One Year Later...

                                 

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 8^th, 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 9^th, 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 10^th, 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 11-14^th, 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 13^th 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 15^th, 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 16^th, 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 17^th, 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 8^th, 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.

             

Another Chapter Closes...

Another Chapter Closes...

Another trip to Montréal under our belts and a great one to bring an end to Maya’s first year after being diagnosed with retinoblastoma.

Today we went to another retinoblastoma clinic where Maya was one of many children who were placed under general anaesthesia for an in-depth eye exam. Her more-than-cooperative and helpful team of doctors also organized for her lumbar and bone marrow punctures to be done at the same time (in order to avoid another trip for us, as well as another sedation for Maya). It was a great day where everything ran smoothly and more quickly than usual. We arrived at 9:50 a.m. and left the hospital at 3:00 p.m. It seems like a long time to be there, but considering that between those times Maya was weighed, measured, had her vitals checked, given a pick-pick for her blood work (which was the best she cooperated ever and has a beautiful pink finger puppet to show it), had her lungs, ears and heart checked, had cream placed on her back, was put to sleep, had the examination done and waited for her to wake up, it was quick! The short 90 minutes we waited until it was her turn to have the exam done was spent watching Caillou on the portable DVD player we had borrowed from a friend (thank you, thank you, thank you Gen!). The bottom-line was that my daughter was happy and content pretty much the entire time we were there, despite the fact that she had not eaten since supper-time last night.

My mother accompanied me on this trip and gave me the necessary support and company I needed on such an emotionally-charged day. Maya was also thrilled to have her “Graggy” there to keep her company.

Once again, the most challenging and inspiring part of being at the retinoblastoma clinic is seeing the other children and parents who are living with retinoblastoma. Since retinoblastoma is such a rare cancer that rarely presents itself the same way twice, everybody there has very different stories to share. Fortunately today, every time Dr. S kept coming out of the examination room to talk to parents, the news was always good for all the families. Every time I listened to her speak to parents, I was reminded of just how gentle, positive and straight to the point this woman is when she gives parents news. It reminded me of just how comforting she was when we received the difficult news of Maya’s tumour.

Today we saw many families: one was a little boy we saw six months ago at the last retinoblastoma clinic. The last time we saw him, he was starting chemotherapy for a tumour in his left eye. Today, his chemo is done and his tumour is now inactive.

We saw another couple with two children who both have retinoblastoma. Their oldest has done chemo in the past and has been in remission for three years and their youngest just completed his third cycle of chemo out of six. I couldn’t help but look at them and admire them for their strength to go through all of this with both their children. It once again put things into perspective for me about just how we were blessed at so many different levels with Maya and Ella.

The most striking thing about seeing all the families every time we go to the hospital is not their pain and suffering, but the love that exists between the parents and the children. No matter how difficult it can get, these parents love their kids with all of their hearts and that feeling is clearly returned by the kids by the cuddles and attention they need during their toughest times.

I have learned a lot this year about just how strong the bond between parent and child can be. It is times like these that I rejoice in our choice for me to be a stay-at-home mom. Being with my kids, through their good times and their not-so-good times is something I could not replace with anything else.

What Maya's Retinoblastoma Looked Like

I've been spending time lately looking through our family pictures in an attempt to get started on various Christmas projects (anyone who knows me knows how I like to get started early!). Going through the albums this year has been a particularly emotional after everything our Maya has been through. Up until now, I had only found 1 picture, out of the hundreds we have, where we could see her tumor. Yesterday, I found two more that show us that tiny, little white reflection that prompted Robbie and I to take Maya to the optometrist. I am sharing these three pictures with you today, in an effort to help people see what retinoblastoma can look like. Although all cases are different, seeing an example may help parents discover the signs early on so that treatment can begin as early on in the disease as possible.

In this first picture, Maya has red-eye in only the left eye. Her right eye has none. The reason for this is when a picture is taken, the flash goes into the eye, reflects off the back of it and back out. The light coming back is red. However, when there is a tumor, the light reflects off the tumor and gives off a white light. This is why many retinoblastoma cases are first noticed through pictures taken of children as opposed to in person.




In this second picture, you can see the tiny, white reflection that we first noticed back in October of 2010.

This third picture show that same white reflection from a closer angle.

