EyeHateCancer! Help Cailyn get a new eye.
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“Your daughter has GROUP E Retinoblastoma and we need to remove her eye immediately.”
It all started in November 2012 when Cailyn told me that she was seeing spots in her peripheral vision on the right side. I assumed that her little 6 year old mind was trying to get out of going to bed again. I told her that if she woke up in the morning and the spots were still there, we would go to the Drs office.
The next morning, Cailyn confirmed that she was still seeing the spots, so off to the eye Dr we went. I knew something wasn’t right when the Ophthalmologist kept making “mmmm” “ahhh” “well what is that?” comments repeatedly. He looked in her eye long enough to try and draw what he was seeing on a piece of paper. The Ophthalmologist explained he saw something on Cailyns Retina but didn’t know what it was. So he made a phone call to his Retina Dr partner and within the hour we were in his office waiting to be seen. “You see, my office is filled with, well…..” the Retina Dr pointed out all of his geriatric patients to me and he said “I don’t ever see children. I’m going to have to call a Pediatric Retina Specialist at Johns Hopkins, they will know what it is.” The Retina Dr spoke to one of his partners in Maryland and since that was the closest place to us, that’s where we were scheduled to go.
We lived in Newport News, VA at the time. We had only been in Virginia for less that 2 years after relocating from Philadelphia in 2011. We were scheduled to go to Johns Hopkins the following week. Once we got there, Cailyn would undergo hours of testing and imaging. Their conclusion was that she had contracted a worm in her eye and that her Retina encapsulated it. Toxocariasis. The plan was to follow up in 1 month with them. So one month later when we followed up as directed, we were relieved to hear that they still thought that she had the worm in her eye, it had not changed, and we were to follow up with her Retina Dr in Virginia in 6 months time.
June 2013, on the first Friday of the month, 6 months after her last appointment, we followed up as scheduled. We go back to the retina Dr in Virginia that only sees old people. And when he finally takes a look in her eye, he looks at me with a concerned face and says “Cailyns eye is significantly worse. She needs to be seen at Wills Eye in Philadelphia immediately. I will make the arrangements for you to be there Monday.” And with that, the next 5 days were a total blur.
Monday morning, we started our day at Midatlantic Retina which was another Retina Specialist that did see children and they also worked at Wills Eye. We were there for literally 5 minutes. They told us that we needed to go to the 12th floor at Wills Eye Hospital to see Ocular Oncology. 6 hours of testing, Ultrasounds, Scans, Photos, and a ton of waiting. Caitlyn's Ocular Oncologist would walk Into the exam room we were sitting in and she would have an entire entourage of medical students that followed her every single move. Cailyn’s father and I looked at each other and grabbed each other’s hands. She introduced herself and stated “Your daughter has Group E Retinoblastoma and we need to remove her eye immediately.” She handed me a book filled with photos of children that have had their eyes replaced and have had prosthetics made. She continued to tell us that Cailyn would lead a normal life and she would be able to get her drivers license and do everything she normally would be able to do as if her eye was never removed. We were absolutely flabbergasted. The only thing we could both do was start crying hysterically. I felt like I was kicked in the stomach. We didn’t know what to say. We couldn’t say anything. Words weren’t forming. How did we go from spots in her vision six months ago to retinal cancer? We were stunned and we felt that taking her eye out at six years old would be so traumatic for her.
(Pictures of the inside of Cailyns eyes. The bottom 2 pictures that are pink, are those of her left eye and normal. All the yellow spots are tumors in her right eye.)
Her Ocular Oncologist told us that because of how advanced her cancer was there really only was one other option and that was IAC or Intra-arterial Chemotherapy. This would be done by inserting a catheter through her femoral artery and feeding it up past her heart, up her neck, and into her eye, where a neurosurgeon would inject the chemo directly to the tumors. This method would not cause all the side effects that systemic chemo would. We were warned that if her tumors were not reduced by at least 90% with the first treatment, we would have to take her eye out immediately because otherwise the cancer would spread to her brain and she would most certainly not survive. Also, after each treatment, she would need to lay flat for 6 hours. This was because children's femoral arteries take much longer to close than adults do, so they were concerned about the catheter site opening back up which would cause Cailyn to either bleed out or lose her leg. Because of her age, we chose to go with the IAC. The hope was to save her vision in her eye.
