Thursday, August 28, 2014

Know the Glow

I read an article that was posted online a few weeks ago. It was a true story about a woman who posted her child's photo on Facebook and a family friend or relative noticed a strange whitish-yellow glow in one of the kid's eyes. She immediately contacted the mom and urged her to take the child to the doctor. That strangely colored glow, unlike red eyes, which are commonly caused by flash photography, could indicate a number of serious eye diseases, including Coat's Disease and retinoblastoma, or cancer of the retina, which is the most common malignant eye tumor in children. The mom listened to the advice and, as it turned out, her child almost lost his eye to that cancer. Undetected, it could've spread to his brain and taken his life. Like most things I read, the story found its way into the recesses of my brain, where it could rest until the information was needed again.

I never thought I would need it so soon, for a reason so close to home.

If you know me, you know I like to post pictures of my 3 month-old, Aria, every day. She has so many adorable expressions and outfits that it's very hard for me not to share. Generally, I'll prop her up in the corner of the chair in her room and swivel it so the natural light from the window shines on her, making the flash on my phone unnecessary.




But, two days ago, Aria was cranky and wouldn't cooperate with our daily shoot schedule. It wasn't until I brought her downstairs that she cheered up and allowed me to shove the camera into her face. As the shades in our family room were closed to allow the boys a glare-free view of the TV, the flash went off to light up the subject of my photo. My heart stopped when I saw the frozen image appear on the screen.


Oh. My. God.

THE GLOW!

I couldn't speak right away. The pounding in my chest moved to my head and I felt like I'd been punched in the stomach. "That's not good," I said out loud, causing Jimmi to shoot me a puzzled look. I showed him the picture and he made a joke about Aria being possessed, and couldn't understand why I wasn't laughing with him. "That could mean something really bad," I explained quietly so the boys wouldn't overhear. I told Jimmi about the article I'd read and then I shrugged it off, along with the photo, assuming I was just overreacting. Seriously, it can't really be possible to diagnose eye cancer from a photo.

I allowed my brain to forget all about the glowing eyes until yesterday, when I was going through the photo album on my phone, deleting anything blurry or unimpressive. I almost hit the trash can icon on the bottom of my screen to remove the picture with weird colors in my princess's eyes for good, but the nagging voice in my head stopped me. "Call the pediatrician," it said. I picked up the phone and hung up before I could finish dialing. They're gonna think I'm nuts, I thought to myself. But the voice came back again, "You need to call the pediatrician." I knew it wouldn't quiet down until I obeyed, so I made the call.

"Hi, I took a picture of my baby and the flash made one of her eyes glow like a whitish-yellow. I read an article that the color could indicate some pretty serious conditions so I wanted to give you a call." The nurse put me on hold and I could almost hear her laughing at me as she told the other nurses about the crazy caller on the other end of the line. And then she came back to the phone, "Hi. I spoke to the doctor and she wants to see Aria as soon as possible. Can you come in tomorrow morning?"

What?

They want to see her first thing in the morning? Clearly, that's not a positive sign. I confirmed a time for our appointment and hung up the phone. I stood, motionless, for a few minutes before doing what I knew I shouldn't.

I Googled it.

I can't even begin to explain the fear that mounted as I scanned the results of my query. Knowtheglow.org popped up all over the place, with photos of babies and children with eyes that looked just like Aria's. The website warned parents not to ignore the visual symptom that has led to the diagnoses of 80% of children with Coat's Disease or retinoblastoma. Upon further research, Wikipedia informed me that one of the treatments for retinoblastoma includes chemotherapy. The thought of my tiny baby having to endure chemo caused my head to become fuzzy and my knees to buckle. I had to grab onto the counter to keep myself from falling. I was sick to my stomach as I told Jimmi what I'd just read. Always the calm to my storm, he insisted that I keep from worrying until the doctor checks her in the morning.

I changed Aria into her pajamas and gave her a bottle before bed last night. She fell soundly asleep in my arms almost immediately, but I couldn't put her down. I wouldn't put her down. I held my miracle baby close to my heart and rocked her for over an hour. I listened to her sigh happily while I watched her lips move as she sucked an imaginary nipple in her sleep.

I didn't sleep at all.

I woke up every hour, hoping it would be time to get ready to leave for our appointment. The time dragged on and on until, finally, the sun came up and I could get out of bed. Soon, I told myself. We'd have the answers soon.

We arrived exactly on time for our 9:50 am appointment and we made ourselves comfortable in the waiting room. Ten minutes turned to 30, and we still hadn't been called to an exam room. At the 45 minute mark, Aria had had enough and started to cry. "Can you tell me how much longer it'll be?" I begged the receptionist, who shrugged unsympathetically and replied, "There's only one doctor seeing the sick visits. She's going as fast as she can."

