In an earlier post, we explored how one baby was diagnosed with Pediatric Retinoblastoma. This is a continuation of that story, where we delve into treatment of the disease.

Upon Norah’s diagnosis of Pediatric Retinoblastoma, Rachel Celinski and her husband were now faced with the reality of having to put their 6-month-old daughter through cancer treatments. The first step was to find a specialist in the care and treatment of the disease.

The Celinskis were referred to the Bascom Palmer Eye Institute in Miami.

“It turns out there are very few clinics that treat Pediatric Retinoblastoma in the U.S. We were lucky that one was in Miami. Since we live in Orlando, it wasn’t too hard to get to and from appointments as it would be if the specialist was located across the country.”

Upon meeting with the team at Bascom Palmer, the Celinski’s were given some startling news: the tumor was likely present in Norah’s eye since birth and there was a chance treatment wouldn’t work and Norah would lose her eye.

The Treatment Plan

Norah’s treatment consisted of intra-arterial chemotherapy. The oncology team used a very thin catheter line, inserted through Norah’s groin and threaded up to her eye, to “spot-treat” the tumor. This procedure limits chemotherapy exposure to the rest of the body and is very effective on Pediatric Retinoblastoma.

“Norah had a great response to treatment and the tumor started to shrink right away. We were lucky. Many kids don’t respond that well.”

Treating Pediatric Retinoblastoma

Norah’s intra-arterial chemotherapy is a relatively new treatment approach. Other treatment methods include:

  • Systemic chemotherapy.
  • Periocular (subtenon) chemotherapy. Used in conjunction with systemic chemotherapy, this approach injects treatment drugs directly into the tissues surrounding the eye.
  • Intravitreal chemotherapy, where chemotherapy drugs are injected directly into the vitreous humor inside the eye.

As the Celinskis discovered, finding a good Pediatric Retinoblastoma clinic is hard; there aren’t very many clinics that treat the disease. They include:

  • St. Jude Children’s Research Hospital in Memphis, TN.
  • Memorial Sloan Kettering Cancer Center in New York, NY.
  • Phoenix Children’s Hospital in Phoenix, AZ.
  • Emory Eye Center in Atlanta, GA.
  • The Dana Farber Cancer Institute in Boston, MA.
  • The Children’s Hospital of Philadelphia, PA.
  • The Children’s Hospital of Los Angeles, CA.
  • Cincinnati Children’s Hospital in Ohio.
  • The University of Chicago Medicine Center in Chicago, IL.
  • The Sidney Kimmel Comprehensive Cancer Center at John Hopkins Hospital in Baltimore, MD.
  • Children’s Memorial Hermann Hospital in Texas.

Norah’s Current Status

After the initial treatment, Norah needed to come in for maintenance treatment every 3 weeks. Now, at 2 and a half years of age, she has follow-up treatments every 6-months. Her current status is “not quite remission, but there is no tumor activity.” The tumor is not resurfacing, but she has lost all central vision in her right eye. She can still see, using her peripheral vision. At every appointment both of her eyes are checked since it’s not uncommon for Pediatric Retinoblastoma to spread to the other eye.

There’s a treatment Norah’s family can pursue once she is older to help align the eyes (the appear slightly lazy) but “she’s never going to regain her central vision. But she’s adapted. The eye is really remarkable.”

Up next: Part 3 of Rachel and Norah’s Story: Seeking Legal Help From An Orlando Medical Malpractice Attorney.