Monday, November 21, 2011

Monday, November 21, 2011

We had a really rough 12 hours at our house. Let me back up a bit and explain.

When I was originally pregnant with triplets, I searched the Internet for anything having to do with triplets. I came across a site called Got Triplets about 24 weekers Cole, Paige and Kaylee. At the time I knew nothing about premature birth or the fact that some babies don’t survive. I read their blog and I bawled and bawled and bawled. Everything I knew about prematurity came from their blog and as I was in labor at 23 weeks, I kept thinking, “Cole and Paige were born at 24 weeks, they were born at 24 weeks.” Honestly, that’s one of the reasons that Olivia’s middle name is Paige. It was almost as if discovering their blog was an eerie foreshadowing of what was to come. It left me with a really uneasy feeling.

As you know, my dear friend Amanda found out on Halloween that her 2 year old son, Ben, has retinoblastoma. He recently underwent surgery to have his eye removed. And although it saddens me that he had to lose his eye, we are so grateful that the cancer did not spread beyond his eye. Naturally, I’ve done some basic research on retinoblastoma so that I would understand what was going on. And I’ve bawled and bawled and bawled over the whole thing. I haven’t cried like that over a child who wasn’t my own since I read that triplet blog years ago.

Two main signs of retinoblastoma are 1) eyes that don’t align and 2) leukocoria, an abnormal white reflection from the retina of the eye seen in flash photography. Anytime leukocoria is seen it should be treated as an emergency with a trip to an ophthalmologist. Because Amanda got Ben in to be seen, his life may have been saved. It’s serious business. Before all of this happened to Ben, I had no idea about any of it.

As you know, Olivia’s eyes do not align due to strabismus. She has, however, been closely followed by an ophthalmologist since birth. I know that. However, last night I was working on our yearly calendar and reviewing old pictures when I came across this picture from July:

As you can see. . .one of Olivia’s eyes is white.

I freaked out! I mean full blown hyperventilating, full body uncontrollable shaking. I knew she had just had a dilated exam a few months ago, but the more I read online, the worse I got. I have a tendency to panic about things. . .especially about the health of my family. I’ve always been like that, but losing Logan and almost losing Olivia has only made it worse.

I slept 2 hours last night. . .that’s all I could do. First thing this morning, Ryan called our ophthalmologist and they agreed to see us today. They told us that she did have a dilated exam in August and they monitor for things like retinoblastoma. That was enough to calm my husband’s fears, but not mine. You see, I was also told that I wasn’t in preterm labor and we know how that ended up. I have trust issues, I guess. So, we went in first thing this morning. First, they did her usual eye exam where she had to read a picture chart. They covered up her left eye and she had to read the pictures with her right. Ben, as you know, had gone totally blind in his eye due to retinoblastoma. Olivia started spouting off all these pictures that weren’t there. . .like doorknobs and movies, etc. I got really uneasy. Could she not see the pictures? But, you have to remember that sometimes she is a goofball and acts silly. Her other eye she did fine with. They dilated her eyes and when we went back to see the doctor, we showed him the picture. He was a little concerned to say the least. Luckily, he examined her eyes and saw no sign of a cancerous tumor. Her doctor believes that the angle of her head and her strabismus caused her eye to turn slightly inward and made her eye reflect the white. He, however, never once made me feel like a crazy mother and said that if he had found a picture like this. . .he would have had it checked out as well. He said that they take this very seriously. He actually asked to keep the picture. I could finally breathe again. And life is back to normal. And I’m grateful. So very grateful. Not everybody gets that sigh of relief. Retinoblastoma is a rare cancer, however, many times it is the parents who first discover it. . .through a white eye reflected in a photograph. I would love for Amanda at some point to write a guest post on my blog to further bring awareness to this. I know that she’s really busy right now, but whenever she is able to. . .I’d love for her to share Ben’s story with you. It just may save someone else’s life.

Please keep close to your hearts all the children who are fighting cancer. My friend Libby’s little girl, Paxten, who is fighting leukemia. Olivia’s fellow 23 weeker, Tripp, who is fighting neuroblastoma. There are so many more who need our prayers and love and support. Reach out to someone and let them know that you care. Overwhelm them with your love and kindness. That was the #1 thing that helped us after losing Logan and throughout our NICU journey. . .just knowing that people care.

1 comment:

Linda and family said...

This made me cry Jodi. I think Amanda mentioned to you that we have a nephew that had to have one of his eyes removed when he was just a few days old. It was actually me that first made mention that his eyes were not the same size, but then I also noticed that one of his eyes seemed almost transparent or something (keep in mind this has been many years ago). I had Dewain (my husband) come look at Bryan's eyes. He agreed something didn't look quite right. I felt so bad, because here we were all meeting the new baby and I was pointing out the possibility of something being terribly wrong. I just knew that it didn't look right. My brother and his wife seem to make light of it. However, a few days later, we got a call from one of them that it was cancer and he would have to have his eye removed. I was pregnant at the time with our youngest. I will never forget how awful this news was. Bryan's other eye also had a few tumors in it, but they were able to save it. However, about 4 years ago, he has went completely blind. He sees very little, but catches glimpses of shadow he says. He went blind right around the time my mom was killed. And I remember talking to Bryan at the funeral. He was handling the blindness very bravely and I made mention of how courageous he was. He told me that he had always resorted to the fact that he would probably be completely blind one day and he was prepared to live a life in the dark. He is one brave young man!
Anyway, long story short, Kyle, our youngest was born and I noticed a bubble on his retina. After discovering Bryan's eye, I panicked! It didn't look like Bryan's eye, but what was a little bubble doing on my newborn's eye? Well, the doctor dilated his eye, checked the back of his eyes and they looked just fine. He stated that the bubble was something that would dry up and was just one of those newborn things that crop up. However, it was VERY scary and when I read your feelings and how worried you were, it just made me cry. I remember how scared I was. So glad that it is behind you and everything is fine! Have a wonderful Thanksgiving with your beautiful family!
Linda Stilwell