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.
Max is a happy, happy boy! He loves to eat..haha! He loves spicy (super spicy) food and enjoys playing with his little brother. They’re best friends. Max loves trains, fire trucks and music.
Max was abandoned at the gate of the orphanage in China when he was 3 months old, he lost his left eye when he was 1yo, he had treatments for his right eye and also fought different infections while he was in China.
We had just brought Max home from China and on his first eye exam the Dr said he could see something but he wasn’t sure if it was active or inactive so he had to have an examination under anesthesia for a complete check up of his eye.He was diagnosed with a recurrence of Retinoblastoma on July 12th, 2018.
After his diagnosis in July, he had cryotherapy and laser therapy but unfortunately the cancer was spreading. This lead to the decision of enucleating his remaining eye and leaving him completely blind.
We had just brought him home 3 months before the diagnosis, we were still working on attachment and adjusting to his new life. Max didn’t speak English when he came home, all the visits to doctors, tests, hospitals had been very hard on all of us and then in October we had to face the challenge of complete blindness. Through it all Max has been amazing, joyful, always happy and such a strong kid. He has taught us so much. He has been a blessing to our family and to many!
Bella loves to smile and laugh. She loves food, Minnie Mouse, and the song baby shark. She dances as soon as she hears it or any other music. She also loves to grab everything she sees and loves playtime and peek-a-boo.
Bella was diagnosed with Retinoblastoma at 9 days old. I (her mom) had retinoblastoma and knew that she had a 50% chance of carrying the gene for this cancer. I got her screened very early on and that is when she was diagnosed with bilateral retinoblastoma.
Her diagnosis and all of the treatments has given me a lot of anxiety. Bella has had five rounds of chemotherapy, nine months of laser therapy, three rounds of cryotherapy, and enucleation of the eye. Bella has experienced total loss of vision in one eye and I am unsure of how much vision she has left in her remaining eye.
Bella has been fighting since she was born but she is so strong! She is now 10 months old and is doing awesome!
Jayleen she was diagnosed with Bilateral Retinoblastoma at 4 months old. Her left eye was grade E and her right is grade B. She has 4 tumors that are stable right now.
We never really noticed the glow in the eye that is a common sign of Retinoblastoma. Her eye was always cloudy and red around it. It was the most hardest thing we had to overcome and handle since she’s a twin, we had to leave our other newborn Jazmine behind for a month with family.
Jayleen had to have emergency surgery an hour after being diagnosed. That broke me as a mother. Not knowing much about her cancer. After her surgery she had to have chemo the next day and had a bad allergic reaction. They called code blue and I lost it then. After looking for another chemo, they finally found one for her. This time they were ready if she had another allergic reaction. She did! But the nurse was prepared and on the search for another chemo. They finally found a perfect fit this time around. She had 11 cycles of chemo, which she fought without losing her hair.
We still go for MRIs and she goes under anesthesia every 2 months to check for cancer growth. It has been a rough long journey but she fought and we fought harder for her. She’s been sick and hospitalized numerous times but has come a long way. Jayleen has now been stable for 6 months.
Braelyn is the definition of sweet and sassy!! Through treatment every nurse, doctor, or person we met always says how sweet and kind she is. She is the child at the doctors office who had her eye swollen shut, hair completely gone, and IVs hooked all over smiling at you waving, saying “Hi Hi Hi!”. Nothing can bring her happy spirit downs. She laughs at her daddy and silly noises. She loves meeting new friends! Some of her favorite things are Chocolate, the movie the Greatest Showman, and anything music related. She loves to dance and shake her body!
During Braelyn”s 9 month check up the pediatrician noticed that Braelyn was not tracking objects like a normal child her age would. When she would follow an object her eyes would shake. He was also concerned that she was hitting very few of her milestones. At the time she wasn’t even sitting up on her own. We were sent to an ophthalmologist to further get her vision checked which is where we found out that she had tumors in both eyes.
Braelyn has a genetic disorder called 13q deletion syndrome. On the 13th chromosome is the RB1 gene which prevents the eye from getting cancer. This genetic disorder is what caused Braelyns retinoblastoma. There are also many other important parts of her 13th chromosome missing causing her some cognitive and physical delays. She is 2 and a half but can only pull to stand and cruise along furniture. Braelyn is also partially blind in her left eye due to treatment. She also wears protective glasses.
Cancer has changed everything completely. We are so much stronger than we ever were. We love each other more, forgive more easily, always remind each other that the day could be worse and tomorrow will be better. Not only did it change ya emotional but it has caused us to pack up and move our family twice.
Braelyn amazes me because she is always happy. She has remained such a sweet and gentle soul. Not only does she battle cancer but she pushes through her struggles that her genetic disorder causes. She’s so special and I want to do something special for her.
Luna is a force of nature. She has always been the toughest little girl ever. She loves to play with her brother and sister and loves to sing and dance. She loves anything that has to do with music. She is a real grandma and grandpa’s girl. Luna means moon in Spanish and I believe that her name describes her perfectly.
In July of 2018, Luna was diagnosed with bilateral retinoblastoma. Luna’s dad and I both worked full time so family would watch our Luna while we both worked. One day grandma asked if we had noticed something weird with her left eye…it wasn’t focusing like the right eye. We had never noticed anything but we kept an eye on it. One day we noticed it and we called her pediatrician right away. The told us to call her eye doctor and they asked for us to come back to have her eyes dilated for more testing. When they did the exam they suggested seeing a specialist. While we waited to get an appointment with the specialist, Luna had an MRI done. Shortly after, she was transferred to OKC and diagnosed with bilateral retinoblastoma.
She started treatment right away. Luna is doing 6 months of systemic chemotherapy and she had her left eye removed. There was no saving it. She had lost eyesight in that eye and we had no idea. When her eye was removed we saw no difference in her activity. She played and did everything the same. That eye was doing no good for her. We are now getting ready for her 5th rounf of chemo and her prosthetic eye this next OKC visit. Hopefully we will be done with chemo in December. We travel as a family and brother goes when it’s okay to miss school. My 4 year old daughter was supposed to start pre k in August. She will be starting in Jan after Luna’s chemo days are done.
Cancer has changed many things about our family life. We are more united as a family and are more grateful for the little things and the really good days. We’ve always been close but this has brought us even closer. Not only does she have cancer, the whole family has cancer and we are fighting it together.
