Our little buddy Quin just turned two on July 22, 2018. So full of personality and life. Loves to play with his sisters, play with cars, wrestle with daddy and snuggle with mommy. His favorite show is “Blaze and the Monster Machines” and knows how to navigate the iPad to turn it on. He’s had to adapt to his big sisters being gone at school all day, but it’s made his imagination run wild!! He is so sweet and always wants to play. He loves to be outside and go on adventures.
It was about mid October when I started noticing a weird glare/glow in his left eye. Almost how a cats eye glows when the light hits it right. I thought it was weird and I never noticed anything like this in the girls. But didn't think much of it and thought it’ll probably go away. Well, it didn’t. It just sort of stuck with me and I couldn't stop thinking about it so I thought we should probably get it checked. I also remembered one of those random stories you see on Facebook about a mom that posted a picture of her kid and people noticed something. Well, I have a lot of downtime at work so I clicked on the story. I only read the first paragraph or two but it was enough to plant a seed in my head. Something about the kids eye flashing a different color in a picture or something. Once I read that, I kinda disengaged and I quickly clicked out of the story and continued browsing uselessly. Little did I know that it would help me know months later to get my sons eyes checked. I like to think of this as small miracle number one.
About two weeks after noticing this glow, I couldn’t stop thinking about his eye and I kept noticing it more and more. I started looking things up on the internet and of course freaking myself out with the things I found. I’ve done this before about other issues and Jason told me that I’m not allowed to look things up like that anymore (ha ha 😂) so after reading some of the things I had looked up about a glare in my Quin’s eye, I was a little reluctant to talk to Jason about it. But of course, he could see the concern I had and said to just make an appointment. After getting a referral for a pediatric ophthalmologist, from our ophthalmologist. I called the office but they didn’t accept our insurance. Lame. I still made an appointment for the following Tuesday just in case I couldn’t get in anywhere else. But the next office I called accepted our insurance and was able to get him in on Friday (it was a Wednesday when I called) after telling them why I wanted to see the doctor. The receptionist talked to the doctor and he wanted to see Quin sooner than later. It made me a little nervous but was glad they got him in. I feel like this is small miracle number two.
We got to the office on Friday and they needed to dilate his eyes. Quin was less than thrilled. Fought the eyedrops with all his might and somehow made his eyes smaller and smaller as we were trying to make them bigger for the drops. The drops needed about an hour to work so we just went to the car and watched none other than “Blaze and the Monster Machines”. His favorite. He was livin' it up being in the car without a seatbelt and watching a show. He couldn’t contain himself and was exploring every button in the car. When we went back in, I could tell the doctor was anxious to look into Quin’s eyes, but Quin was NOT havin’ it. The doctor tried to preoccupy him with toys, shows the other little magnify things they use and nothin. Quin would just not hold still long enough. The doctor said that he saw something and was worried it was a tumor but couldn’t know for sure. Even though he said tumor, it just still kinda rolled in one ear and out the other. It didn’t really sink in what that meant and I naively thought that it surely wouldn’t be a tumor. That kind of stuff doesn’t happen to us.... right!?!? He referred us up to Primary Children’s hospital and told me that Quin would need to be seen there as they would be able to put him to sleep, if necessary, to do a thorough examination and then they would also have the tools necessary for possible treatment. Ummmmm.... ok. He said we would get a call from primary’s for an appointment but since it was late Friday afternoon it probably wouldn’t be until Monday. FABULOUS. Two whole days of no answers and time to stew in my own thoughts and worry about the worst case scenario. And while I was extremely anxious, I somehow felt an overwhelming feeling of comfort and knowledge that everything will be ok. The road to get to ok may not be an easy one, but it will all be ok. How can I feel that in such a time of not knowing what’s wrong with my baby but knowing it’s serious enough to be referred to primary’s!? Heavenly Fathers love is real. He knows what we are experiencing and while he may not be able to take away whatever was in my sons eye, he has the power to comfort and the power to give us peace. We just need to have faith I him. Miracle number 3. Feeling peace.
