Jaylen is a happy child. He smiles at everything! He loves watching Puppy Dog Pals and a few other Disney Jr. shows. He likes to watch his dad playing video games and he loves using his iPad. He also enjoys being outside and going to play with his cousins.
A few months after Jaylen was born he was diagnosed with Bilateral Retinoblastoma. Prior to his diagnosis we had noticed that his left eye was wandering and that there was also a glow in his eyes.
>When we learned of Jaylen’s diagnosis, it was very upsetting because I couldn’t stand the thought of him being unable to see our faces, let alone communicate with me. I am deaf so I depend on American Sign Language to communicate. We decided to be positive and continued believing in him. Today he’s about to be two and he can communicate with me through ASL. He can see a lot of things with his right eye and some parts in his left eye. He received chemotherapy, laser, and cryotherapy as part of his treatment. Jaylen’s experience has made us more familiar with childhood cancer and it has become important to us to keep spreading awareness.
Jaylen hasn’t let his diagnosis slow him down. We are truly blessed with him.
Colt is the most loving and caring child I’ve ever met. He has such a big personality and is so full of life. He loves football, ninja turtles, toy story, playing with his blocks and cars, and most importantly he loves our boxer.
On October 10, 2016 Colt was diagnosed with Retinoblastoma. Hiss left eye was going inward (like a lazy eye). We also noticed his eyes were two different colors and when we would take pictures there was a glow in his left eye. This is a common sign of Retinoblastoma.
He under went 6 rounds of intra arterial chemotherapy. He continues to go under anesthesia every 2 months for eye exams and every 6 months for MRIs under anesthesia. He has lost majority of his vision in his left eye and only has peripheral vision and now wears glasses.
Cancer has allowed us to see things in a totally different way. Everything happens for a reason. I hope by sharing our story another family will benefit from it and maybe catch it sooner than we did.
Jayleah Maia and Jaylynn Mia are my identical twin girls they were born with bilateral Retinoblastoma on Nov 21, 2010. I saw the signs on the youngest twin Jaylynn Mia first, like any mother I would take bunch of pictures of my newborn babies. In many of the pictures she had gold glow on her right eye. I decided to do some test on her by myself. I covered her right eye and nothing would happen but if I would covered her left eye she will get desperate like if you were covering both of her eyes.
I brought these pictures and concerns to their pediatrician at their two month check up. She blew me off saying that is normal and don’t worry about it. She said babies are still developing their eye sight it will get better. Over the next two months things got worse. Before you had to really look close to her eye to be able to notice the problem, by her 4th month, you could tell somenthing was not right just by looking at her her pupil. Her right eye looked clear and you could see the inside of her eye the blood vessels I guess.
When we went for their 4 month check up,as soon as the pediatrician saw her and I told her “I told you it wasn’t normal. It didn’t go away like you said it would.” You can tell by her face that she knew she had messed up. The main pediatrician on that clinic was called and everyone started running around sending forms. She came to talk to me telling me she was sending me to her “mentor”, an eye specialist straight from her office. They were already sending my girls records over there and they were expecting us to go straight there from the pediatrician office.
On my way over there I was worried I knew it was bad, but not in a million years I was prepared to for what I was about to find out. My first thought were my baby twin is blind in her right eye. I was not that scared. I was trying to stay as positive as I could. We got there to the eye specialist and they dilated her eyes. At first we were only their for Jaylynn Mia but as soon as I told the nurse that they were identical twin girls, she told me to fill out a form for her sister too and they dilated both their eyes.
They did some test like I did at home. They covered one eye than the other one. Then they placed us in a dark room. The eye doctor came in and we talked. She examined their eyes. She turned a huge flashlight to their eyes and we got a surprise to notice that the golden glow hit bigger by the eyes being dilated. Both of them had those glows in both of their eyes.
She turns the lights on and she said I am going to refer you to an eye surgeon but I believe your girls have tumors in their eyes. It looks to me that it may be Retinoblastoma. I said to her “tumors”? You mean Cancer? You mean they can die from this? And she said yes cancer but no you don’t have to think about death. Thank God you caught this early so there is a lot what that can be done to save them and save their eyes.
The first thing we did was scheduled E.U.A’s to confirm a diagnosis. Two weeks later we were at Texas Children’s hospital and they had their exams under anesthesia. They were finally diagnosed with Bilateral Retinoblastoma, meaning both girls had it in both eyes. We started chemotherapy and laser, Cryotherapy. Jaylynn Mia had injections of chemo straight to her right eye, which was the worst one. The retina had fully detached and the tumors had already damaged the right too bad. They were not able to save it and she had her right eye enacluated at 18mths old. We have had many more E.U.A’s and still do.
Thank God my twinkies are still alive and enjoying their childhood. We are praying they continue to be stable but with babies born with Retinoblastoma there is a higher risk of developing other type of cancers later on in life. But we have faith, hope and we will continue to pray that doesn’t happen. We will continue to enjoy having our babies with us.
Colton has smiled through everything. I mean everything! He loves to be a boy and play with animals and even in the dirt. He loves to play hide and seek. He absolutely loves the water. He also loves our family dog Gunner. My son sees any dogs and wants to take them home. He also loves fish, toy cars and bouncy balls. He’s the average 2 year old, tough and fearless!
