As the year 2020 comes to an end, I wanted to share what has been going on these past few months.
I’ve worked in a children’s hospital for thirteen years now and there’s one word that always trips me up. It’s always been the word that I’ve tip toed around. I’ve seen the heartache and havoc it wreaks. Yet I’ve also see the strength and courage it forges. For whatever reason or another I’ve just always avoided the word. I could have never known it would be a word that would creep in and turn our entire life upside down.
There are so many details, but I will leave a lot out and try my best to shorten this.
On July 30th 2020 it was just another ordinary day at home with the kids. I was on the couch and in that moment the glow in Sariyahs’ eye was huge, it almost looked like a full moon. I can’t tell you what made me jump up to take a photo in that moment, but with shaky hands I snapped a photo of it, and made a story on instagram. I could only catch it if she looked a certain way, but it was the most eeriest thing I’ve ever seen.
I felt a wave of panic come over me as I shared the photo online, and then called my mother. She told me what it could be, and for a minute it felt like I wasn’t breathing. I immediately called her doctor’s office barely forming a complete sentence. The secretary calmly told us to come in at 1:30. After hanging up I started Googling things, and part of me just knew it meant something really bad. After catching my breath I noticed my social media pages were blowing up.
I’d received over 50 direct messages on instagram, and Facebook friends telling me she needed to be seen quickly. I skimmed through the messages of kind hearted people telling me what it could be. How did everyone know about this type of glow expect for me? There was one message that stuck out to me from a mother of a child that had Retinoblastoma. I think I still kept trying to find other reasons for the glow, but we talked nonetheless.
More and more messages started pouring in, and I began to panic. A doctor from work asked me to send better pictures and told me to turn the flash on. In every photo her right eye had a glow to it, or appeared to be really cloudy.
How do you call and tell your husband that your baby may have cancer? I called him and told him to come home immediately.
I’d noticed the glow when it was a tiny little speck. It would only appear at certain times, and when I’d tell Jeff he’d just assure me that it was the lighting. In this moment it took all I had to yell,”I told you something wasn’t right!” But neither of us could have known, this would be the outcome. I only wish I would have acted sooner, and been more knowledgeable on this. This is why I am sharing this.
In between the waiting and getting ready for the appointment another friend from work texted me. She’s a doctor at work, and asked for more photos. I sent them to her, and told her I’d let her know what the doctor said. Her appointment couldn’t get here soon enough. I was there first thing in the lobby with Sariyah. They took us straight back and after vitals and a weight check the nurse did another eye exam. I was fully prepared with a ton of photos I snapped on my phone.
When the doctor came in my head was spinning as I spilled all the words out. She assured me that they had just done an eye exam previously at her one year well check and she was fine. I thought the same, and boy how I wish that was the case.
She turned the lights off just like the nurse did and looked in her eyes. She told me that her red reflexes were fine and that if something was wrong that wouldn’t be the case. For some reason I still didn’t”t feel reassured. I looked her dead in the eyes and said what about cancer, could this be cancer? She again tried to reassure me saying absolutely not, and taking it a step further she Googled reasons for cloudy eyes.
I still had this tight feeling in my chest that something was very wrong. She said she’d make a referral to ophthalmology but that it would take a few weeks to be seen. I felt physically sick, something was wrong and we’d have to wake weeks to be seen couldn’t she see that this was serious? I left feeling so discouraged, and scared. I texted my friend the news and the next part is nothing more than a divine intervention. She sent the photos to an eye doctor herself, and the doctor wanted to see Sariyah first thing Monday morning(it was Thursday)!
Little did I know at the time my friend and the eye doctor just played a vital role in saving my daughter’s life.
The next few days seemed to go by extremely slow. I spent hours after hours doing research, and trying to talk myself off the ledge. A friend from work called and we talked about the best case scenarios. But how do you prepare for the worst case scenario for your child? I remember becoming so consumed in articles, and photos my head started pounding. I couldn’t eat, or sleep.