Two days later Cailyn started her fight against cancer. This little girl was so damn stubborn. And rightfully so. She fought the nurses trying to give her versaid “giggle juice”. She fought the anesthesiologist trying to gas her before putting her under by IV. She fought the nurses when she woke up from anesthesia. She did such a good job laying flat for six hours. Imagine a six year old laying still for six hours. We watched all her favorite movies. We took some naps. We laughed and tried to play little games to keep her occupied.
When the six hours were up, the nurses helped her up, but she looked at me with that look mommy’s know so well, and started vomiting violently. The nurse ran out of the room to get some clean linens and I remembered what her neurosurgeon said earlier in the day about her catheter site. He said that we needed to watch it. Any kind of jerking or heaving could cause her site to reopen and she could potentially bleed out. I don’t know why, maybe it was my own personal training as a healthcare professional but I looked over at her leg, and I could see the catheter site in her femoral artery had busted open under her skin and a very large hematoma was starting to form! You could see it bubble under her skin! I jumped over to her and laid her down and put pressure on the site. Cailyn’s father put the two together and started yelling for nurses and Drs. The room was swarmed at once with staff and they took over for me. I stepped back, hyperventilating, looked at Cailyn who was absolutely terrified, and I fell to the floor. I couldn’t breathe. I was having a full blown panic attack. I’ve saved many lives in my career. I’ve seen so much blood and gore and body parts, but I had not been prepared to witness anything like this with my own six year old daughter.
While the staff helped stop the bleeding, I laid on the floor trying not to pass out. Eventually, I could breathe again. And the nurses stopped the bleeding. Now that everything was calm and stable, the neurosurgeon came in to check her site and her blood flow to her leg. We had earned ourselves an overnight stay at “The Childrens Hospital”.
At her next appointment with her ocular oncologist the following week, we were informed the first testament reduced her tumors by 92%. This was considered a huge success and the rest of her treatment plan was formed.
(This is the picture Cailyns’s ocular oncologist drew to illustrate her eye before her first IAC and after her second IAC. The color yellow indicates tumors.)
Over the next 6 months, Cailyn would have 3 more IAC treatments in which during the third IAC treatment, her femoral artery catheter site would blow for a second time. She would have 12 different individual injections of chemo directly to her tumors while under anesthesia. She would have cryotherapy to her eye. Her retina would detach from the original tumors. They couldn’t fix it until she was in remission out of fear the cancer would spread to other parts of her body. She would have multiple MRI’s under anesthesia. One of which her father and I had to hold her down while she screamed at the top of her lungs for us to help her, while the anesthesiologist gained IV access and put her to sleep. That one was so hard to handle. Her father and I would run out of the hospital crying hysterically. Traumatized isn’t the word. No one can prepare you for how hard it is to watch your baby go through this.
But…. On December 18th, 2013, Cailyn went into remission.
She beat the shit out of cancer. Her ocular oncologist would later tell me that not only was her treatment a success that she used it as an example to teach other Drs about this study. She would also say that because I listened to my daughter when she told me she was having spots in her vision one year ago, and I acted on it when I did, those actions ultimately saved her life. I never forgot those words.
There would be a price to pay tho. Cailyn would have four more surgeries over the next 5 years to fix the damage the cancer caused. She would have her retina repaired. An oil bubble would be put into her eye to hold the retina in place. That bubble would cause a cataract to form. Once the bubble was removed, she had to have the cataract removed and a new lens implanted. The muscle in her eye would weaken and her eye would start to wonder. The new lens ended up becoming cloudy and needed laser treatment to clear it. And after all that, she would eventually lose the vision in her right eye. Cailyn would tell me she doesn’t even remember what it’s like to see out of both eyes. And she always had a sense of humor about it. Until she didn’t.
