RETINOBLASTOMA CHILDHOOD EYE CANCER | COOPER’S STORY
SUNDAY, MAY 26, 2019
When I think about the events that have transpired over the past few weeks, I can’t help but to think of how fate has played a role. I have always been a believer of things happen for a reason and how there is always a grand plan. These past few weeks are my proof of God’s will and the grand plan. That is what is meant to be will be. I hope this story, Cooper’s story, will give you the knowledge and peace to see how the universe will always find it’s way. My son was diagnosed with Stage E retinoblastoma(RB), a rare cancer of the eye that happens most often in infants and toddlers. He is being treated at St. Judes in Memphis and that place is nothing short of a miracle. How we got there, in my eyes, is even more of a miracle from God and fate.
The only reason we ended up at St. Judes is because we were able to see an ophthalmologist in Knoxville, Dr. Jordan Masters, who just happened to be a previous student of the retinoblastoma doctor at St. Judes. I mean what are the odds. That we just happened to be seen by an eye doctor who knew the main RB surgeon at St. Judes. The only reason we are able to even get into Knoxville to begin with is a fellow coworker of my aunt’s. Even more so, I can’t help but to think if we hadn’t sold our house, we wouldn’t have been in Nickelsville to make the connection. I wouldn’t have had the opportunity to even be seen in Knoxville. We would have been seen by an Army doctor and I’m not sure they would have addressed my concerns. We put our house on the market in January thinking it would take a few months to sell and as much as it was a logistics nightmare, I’m so glad it sold in 4 days. It truly feels like fate/God had a grand plan. I can keep going….
Last year was very hard for me. I had two miscarriages back to back and I couldn’t see then why. I cried and begged God to tell me why. Why me? Why now? I yearned for the possibility of a little girl. To have that third baby to complete our little family. Now, I truly feel in my heart, if I would have had a successful pregnancy, I would not have been able to catch that glare in Cooper’s eye. I would have had a newborn baby and would have been so stressed and sleep deprived that I would have missed that in his eye. Furthermore, if I wouldn’t have been a photographer and in certain groups on Facebook I wouldn’t even had known what to look for.
It all happened because of one photo. One photo taken with flash to see the reflections in his eye. On Sunday, May 5, 2019, I seen a glimpse of a white flash glare in Cooper’s eye. We were in a dark room and the light of the hallway must have shined just right in his eye I seen a white flash reflection in his eye. I thought it was weird so I had decided to take a photo with flash of his eye. This is what I saw…..
My heart sank….. I knew what this was. I have been in so many groups on Facebook that showed photos like this and it was cancer. I just knew in the pit of my stomach something was wrong. If you can see the bright white dot in his eye. That is normal. That is the reflection of the flash from the camera. The cloudiness all around the white dot in the pupil is abnormal. Over the past year every now and then I would see a flash in his eye but it would never show up in photos so I never took him. Thinking back now, it literally rips me to shreds thinking if I had just took him in when I first saw it maybe would could have saved his eye. The very next day I was on the phone for half the day, calling every optometrist in the area. Since we were visiting family in Virginia I was having a hard time finding someone to see it. Luckily, I called Repko in Gate City. They were able to get us in that very evening…. He confirmed my worst nightmare and told us we needed to be seen somewhere the very next day. God bless that man.
