Nate's Eye Story

I recently wrote up the following for a former classmate who had a recent eye cancer scare with her young baby. She had asked if I would share our story with her. I was happy to. While writing it, I realized that I had never really written it out like this before. I had told the story many times, but I don't have it written down anywhere. So, I figured I would copy and paste it here, as so many of our stories over the years are now recorded in the very cherished journal that my blog has become.

Nate had Retinoblastoma, which is a malignant tumor which grows on the retina. In some regards it was nice because they eye itself helped to keep it contained. But, in the same regard the optic nerve is the perfect pathway to the brain.

Nate has always had eye issues. He had strabismus (crossed eyes) when he was a baby. At 11 months old he got his first pair of glasses because he was far sighted, but also in hopes that it would correct the strabismus. It did help with his eye sight, because he never complained about leaving his glasses alone and wearing them. It did not help with his eye alignment issues. So, when he was a year and a half...maybe closer to two....he had eye alignment surgery in both eyes. He was seen for follow up visits with his pediatric eye doctor every six months.

Six months before he was diagnosed with cancer, he had an eye appointment and I raised concerns about his left eye turning in. His eye doctor did not dilate his eyes at this appointment, but saw nothing amiss. He figured the eye turning in more was because he hadn't been as willing to wear his glasses. I think of this appointment often when I think of Nate's cancer, as one of the symptoms of his cancer is the eye turning in. But in reality who knows how long it had been in his eye growing. I also went back and neurotically checked his baby pictures to look for the white eye in pictures (as opposed to red eye from the flash) that is characteristic of retinoblastoma (it's actually the flash reflecting off of the tumor). I found none, and I only have 1 picture where the tumor is evident. 

Anyway, six months later (when Nate was 3) we went in for what I thought would be a routine eye exam for Nate. The night before something odd had happened. Nate all the sudden screamed out crying and grabbed his left eye. Looking back I think this is when his retina detached (you get an odd flash of light when that happens). We had also been noticing odd white specks on his eye for a couple of weeks. Both of these were very significant, but we did not know it yet. At his eye exam, Nate became very upset anytime his right eye was covered and they felt that he was just not seeing very well through his left eye. The eye doctor then had a look and became very quite. He said that he felt Nate had a retina detachment and we needed to go to the U of M to see a retina specialist that afternoon. What he didn't tell us was that he was almost certain that the retina had detached due to a tumor.

So we went home, and called Kyle at work to come home so he could go with us. Off we went to the U of M. We first saw an assistant who kept asking questions about any white spots we had seen in his eye and how long we had been seeing them. He also looked in Nate's eye and drew a picture of Nate's eye with, what we didn't know then, a large tumor taking up more than half of the eye. We then went to another room and the retina specialist did an ultrasound of Nate's eye. At this point Nate was not a very happy camper and I made the comment "I think he has had enough of people messing with his eye today". I meant it as a joke, but became worried when the specialist didn't even crack a smile or look my way. After the ultrasound that confirmed the tumor, the specialist finally told us what everyone had been suspecting all day. That Nate had a malignant tumor on his retina, and in addition to the original tumor there were "vitreous seeds" which are kind of like baby tumors in the front of the eye as well. There were other possibilities (toxoplasmosis, a benign tumor, etc.), but they were fairly certain. This all happened on a Friday. We were told that Nate would have an eye exam under anesthesia on Tuesday for both eyes as well as an MRI of the brain. At that time the diagnosis would be confirmed. However, while under anesthesia they would also either take the eye out or place a port for chemotherapy. So, we needed to go home and do some research and be ready to make a decision on Tuesday. The decision to either have the eye removed or to have Nate go through many months of chemo and radiation. Three very stressful and emotional days for us.

The following Tuesday under anesthesia everything was confirmed. We also found out that the tumor was only in the left eye (huge relief), and although it was creeping close to the optic nerve the tumor was contained to the eye (huge relief #2). There were two big factors in our decision #1 his right eye was still good, and #2 there was no way that Nate would have any functional vision in his left eye. Given these facts, we decided to have the eye removed. I have never regretted that decision once. In fact that was my initial response to our options...get the cancer out of my baby!

Nate of course was our lesson in rolling with the punches, and was himself in about 3 days time. It was all a lot harder on use. To have the word "cancer" attached to your baby (no matter how old they are) is something I still struggle to describe with words.

Nate has since undergone countless eye exams under anesthesia to check for any cancer in the left eye socket, to make sure nothing was developing in the right eye, and MRIs to make sure nothing was growing on his pineal gland in the brain (which is made out of the same tissue as the retina). At first they were every three months and then they eventually spread out a bit. Each time he had an exam under anesthesia, I literally was sick with worry (I will spare you the details) that they would find something in his right eye. Currently he has eye exams every year as he is well past the age that is at risk for retinoblastoma (the retinas are fully developed and no longer growing by age 5 therefore significantly reducing the risk for cancer). However, he did have genetic testing, and it was determined that he had the retinoblastoma chromosome deletion which is a tumor suppressor. This tumor suppressor is also responsible for bladder cancer, osteosarcoma, and melanoma. So, he is at a higher risk for these cancers. Although it is at times hard knowing that, it is also a blessing. All of those cancers have a high cure rate if caught early. So, I would rather be aware of the possibility and get things check out if there are ANY  concerns so we can contain any cancer.


So there it is. One of (unfortunately) many Nate medical stories. Of course this was the biggest. But to see Nate walking 3 days after his surgery without his pediatric walker that he had been using is forever my motivation to keep fighting no matter what the circumstances.

 The night that Nate spent in the hospital after having his eye removed, Kyle stayed with him. They spent many hours singing Twinkle Twinkle Little Star. Nate would start to cry often that night and it was that song that calmed him down every time. It will always be special to us.

What is also missing from the above story is the support from family and friends that we received, and were so grateful for. Grandparents coming down to stay with Ben (who was a year old), or help take care of Ben when I was cuddling in bed all day with a recovering Nate. Visits from family the weekend in between to just see Nate and give support. A very dear friend who came to just BE with us to provide support and get us anything we needed so we wouldn't have to leave (and didn't require any conversation or updates) while Nate was in surgery that Tuesday, and who also gave me a ride home that night when I could hardly function anymore. LOTS of phone calls and supportive messages from family and friends.

This story is always my way of keeping things in perspective. Car is broken again!! At least it is not cancer. This was our mantra all through what Nate had been through before he got cancer. We would be at Children's for breathing issues, hernia surgeries, ear tubes, etc. and we always told ourselves At least it is not cancer. Well it finally came down to that for us. We never forget it and continue to hope that we can keep it that way for a long long time. Forever would be nice ;)