Chloe’s Glow Story

Diagnosis: Bi-lateral Retinoblastoma

Trisha says that March 3rd of 2011 was the day their lives changed forever.

Trisha’s daughter, Chloe, had seen her pediatrician a few days earlier for a scheduled nine-month well visit.  At this exam her pediatrician, Dr. Draker became concerned as he did not find a normal red reflex in Chloe’s left eye.  He sent them to see a pediatric ophthalmologist to make sure all was normal with her eye.  Trisha says she will forever be grateful to Dr. Draker for this referral.

Trisha was concerned about the visit and tried to research what the possibilities could be online, she found one of many possibilities could be that Chloe has an eye cancer called Retinoblastoma. Her husband assured her she needed to wait to see the doctor and that it probably was nothing at all. It did not take long into the visit, however, that Trisha’s worry began to grow.  The ophthalmologist was very thorough and focused while examining Chloe’s eyes and Trisha knew by the energy in the room something was not right.  After some time, he left the room and brought back his colleague for a second opinion.  Together, the doctors gently told her what no parent wants to hear… “I am very sorry; your daughter has cancer.”

Chloe was diagnosed with bi-lateral Retinoblastoma.   She had cancer in both of her retinas.  They explained that this type of cancer, while rare, most often affects children under the age of five.  RB is very serious.  It can lead to blindness and even death if not treated in time.  

They were referred to the closest hospital that treated Retinoblastoma, Wills Eye Hospital in Philadelphia.  Two days later, after an MRI was administered, the family traveled the 5 1/2 hour drive to Philadelphia for the first time.  

Once at Wills, they were met by the amazing Dr. Carol Shields.  Dr. Shields performed an exam under anesthesia and confirmed Chloe’s RB diagnosis.  They were told that Chloe had two grade C tumors in her right eye and five grade D tumors in her left.  Wasting no time, Dr. Shields advised they immediately begin systemic chemotherapy.   The very next day Chloe’s chemotherapy regimen began.

For the next six months Trisha, Travis and Chloe would make the journey to Philadelphia every four weeks.  They would spend Monday at Wills Eye Hospital with Dr. Shields for an exam under anesthesia (EUA) to check her progress and for cryotherapy treatments.  Then they would travel to Children’s Hospital of Philadelphia (CHOP) to meet with another wonderful doctor, Dr. Ann Marie Leahey, for two days of chemotherapy.  Finally on Thursday Chloe would receive a Nulasta injection to help support her white blood cell count and then travel home again for three weeks to rest and recover between sessions.

Chloe amazed her parents through all of this, as she did great.  Chloe did get sick, have bone pain, and lost her hair but through it all she smiled and laughed and even helped her parents stay strong at times. Chloe is a true superhero.  Chloe finally ended her Chemotherapy the last week of July.  The family was thrilled.  But that happiness was short lived.  At her October exam, they discovered her tumors had come back very aggressively in her left eye.  They needed a new plan of attack.   

Trisha and her husband had to make a very difficult decision.   They could either go through another six months of systematic chemotherapy or try a new therapy called Intra-Arterial Chemotherapy (IAC).  With IAC, the doctor’s thread a catheter through the leg up around the brain and administer chemo directly into the cancerous eye.   Trisha says this was the hardest decision her and her husband ever had to make.  Given only one night to make up their mind, they made the decision to begin IAC.

Chloe went through three rounds of IAC.  Again, she did very well with these treatments.  In December of 2011 the family was told once again that Chloe’s cancer was gone.  She was in remission!

At first Chloe would travel back to Philadelphia for checks every three months.  That stretched to every six months and now happily to every year.  Chloe is eleven years old and is still in remission!

While Chloe is completely blind in her left eye, she has 20/20 vision in her right!  She does not let her limited vision hold her back in any way.  She loves cheerleading, skateboarding, and snowboarding.  She is in the sixth grade and is a wonderful student.  Trisha says that Chloe has no memory of her time fighting RB. 

Soon after Chloe was diagnosed, Trisha found several photos of her with the Glow.  At the time of the photos, she had no idea what this Glow was indicating.  Trisha is now determined to spread awareness of the Glow to as many people as possible.  She wants to make sure other parents do not miss this potentially life saving sign.  She is very thankful that even though she was not aware of the Glow, she had incredible doctors who discovered Chloe’s condition in time and helped guide her through her treatment.