Last year at the beginning of the pandemic, Celeste was diagnosed with sporadic unilateral retinoblastoma with a grade D tumor at 20 months old. Celeste underwent multiple exams under anesthesia and multiple forms of chemotherapy.
We started with three rounds of intravitreal chemotherapy. Her tumor showed that she was responding to chemo so then we went on to three rounds of intra-arterial chemotherapy. With the six cycles of chemotherapy, it still wasn’t enough and the tumor showed regrowth.
In September of 2020, we started our journey of systemic chemotherapy. Her tumor showed it was responding to the chemotherapy but at the same time, the tumor she had in her eye was very aggressive. It was a tough battle for Celeste but she finished her seven rounds of systemic chemo.
Within two weeks of finishing chemotherapy, her next exam showed that her tumor regrew back to almost the original size. At this point it was obvious there were no more options left for us so we opted for Celeste to have an enucleation (surgery to remove the eye.) It has now been two months since the surgery and we are trying our best to raise a little girl with confidence to show her that it’s okay to be different.
I first noticed something off about Celeste when I took pictures of her with a flash, her right pupil would reflect a white cast. I didn’t know then that this was a sign of cancer. The main symptom that caught our attention was from the age of four months we noticed our daughter had a lazy eye. We would bring this up to our pediatrician at every well-baby checkup but our pediatrician told us that this was normal and she will “grow out of it.” I asked our pediatrician to refer us to a specialist but she said it wasn’t necessary. A year went by and our daughter’s lazy eye only progressed. I asked again to be referred to a specialist and our pediatrician finally listened. Once we met with the ophthalmologist, she knew right away something was wrong. Our ophthalmologist referred us right away to Children’s Hospital Los Angeles where they then confirmed it was retinoblastoma.
I am angry for my daughter that she had to endure such aggressive treatment it could have been avoided with an early diagnosis. My daughter’s eye could have been saved. I am angry at myself for not being more persistent. I should have fought for my daughter harder but I know there’s no way I could have known it was cancer. That’s why today I am an advocate for childhood cancer.
Celeste is a firecracker. She has endured so much in just her little two years of life and I think she deserves the world and everything good it has to offer.
Hudson is goofy. He loves to play with his toys, watching his sister, and laughing!
At Hudson’s 2 month well check, his pediatrician noticed something “off” about his right eye so he made a referral for us to see a pediatric ophthalmologist. We were able to get in the very next day and as soon as she took a look, she looked up and said “I have terrible news. Hudson has tumors, in both eyes.” I’ll never forget that moment!
She made a call to a retinal specialist who treats retinoblastoma and got us an appointment the very next morning to confirm our worst nightmares. Exactly a week later, we started chemotherapy. It was a grueling six months for him. All the usual things that come with chemo happened to him. He had a loss of appetite, hair loss, nausea and you could just tell he generally didn’t feel well.
He handled it like a champ though and with each and every round, he amazed me even more. Having a child with cancer has completely changed our family. It’s broken us at times but it’s also made us better people and helped us learn to appreciate everything so much more.
Daniel loves to make people laugh and feel better if they are down. He always finds the good in things and makes you realize that you should not stress over little things. He loves soccer and fast cars.
He was diagnosed with Retinoblastoma on May 28, 2013. His pupil looked like a marble and he started having headaches.
Daniel was only one when diagnosed and treated. He doesn’t remember too much but he gets upset when he talks about the fact that he can’t see in both eyes but others can. His sister has vision in both eyes and he often asks why he can’t see in both eyes, we try to talk about the positive but it’s hard because he understands more now.
Finn is a beautiful little boy who loves music and trucks. He is such a happy boy; loves Sesamee Street and Thomas the train. He also loves to read about farm animals and is a very easy going little boy. Due to his prematurity he had a brain bleed and was a little behind with walking and crawling but he is getting there and he is the most determined child ever. He uses a walker right now to walk.