From September 2013-December 2013, while Cailyn was undergoing chemo, she was going to school where her father lived. He lived 20 minutes away from Wills Eye and Jefferson where she received her treatment and because I lived over an hour away, we thought it would be best for her to go to school closer to the hospitals where she was receiving treatment in case of an emergency. She was in second grade. While she was attending that school, she was isolated by the other little girls in her class. They made fun of her and told the boys, who were the only ones who would play with her, that she was contagious and that the boys would get sick too because of her cancer. You read that right. My 6 year old daughter was bullied by some little girls at her school while undergoing treatment for cancer. When I tell you I was about to go to jail for kicking every second grader in that school and then beating their parents asses, I’m not kidding. I was so outraged that she was being picked on for something so awful. If any of those kids went through one day of treatment like she did, I’m sure they wouldn’t be making fun of her, but I was so enraged that she was so upset, instead of violence I pulled her out of that school immediately.
I enrolled her in school up where I live. And Cailyn made the very big decision at 7 years of age that she did not want to tell anyone at school about her eye. So I met with her principal, school nurse, counselor, and teachers and together we made a plan to keep her cancer a secret. She has been in the same school district since she was in second grade.
Cailyn turned 15 in September 2021. And she to this day has still not told anyone about her cancer out of fear of being teased and isolated again. This school year she started 9th grade in high school. She had mentioned several times that if the cancer ever came back, she just wanted her eye removed. Her eye was now enlarged since she finished all of the surgeries and her one eye was bigger than the other. Her eye would wonder and do whatever it wanted, and people noticed it. So she would stop looking people in the face. She would always have her head down and she would try to cover her eye with bangs.
As much as she tried to hide it, it didn’t work. Classmates would make remarks about her eye. They don’t know about her fight to beat cancer. And teenagers can be so damn cruel. She would come home from school crying and lock herself in her room for the rest of the night. She wouldn’t talk to me or tell me what was wrong. She started having melt downs at school because of comments that classmates were making and although deep down inside I knew, she wouldn’t tell me. I was called to the office twice to pick her up in the middle of the school day. Her counselor and I were at a loss. I had no idea what to do. Mobile crisis was called. She denied wanting to hurt herself. I was so worried about her quality of life over this damn eye and I didn’t know what to do. I wanted to go to the school and kick some high school ass, but I knew that wouldn’t solve anything. Here we go again. My baby being tormented because of a physical abnormality.
(01/2022 The screen on the left is her right eye that Cailyn had cancer in. The left screen is her healthy left eye.)
In the beginning of 2022, Cailyn had her annual ocular oncology appointment. It’s been 8 years since she went into remission. Cailyn finally mustered up the courage to talk to her Dr about her eye. She has images taken like she does every year and her right was basically just useless. It was taking up space but not doing much else. Her optic nerve was frayed looking. Her eye was just a patchy mess of what used to be a perfect eye.
Together we all decided it was time to see a surgeon and have it removed. And so on February 16th, 2022, Cailyn had one last surgery on her eye to remove it. Her surgeon put an implant inside her eye socket so that she could be fitted for a prosthetic eye. She attached four of the six ocular muscles to the implant so that her prosthetic eye would follow her other eye movement. She made her implant the same size as her other eye, and now, both of her eyes are the same exact size. The surgeon pulled tissues from inside her eye around the implant so when Cailyn opens her eye, there is a pink looking eye ball size implant. When she looks at you, she looks like a bad ass zombie.
(Cailyn’s implant 8 days after her eye was removed.)
When I tell you that she is a whole different kid, I’m not even kidding. She has been going out in public with just the implant. She isn’t hiding in her room anymore. She isn’t having the meltdowns that she was having. Currently we are waiting for her prosthetic eye appointment. And this is what brings me here asking for help.
She had her consult last week for her prosthetic eye. What we were not told through all of this is that her insurance won’t cover her prosthetic eye at the time of service and there is no guarantee how much they will cover. I know for a fact Cailyn's insurance does not even have an ocularist in their network. I called them and spoke to them. No one told us how expensive it would be or that we would have to put the entire amount down at the time of the appointment.
Her prosthetic eye is going to cost a total of $6400.00. The eye is $4400.00 and the conformer she needs before the prosthetic eye is $1500.00.
So we are asking for your help. Please, if you can, anything and everything will help to get this badass little girl the eye she needs to live a normal, happy, life. She has fought so hard for so long and I think she deserves the best eye in the whole wide world.