I took screenshots of Retinoblastoma images and did collages of them next to Sariyah’s eye. Each time I did the similarity of the glow put my stomach in knots. Maybe this next part is denial, because I then came to one realization. The majority of these stories were of the parents catching the tumor only on a cell phone with the flash. I caught hers by physically looking at her face to face + on my phone with/without flash. So surely it was something else, I later would find out each case can be spotted differently.
No, maybe it was coat’s disease, a cataract, or maybe I was just seeing things. I snapped back to reality when I looked at her, and it was large and glowing with what looked like tiny vessels running through! Something was so very wrong! That weekend we went back to school shopping. It was our last weekend before they went back to school, and we had a lot to do. So I tried to push all the fears of her eye to the back of my mind, but it was so hard.
That Sunday we spent a lot of time outside playing, and then curled up on the couch watching movies. I’d give anything to have that normal Sunday back again, because the next day our lives were about to drastically change forever.
I anxiously got ready for the appointment and sprinted out the door with Sariyah. Because of covid only one parent could go, do I told Jeff I’d let him know immediately! When we finally made it, I remember looking at all the new patient paperwork, and just wanting to scream,”Can we please skip this I can’t wait a second longer I have to know what this is in her eye!” Obviously I didn’t yell that, and I sat as calmly as possible feeling out each sheet front and back.
When they called us back I was fully prepared with photos I printed the night before of her eye. I have to feel like I’m in control of the situation and to be prepared, that’s just who I am. I calmly laid the photos down for the nurse, and I tried to read her face as she looked through them for a sign of concern. She kept a poker face, and nodded asking if she could keep the photos in the chart.
After a while she had to dilate Sariyah’s eyes and the doctor stepped in telling me to take her for a walk. She wanted her to be as calm as possible for the exam in 25 minutes. When we came back in the room it was go time, I was ready for answers! But Sariyah said otherwise. She fought and flailed in my arms. I tried to keep her still, while the doctor called in an extra set of hands. We tried to distract her with light up toys and balloon games on my phone. Each time she’d look at something the doctor would shine the light in her eye.
At one point she said let’s all take a break. I remember thinking to myself, “Something isn’t right if it was she’d be able to tell me right away.” After looking a few more times she said she needed to step out again, and the nurse walked out with her. In that moment in that dimly lit room, I just knew. She came back in with different look on her face.
She sat beside me while she calmly told me what she’s seeing is a tumor and a lot of seeding.
She kept talking but I couldn’t make out her words, there was so much crying and shaking. Suddenly I realized I was the one loudly crying and shaking, I couldn’t stop, I couldn’t breathe. How can your heart keep beating, when it feels so shattered?
She stepped out to make some plans, and I called Jeff as fast as I could. I also texted my friend that set all of this up. Thankfully she was at work which is connected to the office. I told her everything, and within minutes friends from work came rushing over. The nurse stepped in and told me they were there and they came in and took Sariyah so I could keep talking to the doctor.
The doctor told me that St. Jude Children’s Research Hospital wanted us there after 6pm. She assured me they were a wonderful hospital, but I couldn’t focus there was this loud ringing in my ears, my head felt like it about to explode. When we left and checked out my friends met me at the desk with Sariyah as I desperately reached out for her. They told me one of them was going to drive us home. Thankfully I am glad they did, because I don’t think I would have even made it out of the parking garage.
One friend rode us over to the ambulance bay where a few coworkers all stood. There in the middle was the friend I had bene texting. I hugged her hard, thanking her for doing this and for saving my daughter’s life. I hugged everyone and just cried right there in the ambulance bay my heart felt like it had shattered into a million little pieces.
By the time one of my friends got us home, I had cried so much I was shaking. Her husband was there waiting to get her and I thanked her for getting us home. Jeff rushed out to unbuckle Sariyah and he cried a cry I’ll never ever forget. It was a deep wailing sound from the depths of his heart. We were two completely broken parents staggering through the rain with our baby girl.