The next morning, Tuesday, we make the trip to Knoxville for two appointments. One was a specialized cornea ophthalmologist and the other was a pediatric ophthalmologist. We didn’t even make it to the last appointment. The first one confirmed everything. He texted his mentor at St. Judes and we waited to hear back. Dr. Wilson, Chief, Ophthalmology Division, Surgery Department at St. Judes, asked if we could be there the next morning at 7am to start the examination. Wednesdays at St. Judes at EUA day, which means examinations under anesthesia. At that point, we were all shattered. How can it be that my baby at only 2.5 years old could possibly have cancer?!? We rush home to pack what we could to turn right around that night and make the 9 hour drive to Memphis for St. Judes.We arrive at St. Judes at 2am, half delirious and half broken. They immediately get us checked in and took his vitals and blood. We get to our hotel on St. Judes campus and have about 3 hours asleep. The next morning they wanted us there at 7:30am to start everything. St Judes really puts everything into perspective. It really humbles you. To walk these halls and see all of these sick children it really shakes you to the core. We manage the maze of hallways and make it up to the surgery floor. They take him back and begin the examination. An hour passes and they bring us back. It was like my whole world shattered. Dr Brennan and Dr Wilson confirmed Stage E Retinoblastoma eye cancer. The worst stage. His tumor is already encompassing his entire right eye. It has began “seeding” which means the tumor starts to break off and spread even more. He has thousand of seeds and those seeds are what start spreading the cancer. The doctors immediately recommended we remove the eye. He really didn’t even give us the option to keep the eye. It was that bad. His retina wasn’t even visible and there was no vision out of his right eye. He was completely blind in that eye. His tumor actually started from the side of his eye and grew inward which is another reason it was hard to see. Usually it grows from the retina outward which produces that big bright glow in the eye. Another hard blow…. We are all breaking down again. Completely shattered even deeper than what we were before. He wants to remove it Monday the 13th. So let me get this straight, all within a 48 hour period we find out that our 2.5 year old has cancer and has to have his eye removed… As a parent I cannot begin to describe what we are feeling. No child should have to go through what Cooper is going through…..
Then the talks begin…. Removal of the eye, chemo treatment possibility, and a world of other appointments. Did the cancer spread? Did we find it too late? How bad will the chemo be? Will this ruin my kid’s childhood? or even worse… will I lose my child? I still don’t comprehend everything that went into this. So much information…… The next big step was to see if the cancer spread.
That weekend was the longest two days of my life. It was the last few days that my baby would have two eyes. Two beautiful big blue/green eyes. Would he be able to cope? Would he be able to navigate with just one eye? I took these next few photos on the day before the surgery. I wanted to make sure I had at least one photo to show his beautiful eyes. Editing those photos were hard. I don’t think I didn’t any of it without crying. The anxiety and stress we had that night was unreal. I felt like I could literally pass out and/or throw up at any minute. I was just ready to have all this overwith….
That Monday morning was filled with so much doom. The surgery came and the whole waiting room was so tense. We finally heard. The surgery went great! The doctor didn’t see anything on the back of the eye but said he would still wait for pathology to see if any cancer cells “escaped.” But he didn’t see anything when removing it. That was the next big hurdle. Did the cancer escape his eye? We wouldn’t know for a week for that answer and we were actually able to go home that next day. He came out of the surgery ok he just didn’t understand why his eye was taped up. It was so hard for him to understand. It was so sore he was afraid to open his other eye. We had to feed him that day and it was so pitiful. To watch your child go through this amount of pain and trouble is heartbreaking…
The next few days were hard. He was very sore and grouchy. We got the bandage off so we just see his swollen eye and his eyelid sewn shut. They put a nickel sized coral(as in like coral reef) ball into his eye which will stay there permanently. They have sewn his muscles to that coral ball which in turn when it heals will move the prosthetic eye just like his real eye. The bone in his eye will fuse with the coral and over the muscles is a “conformer.” It is shaped just like the prosthetic eye which will help keep his muscles from contracting too much when healing. His eye will remained sewed shut for 8 weeks while all this heals and then we will get fitted with the prosthetic eye. They don’t think that his RB was genetic but they are treating it that way until we get confirmation from genetics 6 months down the road. They think it was just a random bad luck cancer occurrence. Patrick, Mason, and I all have to get tested for the mutated RB1 gene and Mason will get an eye exam here at St. Judes. Normally genetic RB occurs in both eyes and since his is only one eye they think it’s the non hereditary. The majority of cases are just a random occurrence. If it has spread out of his eye we will have to do chemotherapy and maybe radiation as well. It would open up a whole new book of problems. We just have to wait for the pathology report to come back.
