“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 ifs’ 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 3rd 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 2 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 that call came, it would not be what we expected. ‘Positive for T21,’ I heard the doctor say. I had no idea what that 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. I love my doctor and she was such a positive support during all of this.
My doctor referred me to a high risk specialist whom I named ‘Dr. Doom and Gloom.’ We were pressured to have an amnio, 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 Dr. at the NICU. He informed us that 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 that 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 3rd, 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 that 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 laid on the table for what seemed like forever awake – serious anxiety kicking in. After over an hour the doctor requested blood. It was at that 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.
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 that 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 that I needed to go home with him, I’m so drugged up here I can’t stay awake. Ryder was ok 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 ok.
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 that story, but I made a mental note it wasn’t normal.
For Christmas my husband got me a Nikon camera. I couldn’t wait to use it but 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’s 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 isn’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.
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?’ I’ll never forget the look on her face. In that moment she realized no one had told us. She replied, ‘yes.’ That’s when I realized the other doctor also knew that. 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. That 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 that 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 that. 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. I’m certain his extra chromosome helped him kick cancer butt fast.
Ryder is now 3 years old and 2 years cancer free. He’s been put under 29 times. We are now seen at PCH and he goes under every 12 weeks to make sure he hasn’t had any reoccurring tumors in his eyes and every 6 months to make sure there is no cancer in his brain. 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.
Bringing a life into this world is exciting and scary. Knowing there is an issue is terrifying. I know this first hand, 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 doesn’t discriminate. Cancer finds children and it’s a hard fight. I’ll never be happy that Ryder had cancer, but I’ll always find the plus side. Sometimes we go out and I get that 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 that 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.”
This is an exclusive story to Love What Matters. For permission to use, email Exclusive@LoveWhatMatters.com.
This story was submitted to Love What Matters by Ryder’s mom, Andrea Michaels. You can follow his journey on Facebook and Instagram. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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