When Tyce was only 6 weeks old, my husband and I questioned his vision. He wouldn’t make eye contact when nursing, his eye movement wasn’t always aligned and he didn’t look at typical things that babies do – we chalked it up to immaturity of the eyes but a sick feeling in my gut remained.
In the very early morning of Monday September 14th (Tyce was just over 2 months old) as Tyce was nursing I pretended to poke his eyes rapidly to see if I could get any response. Anxiety struck me when Tyce didn’t blink or react in any manner when I did this to either eye (I later learned that he didn’t react with his good eye because he did not, nor will ever, have good depth perception 3 feet and closer). Later in the morning, as soon as the optometrist office opened, I phoned my mom (who works there) telling her I needed an appointment for Tyce. She told me that they were completely booked but could see me on Wednesday. Persistently I explained that it couldn’t wait, if only for my own sanity and peace of mind. Our optometrist, Dr Gatrell, squeezed us in at the end of the day and Michael took off the end of his work shift to be there with us. After dilating Tyce’s pupils, shining lights into his eyes and taking a photo of his retina she explained that there was a mass in his eye and that we were going over to see the ophthalmologist in town right away. At that point, nobody put a name to it but it was made clear we needed to be seen soon and the unsaid word that hung heavily in the air was cancer. In that moment I knew there was a sense of urgency as it was long past office hours and yet we were headed to see the specialist with Dr Gatrell. Dr Regan, the ophthalmologist, explained that retinoblastoma needed to be ruled out and that we shouldn’t be too surprised if we were in a bigger center like Calgary or Toronto the next day. It was the first that that cancer had been said and although the no diagnosis was made yet, it seemed a certainty to me.
We felt numb and struggled to make the phone calls to immediate family to let them know what was happening. We were drained, scared and nervous for the wait ahead. During the evening I think it all hit me and I fell apart. I felt like I couldn’t breathe, I could hardly stand, I sobbed and felt an overwhelming sense of grief. I don’t think I slept that night. The next day we flew with our 10 week old baby to Toronto and the day after that we got the heart wrenching, however much expected, confirmation that Tyce had well advanced retinoblastoma at Toronto SickKids Hospital. The doctors rated it a D on a scale from A-E.
Even if you know what’s coming, you’re never prepared for how it actually feels… However, the warmth and kindness in the way the doctors explained the diagnosis and treatment options helped to soften the blow of the devastating confirmation. The following day Tyce was scheduled for an MRI and enucleation.
The entire process moved very quickly which I was thankful for, however looking back I’m unsure if I was truly processing everything or if I was just living in survival mode. Taking Tyce down to the anesthetic room was THE hardest things I’ve had to do in my life. Handing him over to the team and walking away without him was utterly heartbreaking.
Meeting Tyce back in the recovery room was tough as well. I expected him to be completely asleep but he was moaning under his breath, and awake. His bandage was much larger than I expected, perhaps because he was so small. He attempted to breastfeed, however for the the next few days he needed antiemetics through his IV line to keep anything down. Once he began to keep his feeds the bandage was removed. We were discharged the next day and the only difficulty really was not getting angry with people’s stares. I didn’t blame them, my baby had a huge black eye, but I felt very protective and nervous going out, which lasted a few months.
That was almost 3 years ago… Tyce has been cancer free for nearly 3 years now and this makes my heart sing!
However, a few months back it was often a struggle to hear cliches like “everything happens for a reason” or “its all part of the plan”. Why was my tiny little angel chosen to walk such a difficult path? At times I feel so desperately sad for our boy, scared of what the future will hold for him, how he will cope, how life will be for him growing up. I am forced to remind myself that losing his eye saved his life and then I am able to find acceptance.
On numerous occasions I’ve heard retinoblastoma referred to as the “good” cancer to get. It has an incredibly good treatment plan with very high survival rates so I understand where this statement comes from but it’s kind of damaging too. It makes me feel that I shouldn’t be so deeply affected by my son’s diagnosis, which then leads to guilt about me trying to underplay the severity of Tyce’s diagnosis and treatment. I appreciate this is part and parcel of the emotions I’m dealing with but it’s been hard to make sense of it all at times.
No matter how good the outcome of an illness, if the road getting there is rocky then it’s ok to find it hard and I’m starting accepting that now. My anxiety gets the better of me at times. My head tells me everything will be okay as every test has pointed to positive outcomes, but at times my uneasy heart is full of fear. Tyce’s charisma, bravery and strength is the main reason I remain strong in hardships.
The trips for follow-up procedures in Toronto and Saskatoon include exams under anesthetic and prosthetic eye care. Tyce has been under anesthetic 15 times in total and has struggled with pre-operative anxiety and post-operative emergence delirium. Its never easy but he helps me persevere. I feel so incredibly blessed to have this tiny superhero call me mom!
Hope session by I Spy Imagery | Facebook