Be Brave & Keep Going | Tuesdays with Jacob

Be Brave & Keep Going

August 21, 2017

First of all a huge thank you to everyone who has walked beside us as we've tried to figure out just what was going on with our sweet boy. What a difficult and confusing road it is to walk the unknown, full of both scary and not so scary possibilities. All of your calls, texts, visits, and literal hand holding have pulled us through this humbling experience. Listening, questioning, and just being with us throughout the last few weeks means more than you'll know. It feels like so much has happened in just a few short weeks. 

So I guess I'll start from the beginning?

Jacob's three year well child check started like all of the ones before it. They asked a bunch of questions about his fine/gross motor and intellectual development. We laughed over him not being sure if he was a boy or a girl. (He finally had it straight by the end of the appointment. "I'm a boy, Emily and Olivia are girls.") He giggled over the nurses flashlight in his ears. I talked with the doctor about tantrums and tv time, snacks and safety. And then the doctor started his list of things to check over. All the things he's checked every visit before. His hip rotations, inside of his ears and throat, etc. and then he turned out the lights to check his eyes. 

Jacob squirmed like crazy every time the flashlight shone on his face and the doctor kept repeating the test over and over. I could tell that something wasn't right. When he turned the lights back on he explained that he was pretty sure one of Jacob's red reflex's was duller than the other and that he was going to refer us to the local pediatric opthalmologist. He handed me a referral, said we would call, leave a message requesting an appointment and it would be a 3 month wait. And then the well check was over. I didn't think much of it since it was all very nonchalant. I started work a few days later and forgot about it. 

A week or so later, as I was getting ready to leave school I came across the referral paper in my planner. I made a mental note to call and make the appointment so that we could start the 3 month wait sooner rather than later, and then on a whim I opened up google. Now I know what they tell you, don't google symptoms, diagnosis, etc. EVER. But I did. And wouldn't you know that the very first thing that popped up under asymmetrical red reflex was retinoblastoma. There it was, in bold letters. Google was telling me there was a good possibility my kid had cancer. No other symptoms, completely undetectable except by a red reflex test and follow up. Rare, but most common in children 3 and under. Treatable by chemo and surgery to remove the tumors. I remember walking to my car as fast as I could, calling up the number on the referral paper and leaving a message requesting an appointment. And then I cried the whole way home. 

We spent the next few days playing phone tag as every time they called back I was working, and by the time I returned the call I got the answering machine again. I asked everyone I interacted with on a daily basis to pray for us, for Jacob's eyes. I held out hope that he was fine, that he was just squirming around too much to get an accurate reading, while feeling as though my heart was preparing for the worst. I laid in bed at night wondering what it would be like if we  ended up needing a lengthy hospital stay. Wondering how Jacob would react to any needed treatments. And just getting down about the whole thing in general. Everyone kept telling me not to worry, that they were sure he was fine, but I just couldn't shake that feeling. What if he was super sick and we had no idea? When I finally got in touch with the specialists they gave me an appointment in 3 months, just like the pediatrician said. As we were about to hang up I asked if they needed to know what the referral paper said and they asked if there was a diagnosis on it. I found the part that said "dx" and read it to him. I heard him gasp lightly and he told me we couldn't wait 3 months, Jacob needed to be seen ASAP. He gave me a new appointment time, early in the morning before they officially open, for the following week. I felt he was validating my fears and I hung up the phone and sobbed. And when another teacher heard me sobbing she came in and she cried too. 

During that week's wait I met up with my bible study girls who gave me a bracelet that read "Be brave and keep going." It's been passed through a few members of the group already as they've faced tough battles of their own. I looked at it over and over that week and reminded myself that no matter what we were going to keep going and we were going to do whatever it took to keep Jacob and his eyes as healthy as possible. Things were busy that week, school started back up along with swimming and soccer. But in the back of my head, those fears were still lurking. I took off  work the morning of his appointment so that we could all go together. I put that bracelet on and dabbed some stress away essential oils on my wrists to try and stay calm while my brain was freaking out. I repeated "Be brave and keep going" to myself over and over as we drove there, feeling like I could barely breathe. We checked in and then we waited. 

When they called us back the nurse first did a basic eye test with Jacob. She covered up his right eye and asked him to name the pictures for her as they decreased in size. House, hand, airplane, heart, over and over as they got smaller and smaller he named them. Then she switched and put the spoon over his left eye and repeated the test. I knew right away this was the problem eye. He squirmed and pushed at the spoon to try and see around it. When the nurse and daddy held him still so that he couldn't move he named all the pictures wrong. Then we waited for the doctor. When he came in he examined Jacob's eyes and said that he had an astigmatism in the left eye and that his two eyes have been seeing at very different levels and competing with each other for some time now. He said Jacob would need glasses to correct his vision and possibly a patch if his vision wasn't better in three months. He also noticed a slight bit of Brown's Syndrome in Jacob's right eye when he held his head straight and had him look at something up high. He had me watch, but I could barely notice it. Since it's not hindering his vision, the doctor said surgery would be unnecessary and that it would get better as he grows. I'm sure the sigh I let out was audible as someone had finally mentioned not needing surgery. Then Jacob was held down while drops were put in his eyes to dilate them. And he SCREAMED. 

Lucky for him blue eyes dilate fast and he got to watch tv and play with puzzles while he waited. When we were called back in Jacob had to be held down again while they held up glasses to his eyes and shone a bright light to figure out his prescription. There was more screaming. A LOT more screaming. When they were finally done they gave him a pair of sunglasses, which he called minion glasses, and sent us on our way. I remember walking out the doors carrying my little boy and feeling the deepest sense of peace. He was super fussy and moody that evening, but we could handle this. Glasses were nothing. Glasses were inevitable eventually since everyone else in the family wears them. We'll take glasses instead of chemo or surgery ANY day. 

I eventually returned to school that afternoon, but not after sending everyone that had been praying for us an update with the good news. The following morning we went to an optical shop and picked out a pair of glasses for Jacob that will arrive just in time for him to start preschool. He's not super excited about wearing them, he kept ripping them off at the shop, so I suspect there will be lots of bribery involved. Only time will tell whether we'll eventually need to patch up the one eye to force the other to work harder. Until then, we'll be brave.... and keep going. 

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