One year ago today, we brought this candle with us to hold in our hands and to help us keep our hearts open, let the light in and push the fear out as our Maya went in for surgery. This candle has shone brightly in our home ever since and has given all four of us a sense of comfort and peace.
It is amazing to think that it has already been one year since we received the news of Maya’s cancer. Some days it feels like it all happened so long ago and other days, like the past couple of weeks, it feels as if it were only yesterday. As the following timeline runs through our minds, all of the emotions we experienced come rushing back:
November 8th, 2010: We met a young and newly-practicing optometrist who saw the white spot the second she saw Maya and had the instinct to refer her as quickly as possible to an ophthalmologist in Sherbrooke. She told us it could either be an eye infection or a tumour. We were slightly freaked out but didn’t really believe it could be a tumour.
November 9th, 2010: We spent the day at the Hôtel-Dieu Hospital in Sherbrooke and Maya was examined by at least six doctors, who then scheduled an emergency appointment for Maya at Sainte-Justine Children’s Hospital in Montreal the next day. They told us the same thing: eye infection or tumour. At this point, Robbie and I no longer believed it was nothing, and the worry started setting in.
November 10th, 2010: We travelled to Montreal where Maya again underwent a battery of tests by four different doctors. Dr. S came back into the room with two other doctors to give us Maya’s diagnosis: unilateral retinoblastoma in her right eye. Translation? A cancerous tumour growing inside her retina. Treatment? Enucleation—the complete removal of her eye—with a possibility of chemo and/or radiation treatments afterwards. This is the moment our world came crashing down. Holding Maya in my arms, tears streamed down my face as I tried to stay strong for her and not let her feel any fear while at the same time my own heart was breaking.
After asking many questions and meeting with the oncologist (What? An oncologist? But my daughter isn’t sick!), it was time to break the news to our families.
As I made phone calls outside the hospital and cried profusely in front of many strangers, Robbie sat in the cafeteria with Maya, attempting to explain to her what was happening and what the doctors would have to do.
Our hearts literally broke that day.
November 11-14th, 2010: We spent a few days at my parents’ house where we felt safe and loved. Maya played her heart out and we cried our eyes out. On the 13th we went home to Richmond where Robbie’s family brought us more love and comfort. Sunday was spent preparing for the unknown and tearing ourselves away from our safe “bubble,” not knowing what the situation would be when we returned.
Our friends Adie & Efrem greeted us in their Montreal home with open arms and hearts and they made their home our new safe bubble where we could just be.
November 15th, 2010: Maya had her first M.R.I. to evaluate the size and location of the tumour as well as to determine whether it had spread outside the eye. On this day, we began to see our daughter’s strength and fighting spirit.
November 16th, 2010: Surgery day. Our hearts broke once again as we said goodbye, kissed her eye and watched as they rolled her away. Then the long wait began. There was a lot of pacing, nausea, talking, silence, etc. When Dr. S appeared with a smile on her face, relief washed over us. News that the surgery had gone well was all the news we needed at that point. After waking up, her smile and light-heartedness reappeared. Now that the surgery was over, it was in the past and her future was ahead of her.
November 17th, 2010: After fasting for several hours over two days, Maya was fasting again in preparation for her lumbar and bone marrow punctures. Dr. S also examined Ella’s eyes to make sure they were healthy. After Maya’s punctures were done, we escorted Maya to the cafeteria where she indulged in pizza and fries and played with Ella. Her smile did all of our aching hearts good. When we finished our meal, we headed home.
December 8th, 2010: Exactly one month to the day after this challenging journey began, Dr. S called us with two very important pieces of news: 1 - The pathology results had come back and doctors had determined that the cancer had not crossed the barrier of her eye: no chemo or radiation therapy would be necessary. 2 - The results of the genetic testing had also come back (two months early) and Maya seemed to have the non-genetic form of retinoblastoma. It was a very happy day in the Hinds household!
Even as I write this, I cannot believe just how much happened within a period of thirty days. We experienced a powerful and all-consuming range of emotions—sadness, fear, joy, helplessness, strength, trust, love... However, as Robbie and I have discussed at length, anger never once figured in that range of emotions. This whole experience has helped both of us see how powerful and good the opening of the heart and spirit truly is.
So where are we at—one year later? Maya has been monitored closely with M.R.I.s and eye exams every three months. Every test has come back perfect and there is no doubt in our minds that removing her eye was her cure.
We have been to the hospital a total of thirteen times and every visit has been a little easier. Maya has grown older and the routine has become familiar. During the last couple of visits, we have watched Maya begin to make the distinction between what the nurses and doctors do to her and the loving people that they are. She is now giving her nurse hugs when she sees her and she wrote her a beautiful note which she gave her on Wednesday:
(I love you. You take good care of me.)
Maya has learned a lot about herself, including that she can make things either easier or more difficult for herself. She has consciously realized that she has the power to see things positively or negatively, and she has chosen to live her experiences as positively as possible.
We can honestly say that life has not changed for Maya. The loss of eyesight in her right eye barely slowed her down. At first, going down stairs and games involving balance were more challenging for her. But with practice she has conquered these difficulties. Since then, she has continued to be a very active little girl—swimming, biking, playing soccer, running, jumping on a trampoline, fishing, boating, riding a scooter, skating, etc. She does it all and she does it with pure joy and happiness.
She no longer talks about losing her eye or asks us questions about it. She has accepted this loss and is proud to share her story with others and show them “her fake eye.” To anyone who looks at her and is unaware of what happened, it is nearly impossible to tell the difference between her real eye and her prosthesis. The ocularists, truly did a beautiful job making her prosthetic eye.
Ella has been an amazing sister for Maya and has accompanied her throughout this journey with grace, patience and love. We will never know just how this whole experience has affected her. She has had some difficult moments over the course of this past year and there was a period where we felt a distance between us. In September, however, she had an intense release of emotions for the first time, and since then she has been calm, happy and overflowing with love.
Maya and Ella have taught us so much about living in the present moment. They have awed us with their ability to open people’s hearts and fill them with love.
As for Robbie and myself, this has been a difficult year where we have undergone a lot of self-reflection and a reorganization of our priorities. This situation has confronted us in many ways and has given us the opportunity to grow. This fall was a turning point for us in the sense that we were finally able to get over the pure exhaustion we had been feeling since our journey began. Our appreciation for life, for ourselves, for each other and for those around us has grown exponentially. Our hearts are also overflowing with love, happiness and gratitude.
One year later, our message remains the same. At the beginning of this experience, we learned to open our hearts to love and light and to push out fear and anger. As we shared our story, we were surrounded by love and compassion from everyone we knew and from many people we didn’t know. We experienced firsthand just how powerful love and light can be and how much good can be done when people unite in sharing that love and light with one another.
One year ago, I asked that you light a candle or some sort of special light in Maya’s honour. Today I ask that you do the same—but this time, in your own honour and in that of the love and light you have inside yourself. We are all lights in this world and in uniting them, there are no limits to the good we can create for ourselves and for those around us.
We thank you once again for opening your hearts to our story this past year. It has been a privilege sharing it with you. Your positive energy has helped us through this very difficult time in our lives and has reminded us how much light is actually out there in a world that often seems so dark. We will be eternally grateful for this shared experience where we have truly stood heart to heart.
