Norah was diagnosed with unilateral retinoblastoma when she was just five months old. As her mother snapped photos of her little girl dressed up as a pumpkin in Halloween 2009, she kept noticing a white flash in her daughter's right eye when scrolling through the pictures. Uneasily, she recalled a poster in their pediatrician's office from the very first well visits, warning parents about a rare, potentially life threatening eye cancer that affects one in 250,000 children. One of the telltale signs of this cancer was seeing a "white reflex" which appears in the eye in flash photography.
Within a week, it was confirmed by doctors at Johns Hopkins University Hospital that Norah had the cancer and needed immediate and aggressive treatment. Because her disease was caught early, she was able to keep her eye (enucleation often the first course of action with advanced stage or recurrent tumors). Shortly after her diagnosis, Norah's DNA was tested to determine whether the cancer she had was a random genetic abnormality or inherited. Among the "best understood" pediatric cancers according to medical resources, the chromosomal abnormality was either random or inherited, and there were three variations of Rb she was facing: unilateral (affecting one eye, usually sporadic) Bilateral (affecting both eyes and often inherited) or the extremely rare and worst of the bunch, trilateral (affecting both eyes and the pineal gland in the brain).
With 90% certainty the test concluded she had the sporadic form, a tremendous relief to her family, as the inheritable versions can often mean more numerous and aggressive tumors, and require radiation, which carries its own serious long term risks.
Just shy of her first birthday, Norah finished her treatment and had her line removed shortly afterward. She continues to have yearly EUAs and will have her last MRI when she turns five. The EUAs will soon become office visits (read: no anesthesia!), a long-awaited goal.
Excited to be heading to kindergarten in the fall, she's 4 going on 16. She is funny, mouthy and ready for monkey bars at all times. She loves to read, sing, tap dance and do puzzles. She's learning to swim, enjoys skiing, playing hide and go seek, and drawing. Her best pal is her 2-yr old brother, Gus.
She wears glasses and patches for three hours a day, doing so since she was one. All her doctors have been thrilled at how well she is doing -- medically, developmentally and physically.
We are hoping this strange and horrible experience is forever behind us and marvel at the strong little person she is.
We'll forever be grateful for catching her illness early and in such a surprising way, and for the wonderful care she's received from her doctors in Silver Spring, Rockville and Baltimore, MD. We are also thankful for the Rb community of families and survivors. Without the work of organizations like Cookies for Cancer, the next treatment or method of detection may not be found. With pediatric cancer frequently taking a back seat to other funding priorities, we are thrilled to support Cookies for Cancer.