Damn you, last week of summer vacation!

Then we heard a voice call, "Eileen?" Silence. "Eileen?" More silence. I was already on my last nerve as I realized the medical technician was actually calling Aria by her middle name, which she had done once, in the past, and expected us to answer. I jumped up, baby in my arms, hoping Jimmi would follow, and barked, "Are you calling Aria by her middle name again?" She looked at me like I had horns on top of my head and asked, "Eileen?" What is WRONG with the woman? "Her name is Aria, not Eileen. Eileen is her middle name." She glared at me, not understanding my problem, "But it's still her name," she insisted. I couldn't play nicely, "It's her middle name. Her name is Aria. Do you answer to your middle name?" She responded with a bit too much attitude, "Eileen is easier to pronounce. Would it be better if I called her 'Kane'?" I lunged forward, then realized the baby would hinder me from strangling this bitch, "Yes! If you had called our last name it would've made more sense. At least we'd have known you were speaking to us!" Are we really having this discussion? Who calls patients by only their middle name and expects them to answer? She got sassy with me, "Eileen Aria. Kane Eileen. Kane Eileen Aria. Is that better?" I was silently counting to 10 to avoid a murder charge. "So, what's going on with AAAAAARRRIIIAAAA today?" she asked, dragging her name out like a snotty teenager. I chose to be an adult and just answer the question, "I took a picture of her and the flash made her eye glow white. I know there are some eye conditions that can cause that and wanted to have her checked." The tech stared at me blankly then glanced at Aria's perfect, blue eyes. "They look fine to me," she said snidely. I explained, "It only appears in photos." She was visibly confused. "You took a picture of it?" I whipped out my phone and handed it over. "So what's wrong with her eyes?" Oh, how I just wanted the damn doctor to save us from this stupidity! "Look!" I pointed. She still had no idea, "Her eye actually looked like this?"

AAAAARRRRRGGGGGHHHHH!!!

"No! It's the way the flash reflected in the retina! The white glow indicates a problem!" She finally caught on, "Oh. I see. Ok, the doctor will be right in." And she sailed out to the hallway.

Aria was handling the long wait surprisingly well until we hit the 75 minute mark and she began to scream bloody murder. "She's exhausted," I told Jimmi, "and she's getting hungry. But if I feed her she'll fall asleep and the doctor needs to see her eyes." Another five minutes passed and I opened the door, hoping anyone other than the nasty, moronic tech would be standing there. Luckily, Aria's primary doctor, who was seeing well-checks today, was in the hall. "What's going on?" she asked when she saw me. "She had a white glow in a photo and we've been waiting over an hour to be seen." She looked around then asked a nurse who was seeing sick visits. After she got an answer she turned to me and said, "I just looked at her eyes a few weeks ago and they were fine, so I'm sure you don't have to worry. If Dr. R isn't with you in a few minutes I'll come in and check them again myself." I thanked her and closed the door.

Aria continued to scream until, finally, the doctor appeared. "Poor baby!" she said as she entered. "Why are you so upset?" I couldn't help myself when I replied, "Because she's been waiting here for almost ninety minutes!" We got down to the issue immediately and I showed her the picture of Aria's glowing eye. The doctor's face showed obvious concern. "Ok, let me check her out. It's the right eye, correct?" she asked as she looked at the picture again. I nodded as Jimmi held the wailing baby. The doctor did her best to look into Aria's eyes with her light but they would squeeze tightly each time she'd let out a piercing cry. I shook toys in front of her face and was able to get her to stop screaming long enough for a quick peak. "They both look like they're reflecting red, which is good," said the doctor. She could tell I wasn't convinced. "Do you want to see?" she asked. Of course I did. She told me what to look for then handed me the special light. My baby was crying so hard, by that point, she wouldn't open her eyes at all. I made her a bottle, hoping it would calm her down enough to allow me to see for myself. And it did. I looked once, then twice, then a third time. The only color I could see, as I peered through the tool, was red.

But what about the picture?

"I really don't see anything of concern," said the doctor, "but, because of how her eye looks in that picture, I think she should see a specialist, just to be sure." I agreed. She continued, "Based on what I see, I'm not going to call and have them squeeze you in today, but I think she should be seen within the week. Don't wait longer than that." She knew what I was thinking. "Would you like me to have my nurse schedule something for you today or tomorrow?" Oh, thank you! "Tomorrow, please," I replied.

At 12:30 tomorrow, my sweet baby will be examined by a pediatric eye physician to determine whether or not she has any of 15 conditions that could lead to blindness, loss of an eye or, God forbid, death. I'm thankful her initial check seemed normal but, based on my own health issues, I know how quickly a diagnosis can change.

Please send positive thoughts and prayers to my baby girl.

Thank you.

2 comments:

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