Jason Saltzman

Hi,

My name is Jason. My daughter Dana turned two in October and has unilateral, non-hereditary retinoblastoma (RB). I live in Toronto, about a 15 minute drive from Sick Kids, with my wife Heather and my five year old son Michael.

In early July 2005, when Dana was about 8 months, a gym teacher asked whether we had noticed that Dana had a lazy eye. We had not noticed, but were surprised to learn that others, including my mother in law had noticed it before.

At Dana's scheduled 9 month check up in late July, our pediatrician told us not to worry as lazy eyes were common in children under the age of one and that it would go away on its own in time. My wife and I were both relieved, but my mother in law was not and insisted that we contact a family friend who was a retina specialist.

Over the phone, our friend confirmed that lazy eyes were fairly common in young children and typically went away on their own. However, he was not comfortable making a diagnosis over the phone, so my wife made an appointment later that week on August 9.

August 9, 2005 turned out to be a day that we will never forget. Once our friend put drops into Dana's eyes, he knew that she had RB. He immediately sent us to his local hospital for a cat scan. We thought he was sending us for the cat scan to rule out RB, however he later told us that, given the size of the tumour, he was worried that the cancer had spread to Dana's brain and wanted a cat scan to make such determination. Once we had the cat scan in hand, our friend, now reasonably comfortable that the tumour had not spread, explained that Dana had RB and that Dr. Gallie, the leading RB expert at Sick Kids, would see us that afternoon to determine the appropriate treatment options.

We drove to Sick Kids and met Dr. Gallie and her team. Dr. Gallie confirmed that Dana had RB and advised us that given the size of the tumour, the only viable treatment was enucleation. Dr. Gallie explained that she was fairly sure the tumour had not spread and appeared to only be in Dana's left eye. She assured us that people function normally with sight in only one eye and that with the quality of prosthetics people would not be able to tell that Dana had a prosthetic eye. Looking back and given how Dana has been the past 18 months, I realize that everything that Dr. Gallie said was true. However at the time, it felt as though our world was coming to an end. I could not fully comprehend how Dana would be able to see or function normally if she had only one eye. I also could not understand how a baby that seemed so healthy could have a life threatening condition, or how it could be that neither my wife nor I realized it. It is hard to believe, but after only a few hours, things started to sink in and we realized that we needed to move forward and focus on the surgery and ensuring that Dana would get better. Removing Dana's eye was no longer the problem; confirming that the cancer had not spread and was only in one eye became the real issue.

The surgery was set for the following Wednesday, August 12. I do not think that anything can prepare a parent for the helplessness, pain and fear they feel when they handoff their child for major surgery. I can still picture the "x" Dr. Gallie wrote above Dana's left eye to make sure she removed the correct eye and the feeling of complete uselessness as I sat unable to protect my baby girl. What was most frightening was that we were told that within about 10 minutes, Dr. Gallie would be able to confirm whether the cancer had spread or whether there were any small tumors in Dana's right eye. If tumours were found in Dana's right eye, then her RB would not have been unilateral as expected but bi-lateral which would have significant implications for Dana's immediate treatment as well as her health and treatment throughout her lifetime. Shortly after handing Dana off to Dr. Gallie, we got our first good news, the tumor had not spread and no tumors were in her right eye. After pacing for about three hours, the surgery ended and we ran to see Dana in recovery.

We had been told how resilient kids are and how most kids bounce back from the surgery within two days, however, we were still a little sceptical. It was hard to believe, but Dana was back to herself by that evening and fully off of any pain medication by the following morning. Dana recovered so well and so quickly, that she actually started crawling for the first time in her crib at Sick Kids the morning after surgery.

The following day we took Dana home and two weeks later received the confirmation that we were waiting for - the genetic testing confirmed that Dana's RB was non-hereditary. Since the RB is non-hereditary, Dana only needs to see Dr. Gallie every 6 months for awake appointments in the Eye Clinic.

RB has not slowed Dana down at all. She is an extremely active little girl. She started walking shortly after she turned one and has not stopped running and jumping since. She does swim, dance and sports classes, and even went tubing behind a motorboat this summer. We frequently get comments how beautiful Dana is and in particular that she has gorgeous blue eyes.

Looking back on things, my wife and I realize that while it is still hard to believe that Dana has RB and lost an eye, in many ways we feel fortunate that things turned out the way they did. If the gym teacher had not said anything, if our paediatrician had given us a referral which would have taken six months, had we not had a family friend who was a retina specialist or had my mother in law not pushed us to call our family friend, we probably would only have realized there was a problem when the tumor had spread and things could have been terribly different at that point.

Following Dana's surgery and her amazing recovery, I felt a need to reach out to others affected by RB and to get involved in RB awareness. In the past 18 months, I helped arrange daycare for the RB Symposium that was held in May at Sick Kids, raised money for RB through family and friends, helped coordinate the RB Picnic at Centre Island in July and recently joined the Board of Directors of the RB Society. During my involvement with RB, I have realized two things that I would like to share: (i) unless people are willing to help out and get involved, it will be difficult to create a forum for RB families to meet socially or to further RB awareness, and (ii) it is easy to raise funds for RB, all you need to do is ask, so I encourage people to try and get involved in RB.