Charlotte’s glow started when she was about 8 months old. I (her mother) started to see
a reflection in her left eye when she was in her walker and the light would hit it just right. No
one else in the family could see anything at this point. I expressed my concerns to her
pediatrician and he looked in her eye with his scope, but did not find anything of concern.
Charlotte’s Dad, Joe, says he remembers me bringing up the reflection in her eye to this
pediatrician twice, but unfortunately our concerns were not documented in any of the progress
notes.
Around Charlotte’s first birthday our insurance changed requiring us to find a new
pediatrician. I was excited to discuss the reflection I was noticing to a new doctor in the hopes
of finding some answers. I knew something was wrong and would stay up at night researching. I
remember hoping it was just a cataract or something minor but feared the worst. I took many
flash pictures of Charlotte to try to catch the glow on camera, but was never successful. Or so I
thought.
The second appointment with this new pediatrician was just after Charlotte’s first
birthday. Joe and I brought up our concerns about the reflection we were noticing. By this
time, Joe could also see the reflection in Charlotte’s eye when the light would catch it in certain
directions. The pediatrician looked in her eye with the scope, said she looked fine, and walked
out of the room. Frustrated, I then took the scope and looked in my baby’s eyes myself and
could tell they were not the same color. There was something different between the two eyes. I
knew something was wrong and determined to find answers, made an appointment with an
Optometrist.
Luckily, we found Dr. Alex Elson at 17 th Street Optometry in Tustin, CA. He listened to
our concerns and took them very seriously. Dr. Elson dilated Charlotte’s eyes, an almost
impossible achievement for a one-year-old! Charlotte would not let him come near her with a
scope or take pictures, but we could see the reflection in her eye across the room after her eyes
were dilated! Dr. Elson was very concerned and took his time to type up a referral for us to get
into a specialist at Kaiser as soon as possible.
Charlotte was soon seen by Dr. Shah in Kaiser’s Pediatric Ophthalmology department.
Dr. Shah did an exam and ultrasound and was able to see a tumor in Charlotte’s eye. The tumor
was large, 50% of her left retina. Dr. Shah did his due diligence to find and refer us to a
specialist. That very day he connected us to Dr. Thomas Lee and Dr. Jesse Berry, the amazing
Ophthalmology team at CHLA. That night, Nurse Kathy was on the phone with us from CHLA’s
team to prepare us for what to expect next.
After Charlotte’s first eye exam under anesthesia (EUA) at CHLA she was diagnosed with
unilateral group D (A-E) retinoblastoma. Charlotte had cancer of the retina. After meeting with
the oncology team a port was placed and systemic chemotherapy began two weeks later.
Unfortunately, the tumor in Charlotte’s left eye was stubborn to treatment. At first the
systemic chemotherapy seemed to be working, but then it didn’t. Dr. Berry tried everything she
could to get that tumor to shrink. It got smaller but did not show significant enough changes.
We then looked into other options and decided to try Intra Arterial Chemotherapy (IAC). We
planned to travel to AZ for Charlotte to receive this treatment. However, the night before
leaving for AZ, Charlotte spiked a fever and ended up in the ER. I felt a strange sense of relief
not taking her to Arizona. IAC did not feel right to us. After much deliberation, we decided to
cancel our plans to begin IAC. After much thought and discussion, we came to the decision that
enucleation would be the best option for Charlotte. We wanted to give her the strongest
chance for a healthy life from here on out.
Charlotte had her enucleation on June 6th, 2022 and became cancer free! She goes for
follow ups with Dr Berry every 4-6 months to make sure everything remains stable. Stephen
and Sarah Haddad are the artistic oculists who have made Charlotte a beautiful prosthetic. We
are blessed that our girl is healthy and thriving!
We have overcome so much as a family since Charlotte first exhibited her glow. I hope
to share our story with as many families and pediatricians to hopefully speed up diagnosis for
other children and to help save eyes and lives! We hosted our first Alex Lemonade Stand last
June, which was a big success, and we cannot wait to set up the next one. The retinoblastoma
community has become our family and we had the opportunity to meet with other families
through WE C Hope. We hope to connect with more families in the future to support them
through the hard times and celebrate the good times together.
It was about a year from the time we brought up our original concern to the pediatrician
until Charlotte was diagnosed. We often wonder, could Charlotte’s eye have been saved if she
was diagnosed sooner? However, we have come to a place with no regret or blame. We are
determined to move forward and beyond her cancer diagnosis. And we hope the research from
Charlotte’s case will make an impact to help children who are just discovering their own glows
find an earlier diagnosis.