The weekend went by sooooooooooo slooooow. I had gone most of the time without looking anything else up, but come Sunday night, curiosity got the best of me. So I reached for my phone. I found this story of a little 3 year old boy in the UK. His mom had noticed a glare is her boys eye. The picture she posted of the glare looked EXACTLY like what I saw in Quin. I read on. He was 3 when she noticed and had him checked out. It was retinoblastoma and it was so far advanced they had to remove his eye which resulted in the boy having a glass eye. The mother expressed that she was grateful they got it taken care of before it could have spread to his brain or elsewhere in the body. She said that glass eyes look so real now days and that the doctors would switch it out as many times as she wanted until she felt like it resembled how her little boy looked before. I looked at his picture with the glass eye and you’d never know it was fake. This both terrified me and gave me a bit of relief in a weird way. Terrified to think they may have to remove Quin’s eye, but relieved in a sense that he’d still look like my sweet little boy. After reading this article (or at least the parts I found most important) I knew. I knew in my heart that this was what Quin had. I didn't know the severity, of course. But I suppressed it because I didn’t want to believe it. Plus I didn't comprehend all of what it meant.
Monday came and as I was getting the girls ready for school, I got a call from primary’s. They wanted to see Quin at 2:30 that same day. Miracle number 4. Being able to get appointments so quickly. I called my mom and she was able to come out to pick the girls up from school and be with them while Jason and I went with Quin to primary’s. They needed to dilate his eyes again but they had a spray this time so it wasn’t quite as bad. They stated that they wanted to try to look at his eyes before putting him to sleep. I was very nervous about how they were going to look in his eyes after how he reacted to the dr at our appointment on Friday. Once his eyes were dilated and the doctor was getting ready to look at him, Quin was AMAZING. He seriously sat there for almost five minutes while the doctor looked in both eyes. Dr. Jardine was sooo good with Quin and knew all the right tricks to have him hold still. He was super impressed with Quin as well. Miracle number 5. At this point he told us that it was indeed a tumor. But he told us that in all the areas of the eye the tumor could grow, it was in the best place. It’s down in the lower part of his eye and out of his direct line of
vision. He told me that because I recognized something was off and that I acted, I most likely saved his vision and his eye. Miracle number 6. It was 3:16 pm. He talked with his nurse to see if another doctor was still there to do an ultra-sound. She said he was off at 3:30pm. He asked if we’d be able to stay and get ultrasounds of Quin’s eyes. Of course we agreed. The ultrasound tech agreed to stay to see us. The office was mostly dark and only one other front office lady was there. Miracle number 7. How were we so lucky to get into primary’s the same day they called and just barely get the doctor needed for an ultrasound so we didn’t have to drive back up there a different day? Small miracles I tell you.
I was able to hold things together until we were getting ready to go over to get the ultrasounds. When we were waiting to be escorted over, Dr Jardine touched my shoulder and said he was sorry for such hard news. This was when the floodgates opened. Sometimes things just don't seem real until someone else validates what is going on. Well, that MADE IT REAL. At this point even though he confirmed it was a tumor and it was called retinoblastoma, I still didn’t understand it was cancerous. That part came to my understanding when we were getting the ultrasound of his eyes. Again. Floodgates opened. I think at this point you just feel numb. You are sobbing uncontrollably, but at the same time you don’t feel a lot of things. Just very out of body experience almost. You just start going through the motions trying to understand and comprehend what changes you’re going to have to make and how to take care of them all. After the ultrasound, we sat down with Dr Jardine and he explained to us that they don’t have the resources and doctors here in Utah to treat Quin so we would need to go out of state for treatment. Another blow to the gut and my emotions. What about my girls? We could choose from New York, Pittsburgh or Los Angeles. We asked him who he would recommend if this was his son. He said Los Angeles. So that’s what we decided. Plus it'll be much warmer there.
We needed to get an MRI done for Quin and the first available date they were able to get us in was on Nov 1. Jason’s birthday. He said he didn’t care and just wanted to take care of our son. The next appointment would’ve been the following week so Thursday it was. So our appointment was set for 10 am. That time couldn’t have been more perfect. It allowed us to get our girls off to school at 9:15 and get there without having to rush. Miracle number 8. Quin did so good. The biggest issue was getting the IV. Which surprised me a bit. It surprised me they didn’t give him anything to make him loopy or sleepy before placing the IV. They had me hold him chest to chest with one of his arms under mine so I could hold him more still. They had a nurse with toys and bubbles to distract him while the other two nurses placed it. Of course he cried. What two year old wouldn’t. I was thinking at the time that this was clever and a good way to do it. But since being in LA, I learned better. After the MRI Quin slowly woke up and was a little grumpy from the medicine they gave him but overall wasn't too bad. About two hours later we received a call from Dr Jardine and he told us that the tumor was only in one eye and that it was all contained. YAY! Happy Birthday to Jason after all.