We tried to hold it in for the kids, but it all felt too hard. I don’t remember most of that day packing, planning, and making phone calls, but somehow we did it. Family rushed over to be with the kids, and we said our goodbyes to the kids, it was the most painful day of my life.
Retinoblastoma is classified in groups with group E being the worst. In her right eye it’s a group D with a lot of seeding, and an A in the left eye. They were able to use cryotherapy on the A eye. The greatest miracle is that in the D eye the tumor is not blocking her direct line of vision it formed and grew in the back! Her oncologist told us they were prepared to have to tell us the eye had to be removed, but once they put her to sleep that wasn’t the case! Thankfully it also hadn’t spread past her eye, but she still has to have systemic chemotherapy. She also has to be put to sleep to receive subconjunctival carboplatin certain courses.
There are so many unknowns and it’s like we’ve been thrown into this head first. We are waiting to see if it’s hereditary, which they said in almost all bilateral (both eyes) cases it is. That puts her at a higher risk for a second type of cancer later. There’s still the fear of the tumor still spreading and just so many fears, but she’s alive and fighting that’s my greatest joy.
We are now four months into this, and she’s starting course 8 in two weeks. She will be receiving treatment for a year, and then routine exams. Life has been so painful, but it has also been humbling. Her story was on local news, Goodmorning America, and so many other news stations. It has been so cathartic in some ways knowing her story is raising awareness for others. One mother even reached out saying because of Sariyah’s story she took her son to the doctor right away due to a glow, and he was sadly diagnosed with bilateral retinoblastoma as well. I continue to ask God to use this pain for a greater purpose to bring Him glory.
Throughout all of this we have met so many amazing people, there’s been so much good. We’ve been given a second car completely free (our old one broke down beyond repair) to help with getting back and forth to St. Jude. Sariyah’s entire Amazon list was wiped clean. We received so many donations to help while we were out of work that entire month while at the hospital.
All our bills have been covered, kids taken care of, etc all because of so many kind hearted people. We’ve received meals, and so many toys for the big kids while we were away. We’ve been blessed financially, emotionally, and spiritually. And most of all I am so thankful for St. Jude, because of them we will never receive a medical bill for Sariyah’s treatment! I could go on with the list of miracles but I will just say God has met us here in the heartache and is carrying us through.
It hasn’t been easy, in fact it has been just plain hard. It feels like I have been in survival mode these past few months just trying to get through the day. I have a therapist and psychiatrist now which helps so much. I cry many tears, and so many times the weight of it takes my breath away. When one person has cancer it effects the entire family. I wish I could just take this all away from her. The hardest part is when she has to be put to sleep for chemo eye injections. And then there’s the crippling waiting while they do an exam to make sure it hasn’t spread.
Yet she inspires me so much everyday. Even after her first chemo eye injection she smiled and just wanted to play. She fights each day to keep going, and to see the joy. So if she can do that with all she’s going through, then surely I can too.
I want to end this by saying know the glow . Take regular flash photos of your kids. I noticed it without the flash, but please take regular photos. If you feel like something isn’t right speak up. Get as many opinions as you have to until someone listens. There’s many different things a glow in the eye could indicate not just cancer, but don’t wait seek a specialist right away. Also just because the red reflexes are present that doesn’t necessarily rule out retinoblastoma. I learned that the hard way too. I cannot explain how and I am no doctor, just always follow your instincts. I share this not to scare anyone, but to simply inform you.
Here’s a full video below of the beginning , and a full walk through treatment at St. Jude for the first month. I can’t look at this video without crying, there’s so many emotions and unknowns. But what I do know is that the God who knows has already went before us, and we will get through this.
You can follow her journey here on SariyahStrong.
Also for more updates, stories, and posts you can follow along here on instagram.
St. Jude Children’s Hospital
262 Danny Thomas Place
Memphis, TN 38105