I knew there was a chance he might have Retinoblastoma due to family history. Before diagnosis he had a lazy eye and watery eyes. Because I had cancer as a kid, we were told he might inherit it. So he was checked shortly after birth.He was diagnosed at 11 weeks old on July 10th 2015.
Colton has gone through systemic chemotherapy and laser therapy with ICG dye (green dye) to add pigment to his tumors for a better laser response. His first year of life he received laser ever 2-3 weeks. When he was two, it was every 3-4 weeks. As of June, he is now down to every 3 months.
The biggest struggle, aside from financial, would have to be my son’s allergy to the “go to” chemotherapy drug for his cancer. His tumors were also so light in pigment that the laser was not being absorbed well. The stress of feeling alone and having little support was also hard. With my son’s type of cancer we don’t see clinic much. It’s always surgery for eye exams and treatment. So meeting other cancer families is almost impossible. Needless to say the beginning of our journey was very very lonely.
I have two other children at home and during diagnosis there were times I would go weeks without seeing them. Since finding out Colton is finally stable after 2 years, we have tried to rebuild our bonds with our kids and finally have a sense of “normal”.
Colton has strolled though his life not knowing anything else. He has grown through infancy to toddler stage with the same hospital staff. Many of the staff members know him by name as soon as they see him. Some nurses have seen him grow up and my son loves them. Colton is the bravest kid I know!
It all started in March or 2016 when Damian’s eye started to become lazy. I didnt think anything of it since my other son also had a lazy eye. He had eye muscle surgery to correct it and i shrugged it off as it being that. Damian would probably need surgery too, I told myself.
A few months passed and one day in the kitchen, Damian looked up at me and I saw a small grey glow in his eye. It worried me. Then another month passed and the glow got bigger and noticeable. I started to do my research and found it could be many things, one of them a rare eye cancer called Retinoblastoma. When I took him to the doctor, she looked worried and said it could be retinoblastoma. She sent us immedietly to the eye doctor across the hall. The eye doctor did an ultrasound and told us there was a tumor in his eye and that he was already blind. We needed to go to Houston, Texas asap to see the eye doctor there. We were warned that most likely he would have his eye removed.
The doctor in Houston recommended he have his eye removed and we went ahead and did that. Then about a month later his team decided he should complete 6 rounds of chemo as precaution, in case any small tumors might have gotten out into his body. So in November 2016 he began treatment. He finished in March 2017.
He has had 3 clear scans ever since and many clear eye exams in his remaining eye. They did freeze a suspicious spot on his remaining eye but never knew for sure what it was. He did great with chemo. He never needed a blood transfusion and his counts were always good. He handled chemo like a champ with only a little nausea and constipation.
Our family had a hard time with his diagnosis. I also lost a baby at 5 months pregnant during that time…..but we got through it and we are doing good now. Damian is a thriving energetic smart silly boy. Having one eye never stopped him nor does it affect him.
In December of 2014, when Eastyn was only 14 months old, our friend was babysitting. She called and said something was wrong with Eastyn’s eye and his pupil was missing. So I texted the eye doctor, a family friend, and he wanted a picture sent to him. After looking at the photo, he said his eye looks fine but he would like to see him in his office. This whole time I’m thinking it is just a lazy eye. The soonest I could get Eastyn in was Dec 25th in the morning. He looked in Eastyn’s eye and said he has a detached retina or a mass behind his eye. He looked at me and said he would be back. When he came back to see us, I was already freaking out. He wanted us to go see a specialist and quick!
Later that day, we went to the eye specialist with my parents, Eastyn’s Mimi and Papa. Mimi, being a pediatric oncology nurse, knew what it was and wanted to be there. The doctor examined him and then looked at us. That’s when they said he has cancer… my heart just sank and fell into pieces. The doctor said go enjoy the holiday but I didn’t know how we could.
We were back at the hospital few days later for an inital evaluation under anesthesia. After his evaluation, we discovered that he had cancer behind both of his eyes. It was recommended that Eastyn received treatment in Philly or Miami. We chose Miami and left on the 1st of Jan in 2015.
We were in Miami for two weeks before they started any kind of chemo on him. The doctors there thought they saw a mass in his brain. They went ahead and did systemic chemo on him. He did chemo every 3 weeks for 4 months. So we were traveling every 3 weeks to Miami. Then in July of 2015, they saw the tumor getting closer to his brain. They said the best thing for him was to remove his left eye. He will never know any different because he has been blind in that eye for awhile.
The tumor was still there on the right eye so they tried the IAC chemo, which goes directly to his eye. They did 3 rounds of that and still the tumor was still there so they did injections into the eye. They did those for about a year and then stopped doing them. He got his port removed in 2016 and July of 2017 he was told he is in remission!
The main obstacle we had to face as a family was trying to survive on one income. As I was not working near as much because I was having to travel every 3 weeks from Wichita, Kansas to Miami, Fl. Then when we got home his counts were so low he would get put in the hospital. So I was out of work for 2 weeks a month. It actually brought his dad and I closer while going through the cancer journey. A week after hearing the words “Your son is in remission.”, his dad asked me to marry him.
Eastyn is striving through life like a normal 4 year old now you would never guess he has one eye and or had cancer!!