Now comes the hard part. More waiting. After everything else went so quick with all the appointments in Utah, the next week and a half took forever. We had issues with the insurance approving procedures outside of Utah (dang select health) but finally after numerous phone calls to the insurance and the LA hospital, we got things approved. In the mean time we had been trying to live life as normal as possible. You’d honestly never know that anything was wrong with Quin if you didn’t know about his tumor. We were making arrangements for the girls and also trying to figure out where we would stay while in LA. We didn’t really know what to expect as far as how long we’d be there, so it was tricky trying to rent a car and get a hotel. Jason got a car and we just booked a hotel for one night, not knowing if we’d be sleeping in the hospital. Thursday came and we were at the hospital at 6:15 am for the initial eye exam with Dr Kim. Little did we know they actually didn’t take him back until closer to 7:30. So we were watching Blaze on daddy’s phone trying to pass the time. He had to get into some cute tiger hospital jammies and we answered the same questions about four times to different people(I joke but I’m glad they do this). Then they gave him some sort of “happy” medicine in a syringe and he started to just feel more comfortable with all the people and sitting on a hospital bed. They gave him eye drops and then was able to wheel him back. It was all very smooth once the ball got rolling. They had a number associated with him so we could see on the screen when he was getting his exam and then when he was moved to recovery. This was such a small thing, but it was very comforting to know where your child was. Dr. Kim came and talked to us and told us his tumor was actually a higher class "d" instead of "b" which is what we originally thought. They classify the tumors from class "a" being the best down to "e" being the worst. The pictures they were able to get in LA were much better and more clear than the ones in Utah. He explained the tumor had “seeded” quite a bit meaning little pieces of the tumor had broken off and were essentially floating in his eye. But it’s all still very treatable and it was still all contained in his eye. He again went over the options which were to remove the eye (no thank you, and he didn’t recommend this), treat with systemic chemo therapy (which administers chemo throughout his body) or to administer chemo more locally through intra-arterial chemo (which is what the dr recommend the most). So we went with option three. So intra-arterial chemo means they surgically go into the artery in his upper leg/groin area and weave a catheter through his arteries up past his heart and into the optic nerve and then blast it with chemo. They would also administer vaso-constrictors around his eye to limit the amount of chemo spreading to all the other small veins and capillaries. He said they would do up to three treatments of this nature all about a month apart. So every time he will have to be put under and go into his artery up to his optic nerve. He will also have to get his blood tested 7-10 days after each chemo treatment and then an eye exam before each new treatment just to make sure that the tumor is responding to treatment. The eye exams and chemo treatment have to be done in LA but the blood tests can be in Utah. So we will be traveling back and forth a lot the next few months.
After the exam and Quin was trying to recover (I say try because he was not a happy camper when he was coming out of anesthesia) there were oncologists and social workers that came to help explain the next process and what needed to be done. They have been very accommodating since we are out of state. They arranged for us to stay at the Ronald McDonald house and also gave us one way tickets to fly home confirmed on Southwest Airlines. Every little bit helps and is a huge relief with it being so close to Thanksgiving. Flying standby is next to impossible during the holidays and having a little boy that just underwent surgery on top of that, would not be fun if we got stuck somewhere and be uncomfortable. Miracle number 10. (Plus we want to get home to be with the girls too. This is the longest we have been away from them. They are handling this like champs and have been so good for both grandparents). On Friday we went back to the hospital to have bloodwork done as well as talk things over with the doctor and get a date for his first treatment. We were first told that we would have the surgery on Monday, November 19 but they changed it to Tuesday, November 20 for a few reasons. First being that his appointment on Monday would have been at 11:30am and Quin would have had to fast all morning. NOT easy for a two year old who needs his warm milk in the morning. Second, the doctor said that he will usually get a few cases from the weekend that are more urgent and Quin's appointment would likely get pushed out even further in the day. So when he told us he would be the first appointment on Tuesday, we gladly agreed to change it to Tuesday. Miracle number 11. All these small things add up to a lot in my opinion and it seemed to just make things go a little more smoothly for everyone but especially Quinners. He really has been a champ through all of this. He doesn't understand why he has to get poked so many times and why we have to hold him still while the nurses poke him and examine him and not give him food in the morning before appointments. This all breaks this momma's heart, but he has been so very strong. I found a sweatshirt that said "Mommy's little Super Hero" on it and I HAD to get it. It's true. He is my little super hero.
**I'm not sure why the pictures posted out of order, but they did. And I'm not the brightest crayon in the box when it comes to figuring theses things out!
