Peggy Gronsdahl

My name is Peggy Gronsdahl. My son, Connor is now three years old, and he has retinoblastoma. My husband, Kevin, daughter, Megan (five and a half years old), Connor and I reside on a farm near Assiniboia, Saskatchewan. Assiniboia is a small rural community of approximately 2,500 people, located about two hours south west of Regina.

From the time Connor was four weeks old we noticed a strange reflection in his left pupil. At first we dismissed it as a reflection, but as the days passed it seemed to be more and more noticeable. Of course, we took Connor to our family doctor for his well-baby check-ups at four and six weeks. I mentioned the reflection, but the doctor said she could see nothing to worry about. Then, June 1, 2000 (it’s funny how you remember the dates), just days after Connor’s six week check-up, we were visiting some friends one evening, and I looked into my precious son’s eyes, and what I saw scared me to death. Because of the dimly lit room, Connor’s pupils were fully dilated. His left pupil appeared almost hollow. It was opaque; we could see all the blood vessels at the back of the eye. It was eerie. The next morning I immediately phoned our family doctor in Moose Jaw. She, again said that she had just examined Connor, and could see nothing wrong with his eye. This time I wasn’t satisfied with her answer. I phoned my optometrist in Saskatoon and told him what we had observed. He didn’t want to push the panic button, particularly without examining Connor, but based on what we told him, he thought we should have a doctor examine Connor’s eye right away. Back up to Moose Jaw we went, only to be told a third time that nothing was wrong. I will forever feel guilty about not pushing harder at this point. There is no excuse, except that I so wanted to believe that nothing was wrong that I accepted the doctor’s opinion.

Deep down, of course, I knew that something was wrong with my son’s eye. Not in my wildest dreams would I have imagined cancer, but I knew Connor’s eye was not normal. The following week, I was up in Saskatoon on business, and asked my optometrist to squeeze Connor in for a quick examination. Connor, being a seven week old baby, was not at all obliging: He, for the most part, refused to open his eyes. Again, based on our observations, the optometrist was very concerned. So concerned, that he phoned all over Saskatoon, trying to get an ophthalmologist to see us that afternoon. No one could, or would. The optometrist even phoned the eye clinic at one of Saskatoon’s hospitals trying to get us in there. The ophthalmic resident told him that babies often have “different pupils”, and there was nothing to worry about; he didn’t feel there was any need to see us.

In many ways, this marked the beginning of our journey into the world of retinoblastoma. We left Saskatoon on Friday, June 9, 2000, still with no definite answers, but feeling that people who should know didn’t think we had anything to worry about. When we got home that evening, Connor was very unsettled, and began vomiting repeatedly. It continued all night, and by the next morning, I was again concerned about my son’s health. I took Connor to the hospital in Assiniboia because I was afraid he was getting dehydrated. While discussing Connor’s symptoms with the doctor on call, I mentioned Connor’s eye, and asked him to take a look. The doctor was immediately concerned, as it now appeared that Connor’s cornea had clouded over. He phoned an ophthalmologist in Moose Jaw (at home, on a Saturday), and made us an appointment for 8:00 am Monday morning. We never kept that appointment.

The following morning I awoke to find Connor’s eye swollen to the size of a golf ball. After a brief stop at the hospital in Assiniboia, we were sent to the eye clinic at a Regina hospital. After a torturous examination which involved my holding Connor as tightly as I dared while the ophthalmologist attempted to pry open his eye to get a look, a CAT Scan was ordered. The CAT Scan confirmed the ophthalmologist’s suspicions: Connor had retinoblastoma. The tumour filled the entire eye. The day was Sunday, June 11, 2000.

We met with the pediatric oncologist first thing Monday morning. She indicated, that with our permission, she wanted to contact Dr. Brenda Gallie and Dr. Helen Chan, two specialists in the field of retinoblastoma associated with the Hospital for Sick Children in Toronto. We, of course, agreed. Early that afternoon, the oncologist returned to say that after consulting with the Ontario doctors, all agreed that we needed to be in Toronto as soon as possible. As a result of a truly heroic effort on the part of the social worker in Regina, Kevin, Connor and I got the last two seats on a plane heading to Toronto at 6:00 pm that evening.

For the next few days Connor underwent a battery of tests. The doctors were very concerned that the cancer had spread outside the eye (largely because of the swelling), and preparations were made to begin chemotherapy. Enucleation of Connor’s left eye was scheduled for Friday, June 16, 2000. I will never forget the Thursday evening, before Connor’s enucleation, both Dr. Gallie and Dr. Chan came to Connor’s room (as soon as they walked in I knew the news wasn’t good). They said that the results of Connor’s second MRI appeared to indicate that the cancer had penetrated Connor’s optic nerve: we were now in a fight to save Connor’s life.

The next day was enucleation day. It was a roller coaster ride of incomparable proportions. Nothing can prepare you for that first time they take your child into surgery. You are so utterly helpless. About half way into the surgery Dr. Chan came out with the best news I’ve ever heard. Dr. Gallie had removed Connor’s eye and performed a cross-section analysis of the optic nerve: the cancer had not spread to the nerve.

Following the surgery, we met with Dr. Gallie, Dr. Chan and a host of others to discuss Connor’s situation. As it turned out, Connor was a very lucky little boy. What had happened, the Doctor’s hypothesized, was that the tumour had gotten so large that it was applying immense pressure on the optic nerve. The blood vessel that feeds the eye, which runs through the optic nerve, eventually succumbed to this pressure, and clotted at the base of the optic nerve (this is what the MRI was picking up). The blood clot effectively killed the tumour, and the eye. The doctors’ believed that the swelling which was present in Connor’s left eye was his body’s reaction to the dead tissue. It would be several days before test results would be available to confirm this hypothesis, though in the end the Doctor’s were proven right.

Over the course of the next fifteen months our family made eleven trips to Toronto, three with our daughter, Megan, for routine Examinations Under Anesthetic (EUA’s). Connor continued to defy the odds, and showed no sign of tumour development in his right eye. Finally, in September, 2001, we received the much anticipated good news. After an exhaustive search, Dr. Gallie had located the genetic mutations which triggered Connor’s cancer. The mutations were not present in Connor’s blood sample. Connor had non-heritable RB.

Treatment for retinoblastoma is not available in Saskatchewan. There are no ophthalmologists here familiar with the disease. Consequently, we continue to make semi-annual trips to Toronto so that Connor can have his right eye examined. Because of his non-heritable status, the examinations can now be done in clinic rather than under anesthetic. In all honesty, I am oddly comforted by these trips to Toronto. While Connor is at low risk for further tumour development, I like knowing that he is routinely examined by doctors who specialize in retinoblastoma and are among the best in the world.

Today Connor is an energetic three year old who does all the things three year old boys do. His prosthesis is beautiful. Most people are completely unaware that his left eye is a prosthetic. Connor was so young when all this began that life with one eye will be all he ever knows. He already knows that he is different from other people. He knows that when he was born he had a sick eye, and doctors took it out to make him better. Now he has a “special eye”. When Connor is a little older we will tell him the whole story, but right now it’s enough that he understand just how special he is.

Not a day goes by that I don’t remember how lucky we’ve been. Not a day goes by that I don’t think how different things might have been. . .