I will never forget when Dr. Brennan called. It was the next Friday and I had went with Mason to his field trip to the aquarium. Halfway through the day I get a call from a Memphis number and my heart sank. I could feel the pulse in my throat. Was it the doctor? Did the cancer spread? I answered and she said she didn’t want me to wait all weekend for the news. Her next words were “he doesn’t need chemo.” I literally screamed and I’m pretty sure the whole aquarium now knew that he didn’t need chemo. The cancer was contained in the eye and all the cancer was removed with the surgery!! I don’t think I could be any happier at this moment. My baby beat cancer at just 2.5 years old.
I still don’t comprehend all the things that has happened these last few weeks. To say that I am thankful for all the prayers, messages, and well wishes is an understatement. I truly believe that all the prayers are what saved my baby. I will never be able to repay all of you and I want to thank you from the very bottom of my heart with every ounce of my body. Thank you. Thank you for praying for my baby. Thank you to all the friends and family that helped us through this fight. The fight is still not over. We still haven’t got genetics back yet. If he developed genetic RB, it opens up a host of other problems. He would have a higher chance of secondary cancers and even have a chance to pass the gene on to his children. So please continue to pray. He will be a patient of St. Judes until he is 18 and we will have frequent trips there for maintenance MRI’s and such. Please pray that his RB was not genetic and that he will not have any future complications from this. And if anything comes from all of this I hope everyone will “know the glow” and get your child’s eyes checked.
5 Weeks post removal
June 14th, 2019
It’s been almost 5 weeks post eye removal and life is just…. going on….. Some days I forget that it even happened and he is just a happy wild little 2 year old. Then other days it’s like the whole world is on my shoulders and I can’t help but feel so sorry for my little guy. Cancer has took so much from him and I can’t help but fear that it has took his innocence too. If someone gets near his eye, he already winces from pain or fear not entirely sure. That he knows he has to have his glasses on to protect his eyes now. How it took our family vacation away from us because we couldn’t take the chance of sand getting in his eye from the beach or water from the pool. How in public he knows when people stare because he puts his stroller hood up to cover himself. Not to mention the physical aspect of actually taking his eye…….
This whole event or occurrence or whatever you want to call a fight with cancer has truly affected us all. I had never seen my husband cry, I mean truly cry, before this. My Poppie is too afraid to play with him out of fear of hurting him. How his older brother is being so great with him and tells me if his eye is “dropping” (watering). We are spoiling him so much and getting him whatever he wants. We are all just wanting to put him in a bubble. And for me, I feel like this has given me anxiety. I have always thought I had nerves of steel and had thick skin. Nothing has truly crippled me from fear. That is until you find out your child has cancer……
Last week was hard. It was our beach vacation we had planned for over 6 months. It was the whole family on my husbands side and everyone was flying in. Cancer took that away from us. We sent my husband and Mason on to the beach while Cooper and I stayed here. Getting all these great photos of Mason playing at the beach with his cousins. I hate cancer so bad for keeping us home but even more for missing out on all our family. We tried to keep it fun for him. We ended up with a trip to the aquarium and to the zoo. It took so much from him, I didn’t want it to take his vacation away too. Then after that one evening Cooper popped one of his stitches in his eye. Cue another freak out from momma…. You can see how it’s pulling on that last stitch so much worse. You can actually see the plastic conformer piece that is holding the shape of his eye for the prosthetic. I keep telling myself only a few more weeks till the stitches come out. Only a few more weeks of holding him down to put the medicine in his eye. I am yearning for some normalcy in our life. Some care free days….
DAY ONE WITH PROSTHETIC EYE | RETINOBLASTOMA ST. JUDES
SUNDAY, NOVEMBER 3, 2019
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. 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.