My Reflections

By Ericka Dixon-Williams
September 26, 2001

Imagine you’ve got a rare and devastating form of cancer…Imagine you are 3 months old…IMAGINE IT’S YOUR BABY.

Our little angel Avery was born with Retinoblastoma (RB). This is a rare childhood eye cancer. In Avery’s case, she has bilateral RB: affecting both of her eyes. The left eye was the worst of her eyes, with it having the largest tumors. We discovered this when she was three months old. We saw the “white pupil” in her left eye on two occasions and advised our family physician, which immediately sent us to an ophthalmologist. Avery was diagnosed at The Hospital for Sick Children in Toronto on February 25, 1998.

She was immediately taken under the care of the Retinoblastoma Team of Dr. Brenda Galle, Dr, Helen Chan, Dr. Elise Heon and Dr. Andy Budning. They explained to us very compassionately and openly the treatment plan for Avery and all the possible variables to this plan depending on the results of the treatments.

• She would get 9 cycles of chemotherapy along with focal therapy (laser- heat and cryo- freezing) for three days, every three weeks for 7months.
• The focal therapy would be administered under anesthetic (EUA) the first day of each treatment, followed by 2 consecutive days of chemotherapy.

It was clearly explained to us that at any time during her treatment span, if the team saw where there would be a risk of the tumors in either eye escaping from the eye they would enucleate (remove) that eye expeditiously, to prevent the cancer from spreading to her brain. WE UNDERSTOOD, and prayed diligently, passionately and frequently that we would never be faced with that situation ENUCLEATION.

Avery’s treatment plan went excellent throughout the 9 cycles of chemotherapy and focal therapy, which ended August 1998. She has both eyes. Our prayers have been answered- no enucleation. Avery continues to be monitored very closely with regular EUAs and treatment of focal therapy when required. All’s going very well, with minor bumps here and there of sporadic active tumors showing up now and again in her left eye. The right eye has been tumor free for over a year.

February 14, 2001, EUA, the old tumor in Avery’s left eye became quite active, causing great concerns from the RB team. Treatment continues with only focal therapy. As long as the tumors can be controlled by focal therapy, chemotherapy will not be re-introduced. We are reminded of the possibility of enucleation of Avery’s left eye. We intensify what we do best: PRAY, that enucleation will never become a reality.

May 30,2001, another EUA, our greatest fear and worst nightmare, since Avery’s diagnosis with RB, is now facing us.  At Avery’s previous EUA on May 2, 2001, everything looked great. The treatment was doing what it was suppose to do; shrink the active tumors. Now on May 30, 2001, we’re told that “the cancer has taken on a life of its own”, and there is no other option but enucleation. “OH DEAR GOD, THIS CANNOT BE TRUE”, was my first thoughts. Then I felt uncontrollable weakness in my stomach and the tears cannot stop. My heart is literally hurting, I can hardly breathe. I wrap my hands around my stomach rocking back and forth to try and find a little comfort from my feelings of pain and helplessness. I have absolutely no questions to ask the doctor, as I have already asked them so many times in the past.

As I wept, thoughts of imagining Avery with one eye that will twinkle and shine at me and the other eye that will have no sparkle ravaged my soul. How do I tell Avery…how do I tell her 6 year old sister Savoy, who has endured so much stress and fear of losing her baby sister in her short little life…where will I get the strength to endure this ordeal. I can’t find my smile…I have only tears and pain.

June 11, 2001, today is enucleation day. Today there are no tears…today the pain has ceased significantly… today there is strength. Today I have had time to pray and reach a place of acceptance that this enucleation is minor in the larger scheme of things. I am at a place where I find great comfort in knowing that today I am not fighting for Avery’s life.

She is and will be my little angel, with one eye that will shine and sparkle and another that will remind me that she IS ALIVE. I’ve told her sister and she “doesn’t like it one bit, but it’s okay to take Avery’s eye if it will make her not die”.  I told Avery that her left eye has a really big bad boo-boo, and we will remove that eye and give her a new one the next time we go to “her big hospital”. I know that she doesn’t understand, but I had to tell her so that when she awakes in the hospital room and not at home, it would be easier to remind her why she is in the hospital.

The surgery took approximately 3 hours and went perfectly advised Dr. Elise Heon. We visit Avery in the recovery room as we have done so many, many times before after her EUAs. She rests peacefully with her eyes closed. I kissed her cheek and whispered, “mommy here”. She whispered, “Hi mommy”. Her sister Savoy holds her hand and say, “I love you Avery”. Avery utters back, “I love you”. Daddy kisses her forehead and says, “hi peanut”. She whispers back, “hi Daddy”. She looks wonderful, even with the large bandage covering her eye. She emits her strength to all of us, and we in turn are able to stay strong and positive.

I stayed with Avery in the hospital during her entire stay, 4 days. A few hours after the surgery in her room, she’s alert and talking, though she keeps her right eye closed. She wants chicken nuggets. She’s in no pain or discomfort; if she was, she would tell me. The next day she opened her right eye and touched the patch on her left eye and asked me “what’s this”? I reminded her that she now has her new eye. She says, “Oh, okay”. Day 3, Wednesday June 13th, she’s up and about visiting the nursing station, visiting other patients and interrogating everyone she meets…what’s your name? What are you doing? etc. Looking at her, one could say, “kids are resilient”, and I know they are, but Avery has been blessed with an enormous amount of strength that I am unable to express in words.

All I can say is “thank you God”, because without her strength our family would not be able to hold it all together.

Thursday, the bandage is removed. Her eye is quite swollen, but not any more swollen than after an intense Cryo treatment. We went  home that afternoon. Avery’s running all over the house and causing grief to her sister. Avery even escaped outside and start chasing our neighbor’s child. Needless to say, I almost passed out when I saw her in action. I quickly captured her and brought her back inside where I FELT most comfortable for her to be. Over the next few days, the swelling went down and we could see her temporary “new eye”. She looked wonderful. I even forgot about my earlier worries about her new eye not shining back at me. She looked perfectly beautiful and normal with her TWO eyes.

With the enucleation, Avery’s check-ups took a wonderful, welcomed turn. Instead of her check-ups being EUAs, with all the eating restrictions before hand and spending most of the day at the hospital, she’ll now be checked at the eye clinic. She can eat anything at anytime and we’ll only spend 1 to 1 ½ hours at the hospital. Avery has been fitted with her customized eye, which matches her right eye perfectly. She calls her new eye “the FAKE EYE”. No one can tell the difference or even notices it until she goes up to them and proudly say, “wanna see my fake eye?” Then the person will look at me with a query expression on their face and I would briefly explain. Their response is always “OH MY GOSH, YOU WOULD NEVER KNOW”.

Everything is back to normal. Avery is a terror to her sister Savoy, a  constant ball of energy that exhausts her parents and a shining star with two sparkling beautiful eyes.