We truly appreciate you all. ❤️
It all started in November 2012 when Cailyn told me that she was seeing spots in her peripheral vision on the right side. I assumed that her little 6 year old mind was trying to get out of going to bed again. I told her that if she woke up in the morning and the spots were still there, we would go to the Drs office.
The next morning, Cailyn confirmed that she was still seeing the spots, so off to the eye Dr we went. I knew something wasn’t right when the Ophthalmologist kept making “mmmm” “ahhh” “well what is that?” comments repeatedly. He looked in her eye long enough to try and draw what he was seeing on a piece of paper. The Ophthalmologist explained he saw something on Cailyns Retina but didn’t know what it was. So he made a phone call to his Retina Dr partner and within the hour we were in his office waiting to be seen. “You see, my office is filled with, well…..” the Retina Dr pointed out all of his geriatric patients to me and he said “I don’t ever see children. I’m going to have to call a Pediatric Retina Specialist at Johns Hopkins, they will know what it is.” The Retina Dr spoke to one of his partners in Maryland and since that was the closest place to us, that’s where we were scheduled to go.
We lived in Newport News, VA at the time. We had only been in Virginia for less that 2 years after relocating from Philadelphia in 2011. We were scheduled to go to Johns Hopkins the following week. Once we got there, Cailyn would undergo hours of testing and imaging. Their conclusion was that she had contracted a worm in her eye and that her Retina encapsulated it. Toxocariasis. The plan was to follow up in 1 month with them. So one month later when we followed up as directed, we were relieved to hear that they still thought that she had the worm in her eye, it had not changed, and we were to follow up with her Retina Dr in Virginia in 6 months time.
June 2013, on the first Friday of the month, 6 months after her last appointment, we followed up as scheduled. We go back to the retina Dr in Virginia that only sees old people. And when he finally takes a look in her eye, he looks at me with a concerned face and says “Cailyns eye is significantly worse. She needs to be seen at Wills Eye in Philadelphia immediately. I will make the arrangements for you to be there Monday.” And with that, the next 5 days were a total blur.
Monday morning, we started our day at Midatlantic Retina which was another Retina Specialist that did see children and they also worked at Wills Eye. We were there for literally 5 minutes. They told us that we needed to go to the 12th floor at Wills Eye Hospital to see Ocular Oncology. 6 hours of testing, Ultrasounds, Scans, Photos, and a ton of waiting. Caitlyn's Ocular Oncologist would walk Into the exam room we were sitting in and she would have an entire entourage of medical students that followed her every single move. Cailyn’s father and I looked at each other and grabbed each other’s hands. She introduced herself and stated “Your daughter has Group E Retinoblastoma and we need to remove her eye immediately.” She handed me a book filled with photos of children that have had their eyes replaced and have had prosthetics made. She continued to tell us that Cailyn would lead a normal life and she would be able to get her drivers license and do everything she normally would be able to do as if her eye was never removed. We were absolutely flabbergasted. The only thing we could both do was start crying hysterically. I felt like I was kicked in the stomach. We didn’t know what to say. We couldn’t say anything. Words weren’t forming. How did we go from spots in her vision six months ago to retinal cancer? We were stunned and we felt that taking her eye out at six years old would be so traumatic for her.
(Pictures of the inside of Cailyns eyes. The bottom 2 pictures that are pink, are those of her left eye and normal. All the yellow spots are tumors in her right eye.)
Her Ocular Oncologist told us that because of how advanced her cancer was there really only was one other option and that was IAC or Intra-arterial Chemotherapy. This would be done by inserting a catheter through her femoral artery and feeding it up past her heart, up her neck, and into her eye, where a neurosurgeon would inject the chemo directly to the tumors. This method would not cause all the side effects that systemic chemo would. We were warned that if her tumors were not reduced by at least 90% with the first treatment, we would have to take her eye out immediately because otherwise the cancer would spread to her brain and she would most certainly not survive. Also, after each treatment, she would need to lay flat for 6 hours. This was because children's femoral arteries take much longer to close than adults do, so they were concerned about the catheter site opening back up which would cause Cailyn to either bleed out or lose her leg. Because of her age, we chose to go with the IAC. The hope was to save her vision in her eye.
