Diagnosis: Retinoblastoma
Cannon was born on October 1, 2012; perfect, healthy, and immediately spoiled by two older sisters. We did not notice anything unusual about him, nor detect anything off in pictures until January 2013. I noticed he did not track toys well and while I had “that” feeling I wrote it off as his potential inheritance of my sister’s vision problem, making a mental note to mention it to the doctor at Cannon’s next checkup.
That checkup came on January 28, 2013 with our local, small town doctor, Dr. Holmes who I knew well.
I decided not to mention the tracking problems because my own inner monolog convinced me the doctor would just say it is a baby’s natural nearsightedness. Ironically, the eye exam was first- and last. Dr. Holmes was clearly concerned and asked my permission to bring in the other doctor, followed by nurses, and staff to see this anomaly: the Glow.
I asked him to be straight with me; Cannon was my third child and I have a medical background. He admitted he suspected a tumor, but he had never seen this before, so we needed a specialist. We were referred to Dr. Linda Lawrence in a neighboring town. The following day, the news was confirmed: it was cancer.
Dr. Lawrence contacted, Dr. Carol Shields at Wills Eye Hospital in Philadelphia, PA. We meet with Dr. Shields the following Monday. My husband and I flew out to what would become our second home, leaving behind our girls who were 11 and 8 at the time to worry in silence miles away.
We had no idea what to expect. There was certainly no way to prepare for seven adults to hold your child down for an eye exam, leaving his little scratched up face swollen from crying so hard. And there was no way to prepare to be told the largest tumor was quite advanced so chemo must be started immediately.
Dr. Shields was the best. Firm and direct, she made it clear we could save his vision, but it was going to be a long road. And that road immediately sent us to Children’s Hospital of Philadelphia (CHOP) to meet with Dr. Anne Marie Leahey.
At CHOP we were escorted to a room on the outpatient oncology floor. In came social workers, play therapists, P.A.s, and then Dr. Leahey. Dr. Leahey was warm and thoughtful and we had complete trust in her expertise. She held Cannon and bathed us in love and understanding as she laid out the chemotherapy treatment plan for our son.
We watched as he was hooked up and thus began the regimen. Chemotherapy went hand-in-hand with cryo and laser therapy. Then came a radioactive plaque, a hemorrhage that threatened to take his eye, and more cancer seeds.
Cannon was officially placed in remission in July 2017, with follow-ups being done with Dr. Shields. We saw Dr. Leahey one more time because our time with her was over and I cried a little for the first time in this whole ordeal. She had become part of the family- everyone at CHOP had. It was very bittersweet.
The battle is not just his; sure he fought the physical one but we have put the girls through it all as well and their battle is emotional, often silent, and even more often forgotten. Siblings feel the effects. They watch their parents struggle in more ways than one, while they bravely wait, observe, and hope.
Cannon does have the genetic RB13 mutation so this will be a lifelong endeavor. But for now, we simply watch him closely, have yearly screenings to include bloodwork and MRIs, and we just let him be a boy. He is sweet, caring, imaginative, and full of life.
Cancer is ugly but through it all you see the good in people. I owe Dr. Holmes, Dr. Shields, Dr. Lawrence, and Dr. Leahey everything. I could not have asked for a better team to care for my child. I would not change anything.
My advice to parents, especially moms, is to trust your gut. If something seems off don’t downplay it. While I had intended to mention Cannon’s vision to Dr. Holmes I had a whole internal dialog convincing myself that I shouldn’t worry. Don’t let your internal dialog keep you from voicing concerns whether it be about vision, learning, gait, or anything involving your children. You are not crazy; you are a mom.
I believe every cancer family becomes an advocate for research and awareness. I consider those of us who have had retinoblastoma in our lives to be relatively lucky despite the above and aforementioned. Before Cannon’s diagnosis, I had never heard of the Glow. While I never noticed the “Glow” prior to his January appointment, I did go back through pictures and found photos showing a Glow up to a month prior. If only I had known then what this Glow was indicating. I was not aware that the golden reflection that can show in the pupil with flash photography can be the sign of more than twenty different conditions of the eye. I am thankful Dr. Holmes knew the “Glow” was an important indicator something was wrong. I now share the Glow photos I find of Cannon and take every opportunity to educate people about leukocoria. You simply never know who may be reading your post for the first time.