I hope that these pictures can help people understand what it is that we saw and can help people be aware of the signs. Seeing as this is a very quickly growing cancer, time is of the essence. Although this type of cancer is very rare, it is important that people be made aware of its existence.

My Cousin's Ride to Conquer Cancer

Another free slideshow by Smilebox

Music Fest Speech

Here is the speech I shared with those present during Maya's wish presentation:

When Maya was born, we were in awe of her beautiful spirit and amazing ability to give love to those around her. Robbie and I both felt that she had come to this earth to spread light and love in a world often filled with darkness. Over the past four years, we have seen her open people’s hearts and brighten their days, whether she knew them or not. Those who know Maya know how much she loves to smile, how she expresses her love for others as she feels it and just how much she hates to say good-bye. She gives many impromptu hugs and loves to initiate games with those around her. Some of her favourite games include tag, saving worms on a rainy day, looking for crabs at the beach and taking care of her stuffed bear, Kayla. Wise beyond her years, her understanding of the world has both surprised and inspired us.

This past November, we took her to the optometrist because of a white spot that sometimes appeared in her right eye. After being referred to Hôtel-Dieu Hospital in Sherbrooke and then Sainte-Justine Hospital in Montreal, we were told that she had retinoblastoma, a cancerous tumour in her retina. Due to the location of the tumor and the high risk for spreading, she had surgery to have her eye removed 6 days later. Maya showed incredible strength during those first two weeks and the months that followed. We saw her fighting spirit and although that made it difficult for us as parents at times, it made us proud to see that she never backed down from a fight. Fortunately for us, removing her eye was her cure. There was never any need for chemotherapy.

After we received the diagnosis, Robbie and I made a choice. Although the sadness and grief we were feeling in that moment were excruciating, we chose to live this journey with acceptance and fill our hearts with love and light as opposed to anger and fear. We did not search the why of things but simply lived each day one moment at a time.

When this all started, there was an energy that built up inside of me that compelled me to share our story with those around us. I wrote my thoughts and feelings down after every experience, appointment and emotion. Thanks to Facebook, where I posted my writings, something amazing happened. People read what I had to say and responded in ways we never imagined. They, as well as many others we didn’t even know, shared their stories, talked about how our story impacted their lives and sent us messages of strength and love. They prayed for us, meditated and lit candles representing Maya’s light in the world. In those most difficult moments when we felt weak, we leaned on the love that people were sending our way to get us through.

Maya is doing really well. She had an M.R.I. this past Monday and everything was perfect. She is monitored every three months and in between appointments all is forgotten! She has not let any of this slow her down. Spring has brought back her love of biking and the thought of summer has her anxiously awaiting for our yearly trip to the beach, swimming and going for boat rides on the river. She’s also hoping to catch a really big fish!

Never in a million years would Robbie and I have chosen for our daughter to go through this experience, but she did. As difficult as it was, a lot of good came out of it. We saw what incredible families we come from. Their love and support during this time brought us all even closer together. So much quality time was spent with them and they helped us process, live and get through every step. Our friends and community rallied to our side, providing us with places to stay in Montreal, homemade meals and, most importantly, they were just there for us. Our minister and the people of our church were also with us every step of the way.

We met so many new and amazing people who took care of Maya as if she were the only child in the world: the young optometrist who followed her gut instinct and insisted that Maya be seen by an ophthalmologist the following day, the doctors and nursing staff who lovingly showed us that our medical system does work once you’re in it, and the ocularists who made her new eye with so much care and dedication to their craft. We saw and met amazing children in the oncology department whose bald heads and smiles told the story of how they are able to live their lives in happiness while fighting cancer.

We saw firsthand the importance of volunteers who make it possible for sick kids to experience many special moments during their difficult times, from a little finger puppet to put on a pricked finger, to Leucan who organizes fun activities for the families of cancer kids to participate in — and now this weekend. When Chrissie approached us about the possibility of sponsoring Maya’s wish, we were, to say the least, surprised and very much excited. We never would have expected our daughter to be given such a wonderful gift. Being a part of this weekend has allowed us to see, yet again, how many wonderful people have volunteered their time to help make our daughter’s wish come true. Peter and Chrissie, thank you. You are truly an inspiration and we are proud to call you family. Marcia, Garth, Jackson, