‘I noticed a glow in his left eye at 3 months old. I turned the flash off, but it was still there.’: Mom pens PSA after son diagnosed with Retinoblastoma

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“After having one miscarriage and one ectopic pregnancy, it was time to have the talk. My husband and I sat down in January 2015 and decided no more children. It had been a hard, painful road, but we were a happy family of 3. We let pain, fear, and ‘what if’s’ take over. The very next day I saw one pregnancy test in the bathroom. Something was telling me to take it.

My mind was like, ‘Just do it so you can throw it away and close this part of your life.’ To my surprise, it was positive. I had such a mix of happy and scared emotions. We decided this time we would wait to tell ANYONE. Having to tell family and friends about a loss is so painful. With our son’s third birthday coming, we thought it would be great if we announced at his party AND knew the gender! How fun would that be?! So I signed up for the materniT21 test. After all, it’s just a simple blood test.

Waiting for those results seemed like a lifetime. We were two days shy of 12 weeks, so we told the whole family, and told them we would know the gender soon. Little did we know when the call came, it would not be what we expected. ‘Positive for T21,’ I heard the doctor say. I had no idea what it meant, so she told me he would likely have Down syndrome. There was a high percentage chance of miscarriage, a high risk for stillborn, and of course the risk of many health issues. I sobbed right there on the phone.

3D ultrasound scan of a baby boy in a pregnant woman's stomach
Courtesy of Andrea Temarantz

My doctor referred me to a high risk specialist whom I named ‘Dr. Doom and Gloom.’ We were pressured to have an amniocentesis, told we wouldn’t be able to afford our child, told all the things he would never do, and basically made to believe this little person inside me wasn’t worth it and we were doing him an injustice by continuing pregnancy. She literally told us we should just abort and start over. I’m so very thankful we didn’t give in to this doctor.

We moved forward and throughout my pregnancy, everything looked great…until we were coming to the end. At 34 weeks, I was measuring 43 weeks pregnant. Ryder’s fluid was very high, but I also had high fluid with his brother. We were sent to talk to the head doctor at the NICU. He informed us there are three reasons they would see high fluid like this. Two would be seen in an ultrasound but one would not. It was safe to assume since nothing was seen this was the one. We were told he would need immediate surgery when he was born or he wouldn’t be able to eat and pretty much all children born with Down syndrome spend a minimum of 3 days in the NICU. It was so much to take in. We went home and prepared for our new life with a very sick child.

At my 36-week checkup, we decided it was time to induce. She felt inducing at 37 weeks was safer because if my water broke on its own and the cord came first, he would be in real danger. The date was set. September 3, 2015, at exactly 37 weeks. The day before induction I had to see my doctor. It was so weird. At least 17 times I wanted to tell her, ‘Don’t let me die.’ It was the craziest feeling. I couldn’t shake it, but I never said a word because, well, frankly I didn’t want to sound crazy.

We got to the hospital around 2 a.m. Everything was going as planned. Once I was dilated, we started to push. I’ve never felt so much pain in my life. After the 3rd push, I was ready to tell her I can’t do it again. Before I could say anything, she said, ‘He’s not tolerating this. We have to go.’ I watched my husband dress in scrubs as fast as he could and I saw the tears in my sister’s eyes. They wheeled me away and people were coming from everywhere. It was at this moment when I thought, ‘Oh my gosh, it isn’t me. It’s him! He is the one who isn’t going to make it!’ I’ve never prayed so hard. I told God I was sorry I ever doubted his plan. I begged God for life. Here I had been so sad and scared the whole time, but this was a wakeup call. ‘Lord, please don’t take him from us!’

The C-section was actually super fast. They had him out quickly and my husband was dancing around the room saying, ‘Look, Honey! Look how cute he is! He’s here!’ As planned, my husband left with Ryder and the NICU staff. I should have been out in 20 minutes, but I wasn’t. I lay on the table for what seemed like forever, awake and serious anxiety kicking in. After over an hour, the doctor requested blood. It was at this time she informed me there was a problem and we would talk about it soon. I could see the worry on her face. About 30 minutes later they were sending me to recovery. I fell asleep, and woke up with my family there who was just so happy to see me.

Mom on operating table and dad in scrubs welcome their newborn baby boy
Courtesy of Andrea Temarantz

Right away I asked how Ryder was. My sister told me he was fine and eating like a champ. I was so confused and highly drugged. I said, ‘Does he have Down syndrome?’ She said, ‘Yes, and he is so cute! They said he doesn’t need any NICU time! He is doing fine!’ I was filled in with the fact that my uterus had ruptured. I had been on the operating table for about 2 hours and it took a lot to put me back together. Ryder was released from the hospital 2 days later, but I was not. I explained I needed to go home with him, I’m so drugged up here I can’t stay awake. Ryder was okay but I was not, and I was unable to care for him in my room. Home would be best for both of us. The doctor said okay.

Little boy sitting on a brown couch holds newborn baby brother with a big smile
Courtesy of Andrea Temarantz

One would think this is where the story ends, but it isn’t. We went home and he was the best baby. Sleeping through the night by 2 weeks old and totally content as long as he was fed. He loved to be held and I loved looking at his beautiful face and his amazing blue eyes. I couldn’t believe we both made it through something so rare. All those sad feelings were gone. I felt so thankful. I’ve always been labeled by my husband as ‘crazy picture mom.’ So yes, lots of photos were happening. As Ryder hit about 2 to 3 months old, he was opening his eyes more and more for longer periods. The more I took photos, the more I saw a glow in his left eye. I started to turn the flash off because it was always there. I remembered I had seen a story about a little girl whose eye was glowing. I never read the story, but I made a mental note it wasn’t normal.

Newborn baby boy with Retinoblastoma
Courtesy of Andrea Temarantz
Young boy with down syndrome and Retinoblastoma
Courtesy of Andrea Temarantz

For Christmas, my husband got me a Nikon camera. I couldn’t wait to use it, but I was shocked to see the glow was still there. It wasn’t just my bad camera phone. I decided I needed to mention it at his 4-month appointment. I did just that. After talking about how great he is doing, lots of laughs and smiles, all of a sudden everything changed. She looked in his eye and things became serious on her face. As she started to leave the room, I asked if he needed any shots. She turned around and said, ‘I’m trying to get him into a specialist today. I’ll be right back.’ The word ‘today’ was just lingering. What could be so important? I was certain it was only cataracts or something like that. It left a pit in my stomach. She was able to get us into a doctor at 8 a.m. the next day. I went home and never said a word to my husband about how worried I was. I didn’t want to be overreacting, so I kept telling myself it was nothing.

The next morning I loaded both boys up and headed to the doctor really early. On the way, my husband called. I finally told him how worried I was and that one of my sisters said it can be a sign of cancer. We talked about it and I shrugged it off. I told him I’m sure that wasn’t what it is, and I’m just being emotional. We went in and this doctor looked in his eye, then looked at me and said, ‘It’s a tumor.’ I couldn’t believe my ears. My eyes filled with tears as I asked, ‘Is it cancer?’ He told me he didn’t know, but he was sending us to another specialist today. Again with the today! I called my husband from the parking lot crying. I told him he needed to meet me at this other doctor at 3 p.m. and that I was pretty sure something was really wrong.

A young boy with down syndrome lies down in the hospital during testing
Courtesy of Andrea Temarantz

We sat down with this doctor who started throwing all kinds of words and terms at us like retinoblastoma. I stopped her and said, ‘Wait, is it cancer? How do you know this? No one has even drawn his blood?’ I’ll never forget the look on her face. In that moment she realized no one had told us yet. She replied, ‘Yes, we know because this is the only reason we would see this mass in his eye.’ That’s when I realized the other doctor also knew this. He just made a choice not to tell me while I was there alone with my 3-year-old and my 4-month-old. I’m really grateful for that.

The next day we were admitted to Phoenix Children’s Hospital, where they checked his eyes and his brain for tumors. His brain and right eye were clear, but his left eye had a C, borderline D, tumor. RB has several forms, so it requires a blood test to tell you if it is just one eye or if it will inevitably show up in the other. The test takes 8 weeks, but we didn’t have that kind of time to make a choice. We needed to decide whether to treat him with chemo or remove his eye. At first, we planned for removal until another doctor gave us the information above. She explained this eye could be treatable, but if we remove it and it appears in his right eye, well, we would have made him blind. Here’s the kicker – not all chemos are the same. This concoction puts children at a high risk for leukemia. My immediate reply was, ‘Ryder is already at a high risk because he has Down syndrome. Will this make it more likely?’ She didn’t know.

In the 10+ years she had been doing this, she had never treated a child with retinoblastoma and Down syndrome. She reached out to several other hospitals, including St. Jude’s. None of them had treated a child with both, but she felt we should just forget about the Down syndrome and move forward. I couldn’t stomach it. I spent the weekend searching for better options and I found one in New York. We live in Arizona. This was financially out of our means, but we prayed this would save his life and his eye without putting him at risk for other cancers. 72 hours later, Ryder and I jumped on a plane.

I met with the team of specialists that told me all about IAC treatment, explained how it is different and doesn’t put him at a risk for leukemia and that he would need a minimum of 3 chemo treatments. Ryder and I made this trip every 4 weeks for 8 months. Remarkably, Ryder only needed two rounds of chemo! The rest was laser treatment. The doctor said he can’t say that has never happened before, but it’s a rare miracle.

Ryder is now 5 years old and 4 years cancer free. He’s been put under over 40 times. We are now seen at PCH and and this year we finally reached a point where he only has to go under once a year to make sure he hasn’t had any reoccurring tumors in his eyes. This is a very spontaneous and fast growing cancer, so they have to keep a close eye on him. It kills me to look back. I think to myself about all the tears I cried because he was going to have Down syndrome.

A little boy with down syndrome gets put under anesthesia to check for tumors from Retinoblastoma
Courtesy of Andrea Temarantz

Bringing a life into this world is exciting and scary. Knowing there is an issue is terrifying. I know this firsthand, but no doctor knows what your child’s life will be like. I can tell you cancer sure makes Down syndrome look like a walk in the park. Ryder’s extra chromosome has made my heart and my mind grow. It has made me focus on the little things, which makes me enjoy life a lot more. Down Syndrome has changed my life for the better. Cancer has not. Cancer finds children and it’s a hard fight. I’ll never be happy Ryder had cancer, but I’ll always find the plus side. Sometimes we go out and I get the look. You know, the ‘poor her’ or ‘poor him’ or the stare like he is different. I always smile back because I want them to see how happy I am. My little man fought a big battle and he won! That battle isn’t Down syndrome and frankly, I love him just the way he is. He brings joy to everyone who knows him. Just the other day a friend told me, ‘Everyone lights up when he enters a room.’

When taking photos of your children, please leave the flash on. A glowing eye can be a sign of 16 different things. Anything from vision to cancer (being the rarest). Retinoblastoma is definitely rare. Only 250 to 300 cases a year. I have yet to find another child with retinoblastoma and Down syndrome. However, the glow should be checked. All children should see an eye doctor by 6 months. It could save a life, vision and eyes. You wouldn’t have your pediatrician check your kids teeth, don’t leave their eyes up to them, either.”

Courtesy of Andrea Temarantz

This story was submitted to Love What Matters by Andrea Temarantz. You can follow their journey on Facebook and Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read Ryder’s backstory here:

‘I saw a glow in my son’s left eye. I started to turn the flash off in photos, then I remembered a story about a girl whose eye was glowing. My eyes filled with tears. ‘Is it cancer?’

Read more stories like this here:

‘Today my little sister received her school yearbook. She was intentionally left out due to her differences in ability.’: Sister to student with Down syndrome advocates for inclusion, ‘There is no excuse’

‘I said to my husband, ‘I think something is wrong with the baby.’ There was fluid in the back of his neck. ‘We need to admit you. Today.’: Mom says ‘Down syndrome is the best thing to ever happen to our family’

‘You’re purposely starving your unborn child by not eating.’ My husband wasn’t allowed in the room for ultrasounds.’: Mom births baby with Down syndrome after hospital malpractice, ‘He is more loved because, not despite, his diagnosis’

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