Danielle’s Story – told by her mother, Julie
The retinal surgeon looked at Danielle and sent us immediately to SickKids hospital to see Dr. Brenda Gallie. He told us this was not his field as he was a surgeon – but did not tell us this was retinoblastoma. Once at SickKids, Danielle was seen by a resident, Dr. Mulvahill. She also had an eye ultrasound before Dr. Gallie had a look at her eyes and broke the news to us about retinoblastoma.
Lisa, the rb team co-ordinator, scheduled Danielle’s eye removal surgery for that Friday morning. She made sure we brought our other daughter, Natalie 3yrs old, with us so they could check her eyes for Rb. We went upstairs for a CT scan to see if the cancer had already spread Danielle’s brain or the tissues around her eye. Then we met Lisa again to get more information on the eye removal peration and what to expect afterwards.
Thankfully Natalie’s eye exam in the clinic showed no sign of cancer, and Danielle’s surgery went smoothly. Dr. Gallie came out part way through to let us know her left eye was tumour free and they would continue with the enucleation. They also did a lumbar puncture and took bone marrow and blood samples to see if the cancer had spread.
Danielle was out of hospital by Monday and back to school by Thursday, looking and acting not much differently than before. She has handled it all so well, as we were told she would by Dr. Gallie – much better than we did really!
About a month after Danielle’s eye was removed, we returned to Toronto to have her prosthetic eye made. Her new eye looked so beautiful, no one could even tell which eye was artificial. All her tests came back negative for cancer and her genetic testing revealed that the cancer was caused by a sporadic mutation, not inherited from us. Natalie no longer needed to be seen in clinic, but Danielle was still checked every 6 months by Dr. Gallie.
Danielle has gone on to lead a normal life. She has participated in sports such as swimming, dancing and figure skating, and was part of the Girl Guide troop in our town. Her visits to SickKids for check-ups spread out from 6 months apart to yearly and now she is only seen every 18 months. She has had 3 prosthetic eyes made as she’s grown and is due for another shortly.
We have been very fortunate that Danielle’s cancer was contained in her right eye and that after her enucleation she was able to go on with life as any child would. We always mader her occasional trips to the city for a check-up into fun visits with shopping and park excursions.
Danielle graduated high school in June 2013 and started college. We couldn’t be prouder of the young woman she has turned into!