Two days later Cailyn started her fight against cancer. This little girl was so damn stubborn. And rightfully so. She fought the nurses trying to give her versaid “giggle juice”. She fought the anesthesiologist trying to gas her before putting her under by IV. She fought the nurses when she woke up from anesthesia. She did such a good job laying flat for six hours. Imagine a six year old laying still for six hours. We watched all her favorite movies. We took some naps. We laughed and tried to play little games to keep her occupied.
When the six hours were up, the nurses helped her up, but she looked at me with that look mommy’s know so well, and started vomiting violently. The nurse ran out of the room to get some clean linens and I remembered what her neurosurgeon said earlier in the day about her catheter site. He said that we needed to watch it. Any kind of jerking or heaving could cause her site to reopen and she could potentially bleed out. I don’t know why, maybe it was my own personal training as a healthcare professional but I looked over at her leg, and I could see the catheter site in her femoral artery had busted open under her skin and a very large hematoma was starting to form! You could see it bubble under her skin! I jumped over to her and laid her down and put pressure on the site. Cailyn’s father put the two together and started yelling for nurses and Drs. The room was swarmed at once with staff and they took over for me. I stepped back, hyperventilating, looked at Cailyn who was absolutely terrified, and I fell to the floor. I couldn’t breathe. I was having a full blown panic attack. I’ve saved many lives in my career. I’ve seen so much blood and gore and body parts, but I had not been prepared to witness anything like this with my own six year old daughter.
While the staff helped stop the bleeding, I laid on the floor trying not to pass out. Eventually, I could breathe again. And the nurses stopped the bleeding. Now that everything was calm and stable, the neurosurgeon came in to check her site and her blood flow to her leg. We had earned ourselves an overnight stay at “The Childrens Hospital”.
At her next appointment with her ocular oncologist the following week, we were informed the first testament reduced her tumors by 92%. This was considered a huge success and the rest of her treatment plan was formed.
(This is the picture Cailyns’s ocular oncologist drew to illustrate her eye before her first IAC and after her second IAC. The color yellow indicates tumors.)
Over the next 6 months, Cailyn would have 3 more IAC treatments in which during the third IAC treatment, her femoral artery catheter site would blow for a second time. She would have 12 different individual injections of chemo directly to her tumors while under anesthesia. She would have cryotherapy to her eye. Her retina would detach from the original tumors. They couldn’t fix it until she was in remission out of fear the cancer would spread to other parts of her body. She would have multiple MRI’s under anesthesia. One of which her father and I had to hold her down while she screamed at the top of her lungs for us to help her, while the anesthesiologist gained IV access and put her to sleep. That one was so hard to handle. Her father and I would run out of the hospital crying hysterically. Traumatized isn’t the word. No one can prepare you for how hard it is to watch your baby go through this.
But…. On December 18th, 2013, Cailyn went into remission.
She beat the shit out of cancer. Her ocular oncologist would later tell me that not only was her treatment a success that she used it as an example to teach other Drs about this study. She would also say that because I listened to my daughter when she told me she was having spots in her vision one year ago, and I acted on it when I did, those actions ultimately saved her life. I never forgot those words.
There would be a price to pay tho. Cailyn would have four more surgeries over the next 5 years to fix the damage the cancer caused. She would have her retina repaired. An oil bubble would be put into her eye to hold the retina in place. That bubble would cause a cataract to form. Once the bubble was removed, she had to have the cataract removed and a new lens implanted. The muscle in her eye would weaken and her eye would start to wonder. The new lens ended up becoming cloudy and needed laser treatment to clear it. And after all that, she would eventually lose the vision in her right eye. Cailyn would tell me she doesn’t even remember what it’s like to see out of both eyes. And she always had a sense of humor about it. Until she didn’t.
