Hadley’s Glow Story

Diagnosis: Bilateral Retinoblastoma

Jennifer and Grant’s second daughter, Hadley, was a healthy and very happy baby.  However, when Hadley turned five months old, Jennifer started to notice that Hadley’s eye would occasionally drift.  This “lazy eye” was very slight and only on occasion. So infrequent that Jennifer was the only one in her family to notice it.  Having a family history of Amblyopia , Jennifer was not overly concerned of what she was noticing but decided to bring Hadley to an ophthalmologist to correct this potential developing condition as early as possible.  She is forever grateful she made this appointment. 

Jennifer says it was not long into the appointment that their entire world changed forever.  After the ophthalmologist dilated Hadley’s eyes, she was expecting the doctor to confirm that she was developing Amblyopia and to suggest patching or glasses.  However, the doctor took a very somber tone and gently told her that Hadley had a tumor in her right eye. She believed Hadley had cancer. They were referred to Wills Eye Institute in Philadelphia to see Dr. Carol Shields.

At Wills, Hadley had an ultrasound of her eyes which confirmed the diagnosis of Bilateral Retinoblastoma.  She had five tumors in her right eye (stage B) and one tumor in her left eye (stage A). The good news was they had caught the condition early.  Hadley was also referred to CHOP (Children’s Hospital of Philadelphia) where she would consult with Dr. Leahey, her oncologist, who works closely with Dr. Shields. They both advised that Hadley undergo six rounds of systemic chemotherapy.  The family would need to travel to Philadelphia every month and stay there for two days while the chemotherapy was administered at CHOP and she would get an EUA done at Wills. Philadelphia is four hours from their home in Bluemont, Virginia. 

Hadley started her chemotherapy regimen in June of 2018.  After the first treatment her tumors shrunk significantly.  She completed her treatment in November of 2018. Since then, there has been no evidence of re-growth.  Hadley will have an MRI twice a year until she is five years old. She also has an EUA every four months to make sure all is well.

Today Hadley is 18 months old and doing very well.  She is far sighted in both of her eyes and wears protective eyewear with a prescription to help with this correction.  Hadley also patches for one hour a day to help correct a slight strabismus. She is once again a very active, healthy and happy little girl.  Jennifer says that she loves dancing, playing with her older sister, and reading books.

Both Jennifer and Grant were aware of the Glow but did not take many flash photos of Hadley in the first months of her life.  They were careful not to expose her the bright flash. Looking back they have found a few photos that had the Glow and now that Hadley has been diagnosed they have noticed the Glow in her photos on many occasions.  Not noticing the Glow, Jennifer is very grateful that she listened to her intuition and that she had Hadley’s eye checked by an ophthalmologist. Jennifer and Grant want to share their story to inform other families of the Glow and to also encourage parents to listed to their intuition.  They know that these two things can lead other children to much earlier diagnosis. They are very aware that without the early detection, Hadley’s outcome could have been significantly different. 

For more information and to financially help Hadley’s family, please go to www.gofundme.com/healing-hadley-grace

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