“Wander often, wonder always.”

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Day one with prosthetic eye | Retinoblastoma St. Judes

It’s been a whirlwind of a few months. It all started in May when we found out my youngest had Stage E retinoblastoma (eye cancer) in his right eye. You can read about it HERE. His eye had to be removed 5 days after diagnosis and it is still as traumatizing as it was that day. It was initially only supposed to be about 6 weeks with his eye stitched closed but it ended up being over 5 months stitched closed. He fell and busted all of his internal stitches and we didn’t know it. So when the 6 weeks check up rolled around to get the prosthetic we were told it has been completely open and infected for the past 5 weeks. We were all devastated. Socket revision with the coral ball was after that and that still didn’t take. 4 weeks later we had to do a dermal fat graph out of his hip to replace the coral ball in his eye. That finally worked and the infection was gone. Then we got hit with the news that he was mosaic hereditary retinoblastoma…

When you are an expecting parent, you are so nervous for when the baby comes, how the baby eats, or how the baby sleeps. You are never thinking about cancer or any illnesses for that matter. Never in a million years would I think that I would have to deal with cancer in my BABY. My 2.5 year old baby. He has had a cancer diagnosis is may of this year. Had his eye removed 5 days after diagnosis. Had two more surgeries due to infection. Had to have fat graphed from his leg. Multiple blood draws where it has took 4 of us to hold him down. The list goes on… I kept thinking at every turn this has to be it.. we can only go up from here. But boy was I wrong. Today we got a call from the genetics counselor at St Judes. COOPER HAS THE MOSAIC HEREDITARY RETINOBLASTOMA. Right before she told me I dropped to my knees and begged God with everything I had to please not let it be hereditary. Then she said it was. I just lost it. It’s like my arms and legs didn’t work. He has the mosaic form which means the mutated RB1 gene is in his blood at a 15% frequency. They dont expect that he got it from either of us because it is usually around 50% in your blood if it is. That means he is the start of the germline. He happened sometime after conception. During the first few years of life your retina develops at a rapid pace. During that time the cells divided into a bad mutation of the RB1 gene and that bad mutation was copied. That’s how its mosaic… He had a 85% chance that is was not hereditary and we lost the odds. Mosaicism is very rare and only has a 10 % chance out of all retinoblastoma that its mosaic. It’s a low percentage so that’s good but it’s still a heartbreaking diagnosis. That means even more examinations under anesthesia. That means he has a possibility of getting retinoblastoma in his good eye and also a risk for secondary cancers later in life. His children also have a 50% chance of getting the mutated gene and retinoblastoma. I’m trying so hard not to lose my faith but it’s hard. How could this happen? I’m so broken and lost and heartbroken and angry and sad………

Not going to lie, I’m really struggling with this whole genetics result. Retinoblastoma is already a rare cancer at about 2% of all childhood cancers. To make it even worse, mosaic hereditary retinoblastoma is even rarer than that at 10% of all retinoblastoma. To take it even further his unilateral mosaic hereditary retinoblastoma is only 4% of that 10% of retinoblastoma. So its extremely rare. I’m really struggling with the fact that we beat this cancer and now we are being told there is a chance of an even new cancer develop in a few or more years. It could be bone cancer, or sarcomas, or brain cancer….I mean it’s not guaranteed for him to get another cancer. But there’s a chance. And its lowers since it’s only in 15% of his blood. But there still a chance.

For a little lesson in genetics…… so he has a 50% chance to pass it on to his children. If his children do get the mutated rb1 gene it will not be mosaic and only in 15% of their cells like it is in his… if his children do get the gene passed on then they will have it in 100% of their cells which means they are almost guaranteed to have retinoblastoma in both of their eyes… I cant think about it without crying. I know it could always have been worse. But it’s hard. Really hard. I already told my husband we are paying for IVF for Cooper’s future wife. I will not let them go through this hell that we are……..

So that brings us to know….. finally on October 3 we were able to get the prosthetic eye.

Cooper’s new super eye was quite an ordeal. Dr Bob Thomas of Thomas Ocular Prosthetic Laboratories Inc was phenomenal and I couldn’t have asked for better results. He is an angel from heaven in my book. Coop broke my heart when he calmed down and seen it. Then said “mommy, no more booboo eye.” 😭😭 then he wanted me to take a photo so he could his super eye.. the swelling and bruising will go away as it settles in the eye. I couldn’t be any happier with the result. Truly works of art.

This was the day they removed the stitches from his eye. He still just had the plastic conformer in.
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