 27, 2007.

Dr. Simmons, our pediatrician, told me that I might want to take Robert to go see an ophthalmologist that very day. He explained that it could be a cataract but that he wasn’t sure, and he asked me to let him know what I found out.

In total disbelief, we obediently took him to the eye doctor and heard the words that have since been burned into our memories: “Your son has cancer. Retinoblastoma.”

Retinoblastoma is usually detected in children at a very young age — from just a few weeks old to a few months old. Robert was almost 3! His diagnosis was even more rare in that it was caused from a genetic mutation that occurs in less than 3% of childhood cancers and is due to a deletion on the 13th chromosome, not heredity.

St. Jude Children’s Research Hospital in Memphis, Tennessee was our next stop. We made arrangements for the other 4 children and drove crying the whole way. Twenty-four, hours later pictures of a large tumor in Robert’s left eye were taken. The only real option was to remove the eye. The doctor said, “Robert is more than just an eye. e is a whole person…”

Over the last two years, we have had the opportunity to educate many moms and children about Retinoblastoma and prosthetic eyes. We have also had the joy of playing many games of “Find the Eye,” which is not always the funnest game, but necessary when it is lost due to the sometimes erratic anger management issues of a ticked-off 3-year-old with a powerful tool of getting attention! We love Miraflex glasses because they don’t break, and we always get such nice comments when he has them on in the playground. Not to mention, they keep his other eye protected. It is a profound realization that if he were to ever lose his other eye, he would have none.

We withstand the stares when he doesn’t feel like wearing his prosthetic eye, and have learned that the sandbox is not the best place to play, but generally, we don’t often think about his prosthetic eye anymore. In fact, I often catch myself deep into the prosthetic eye as if it were real.

Retinoblastoma is deadly if left undetected. If you see something in your child’s eye that doesn’t seem right, don’t worry about being just another “hysterical mom;” go with your gut and take your child for an eye exam.

Take your young children to your pediatrician for regular check-ups, even if they are well, and have the doctor check their eyes specifically for Retinoblastoma. One warning sign to look for is in photographs: If your child appears to have a white eye instead of the typical red eye.

In the United States, because of the work of St. Jude Hospital, the survival rate is now 97%.

Robert was very close to not having a “happily ever after.” We are so blessed that the sweet, curly-haired blonde boy in blue glasses who loves Transformers is with us every day. Remember to take the time to embrace your children, no matter how hectic the day is, and cherish them for all that they are.

Story by: Danah Redmond
danah@hgplady.com