Saturday, November 2, 2013

What Does Retinoblastoma Look Like?

Well, it looks like this.........

It looks like beautiful baby blues smiling right at you.  It looks playful, adventurous, mischievous.  It looks like a normal 2 year old boy.  Cancer filled eyes, really?  How can we even believe that?  It sounds silly, ridiculous, not even true???? Oh, my sweet boy, I wish it wasn't true.

We received another great report from Dr. Shields on October 9th.  It was an incredibly long day at the Wills Eye Institute for Edward, but it was worth it.  Our arrival time was 11:00 a.m.!!! We have never had an appointment that late before.  Eddie is getting older now, and usually the babies are scheduled by their age, youngest to oldest.  Also, the babies receiving chemotherapy are also usually first, so they can go to the hospital that afternoon and start the chemo process.  Luckily, we are done with chemotherapy, so we trade that in for later appointment times. 

When we arrived, I was shocked to see so many babies in the waiting room.  That was NOT a good sign.  I started wandering around and started talking to other parents.  I asked what the others' arrival time was, and I realized the 8:30 a.m. baby was still in the waiting room!  Oh, no. My heart was sinking as I realized we were going to be waiting HOURS, with no food or drink.  Eddie was not allowed to eat/drink since midnight before and he was already begging for fishy crackers during our short car ride to the hospital.  He kept digging in the diaper bag, certain that he was going to find SOMETHING to eat!  I packed a lot of distractions- Mr. Potato Head, books, coloring books and crayons, cars, trucks, the ipad, the portable dvd player, etc.  We played with EVERYTHING.  We even received a Patient Pouch, which was a bag full of wonderful goodies- bouncy balls, playdough, beads, puzzles, card games, etc.  (Thank you so much to Lindsey Barnett and Sabra Bateman, mothers of Tyler and Brayden, other RB babies we have come to know along this journey.  These mamas joined forces to create the T&B Foundation and are filling, bags and bags of goodies to keep the babies and toddlers busy during the long days we have to go through. What a thoughtful and useful way to give back.  Great idea, and great job mamas!)

The sad part of waiting, is knowing that some child, or sometimes children, are back in the OR receiving treatment that was probably UNexpected.  Maybe the tumors are back and are spreading?  Maybe new seeds have appeared?  It's heart breaking, because you don't want that to happen to anyone's child, and you just sit there in the waiting room, kinda numb, not frustrated, just numb, hoping things start speeding along and babies start going back, trying to play with your child without letting your own fears creep into your head.  Finally, at 5:30 p.m. (and no, I am not joking) Eddie was taken back into the OR.  He was taken from my arms, screaming and crying and reaching out to me.  I thought this would get easier over time, but it doesn't.  It is like a kick in the stomach every time.  He knows where he is, he is scared of all of the doctors and nurses that are covered in gowns and masks.  Every time, I could throw up. I don't exactly now how to talk to him about this, because these eye exams under anesthesia and MRI's are going to continue to be a part of his life.  I don't want to scare him more, I don't think he really understands yet, I don't even know what to say.

My mom and I quickly jumped on the elevator and went down to the lobby to see if the breakfast Cafe Cart was still open and it was. Who knew? Breakfast at 6 p.m. We were STARVED, just as Eddie was, and we don't eat in front of him, so we didn't have anything to eat all day either.  I opted for a Philly bagel with cream cheese.  It was stale, nasty, hard as a rock, and GLORIOUS!

We ran back upstairs and within 20 minutes the nurse came back out to get us.  Dr. Shields and her entourage joined us in the hallway with a smile.  STABLE.  Both eyes, both tumors, STABLE!  I leaped out and hugged her, again, just as akwardly as last time, but she hugged me back just as strongly. The large tumor in the left eye is still hardening and calcifying and becoming scar tissue.  It is still covering the majority of the macula, blocking his central vision. The small tumor in the right eye is the same, small, and off to the side.  Stay there tumor, and don't move, do you hear me?  She said we really won't be able to do a reliable vision test on him until he is 4 years old.  But right now, the right eye has clear central vision, and the left eye, ugh, well, he can see, but not very much.... because of this crazy tumor.
This is what his left eye looks like on the inside.  On the far right of this picture you can see the dark black and gray spotting.  That is from the laser he received during his NICU eye surgery.  It stopped the retina cells from erratically developing and took away that peripheral vision.  The large white spot in the center is the tumor, and it is hardening.  The left side of the tumor is not yet scar tissue, as it is still blurry, so she will continue to check on that.  If you can spot the tiny half circle on the left side of the tumor, that is his macula.  And that controls our central vision, and that silly tumor is just hovering over it, and that is why we are not sure what he can see out of that left eye.
And this is his right eye, with NICU scarring on the left hand side that took away his peripheral vision, and then there is the tumor (the white blob).  You can clearly see the macula (the tiny circle on the right hand side, and luckily the tumor is not blocking it). 

So we will take our 6 month pass and try to live each day in the moment.  We have had a tough road, but we have had a more straight forward path than others.  We celebrate our good news, but we are saddened by the heartbreak of others.  Just last night I saw on Facebook that a girl just Edward's age, fighting the same fight as us, is scheduled to have her eye removed on Wednesday.  The cancer has spread too much and the eye has to be taken out.  I pray for that mother and her sweet daughter as they keep on fighting the good fight and endure this next curve on the cancer journey.  No matter how hard you fight, no matter how much you pray, cancer is sneaky, it is unpredictable, and it is scary.  We have to take each day and be thankful for our current blessings. 

Edward, we love you each day, all day long, and with a full and grateful heart. XOXO