Finn was diagnosed with retinoblastoma at 3 months old. (Sept 20,2016.) He was born at 24 weeks and was having an eye exam to check for ROP due to his prematurity. During that exam they found a large tumor in his right eye that took up his visual field. About 7 months after first finding the tumor in his right eye, they found multiple tumors in his left eye. It is now in both eyes.
We had no idea he had tumors in his eye. Because he and his twin were born at 24 weeks they check for retinopathy of prematurity and do that when the babies are around 3 months old; at that exam they saw the glow and knew right away there was a problem. They did a more intensive exam and found the tumor.
Finn has monthly eye exams under anesthesia. He has had 6 rounds of chemotherapy and gets laser and cryotreatments to the tumors that are still beginning to form. If the laser and cryo are done, it burns the tumor and a piece of his vision away. If it works, chemo does not need to be done. If this treatment plan doesn’t help, we will need to start chemo again. Due to his cancer and treatment, Finn is visually impaired and legally blind although he does still have some vision currently
Cancer has changed our lives in many ways. We had to move closer to the hospital because we were living in a rural area. Now we live with my parents because it’s very expensive to buy a home and live closer to the city. It has put a big financial strain on our family. Cancer has also changed our family in a good way (if cancer can do that). It made us realize not to take life for granted. Make memories that you will always love and share, family is what matters and as long as we have each other to hold on to on those bad days, we will be ok.
From the second Finn was born he was a fighter. He goes through his treatments and exams with ease and has a very calming way about him. He is a living miracle. He keeps up with his twin and they have an amazing relationship and language only they understand.
Alaya is a HUGE family person. She LOVES spending time with her family. She loves to dance, cheer, make slime and anything that she can experiment with. She comes off very shy at first but once you get to know her, she has the heart of gold. She loves helping people out and doing for others. She designs shoes. She likes to paint them. Every person she has come in contact with has said they are instantly drawn to her. It’s something about her that draws people to her. I always get compliments about how sweet, cute, and well-mannered she is.
Before her second birthday, I noticed her right eye was crossing. I also noticed that her pupil appeared to be dilated as well as “glowing” or a haze like color. Eventually it appeared to be an orange color. She was diagnosed with Retinoblastoma on February 28, 2011.
Alaya went through 8 rounds of chemo and countless laser treatments. As of now, she is no longer receiving treatment and her eye has been removed. At the time of treatment we struggled with transportation and money for gas and food for travel.
Alaya has not let the fact that she has endured all of what she has stop her from smiling. She has smiled through it all, which has, in return, brought smiles to our faces. She remained so strong and always prays for her health and thanks God for her survival. She is such a HUGE believer in God.
Hadley is a very happy baby. She loves music (especially Baby Shark) and books. She also loves playing with her sister. She already seems very opinionated and will tell you (or show you) if she doesn’t like something. She is talking more and more each day!
When Hadley was 5 months old, she was showing a little bit of a lazy eye every once in awhile. We brought her to the ophthalmologist and that is when they were able to see a tumor in her right eye. It was very unexpected and shocking news to hear. After that it became a whirlwind and we were advised to seek care in Philadelphia at Wills Eye Hospital and Children’s Hospital of Philadelphia. After an examination at Wills Eye we found out she had 5 tumors in her right eye (Stage B) and 1 in her left (Stage A).
The large tumor in her right eye is in her line of vision so her vision is limited in that eye. She wears protective glasses and we do patching every day. Eventually she will need prescription glasses. But she doesn’t let that stop her!
Hadley underwent 6 rounds of systemic chemo (once a month for 6 months) and during those visits she also had EUAs (examination under anesthesia) to monitor the tumors in her eyes. She also had to have weekly blood work done for those 6 months. She currently has to continue doing EUAs and right now we are at every 3 months. She also has to have 2 MRIs a year until the age of 5. It’s a struggle to watch her go through all of these procedures and it has been hard on her big sister. We have also face a lot more medical bills than we are used to.
We are forced to travel 4 hours away for treatment and it has been hard on our oldest daughter as well as Hadley. But we also realize it has made us stronger and we appreciate things more. Hadley has been a trooper through it all, and it amazes us how strong she is.