From September 2013-December 2013, while Cailyn was undergoing chemo, she was going to school where her father lived. He lived 20 minutes away from Wills Eye and Jefferson where she received her treatment and because I lived over an hour away, we thought it would be best for her to go to school closer to the hospitals where she was receiving treatment in case of an emergency. She was in second grade. While she was attending that school, she was isolated by the other little girls in her class. They made fun of her and told the boys, who were the only ones who would play with her, that she was contagious and that the boys would get sick too because of her cancer. You read that right. My 6 year old daughter was bullied by some little girls at her school while undergoing treatment for cancer. When I tell you I was about to go to jail for kicking every second grader in that school and then beating their parents asses, I’m not kidding. I was so outraged that she was being picked on for something so awful. If any of those kids went through one day of treatment like she did, I’m sure they wouldn’t be making fun of her, but I was so enraged that she was so upset, instead of violence I pulled her out of that school immediately.
I enrolled her in school up where I live. And Cailyn made the very big decision at 7 years of age that she did not want to tell anyone at school about her eye. So I met with her principal, school nurse, counselor, and teachers and together we made a plan to keep her cancer a secret. She has been in the same school district since she was in second grade.
Cailyn turned 15 in September 2021. And she to this day has still not told anyone about her cancer out of fear of being teased and isolated again. This school year she started 9th grade in high school. She had mentioned several times that if the cancer ever came back, she just wanted her eye removed. Her eye was now enlarged since she finished all of the surgeries and her one eye was bigger than the other. Her eye would wonder and do whatever it wanted, and people noticed it. So she would stop looking people in the face. She would always have her head down and she would try to cover her eye with bangs.
As much as she tried to hide it, it didn’t work. Classmates would make remarks about her eye. They don’t know about her fight to beat cancer. And teenagers can be so damn cruel. She would come home from school crying and lock herself in her room for the rest of the night. She wouldn’t talk to me or tell me what was wrong. She started having melt downs at school because of comments that classmates were making and although deep down inside I knew, she wouldn’t tell me. I was called to the office twice to pick her up in the middle of the school day. Her counselor and I were at a loss. I had no idea what to do. Mobile crisis was called. She denied wanting to hurt herself. I was so worried about her quality of life over this damn eye and I didn’t know what to do. I wanted to go to the school and kick some high school ass, but I knew that wouldn’t solve anything. Here we go again. My baby being tormented because of a physical abnormality.
(01/2022 The screen on the left is her right eye that Cailyn had cancer in. The left screen is her healthy left eye.)
In the beginning of 2022, Cailyn had her annual ocular oncology appointment. It’s been 8 years since she went into remission. Cailyn finally mustered up the courage to talk to her Dr about her eye. She has images taken like she does every year and her right was basically just useless. It was taking up space but not doing much else. Her optic nerve was frayed looking. Her eye was just a patchy mess of what used to be a perfect eye.
Together we all decided it was time to see a surgeon and have it removed. And so on February 16th, 2022, Cailyn had one last surgery on her eye to remove it. Her surgeon put an implant inside her eye socket so that she could be fitted for a prosthetic eye. She attached four of the six ocular muscles to the implant so that her prosthetic eye would follow her other eye movement. She made her implant the same size as her other eye, and now, both of her eyes are the same exact size. The surgeon pulled tissues from inside her eye around the implant so when Cailyn opens her eye, there is a pink looking eye ball size implant. When she looks at you, she looks like a bad ass zombie.
(Cailyn’s implant 8 days after her eye was removed.)
When I tell you that she is a whole different kid, I’m not even kidding. She has been going out in public with just the implant. She isn’t hiding in her room anymore. She isn’t having the meltdowns that she was having. Currently we are waiting for her prosthetic eye appointment. And this is what brings me here asking for help.
She had her consult last week for her prosthetic eye. What we were not told through all of this is that her insurance won’t cover her prosthetic eye at the time of service and there is no guarantee how much they will cover. I know for a fact Cailyn's insurance does not even have an ocularist in their network. I called them and spoke to them. No one told us how expensive it would be or that we would have to put the entire amount down at the time of the appointment.
Her prosthetic eye is going to cost a total of $6400.00. The eye is $4400.00 and the conformer she needs before the prosthetic eye is $1500.00.
So we are asking for your help. Please, if you can, anything and everything will help to get this badass little girl the eye she needs to live a normal, happy, life. She has fought so hard for so long and I think she deserves the best eye in the whole wide world.
We truly appreciate you all. ❤️
Organizer
Nicole Chaisson
Organizer
Green Lane, PA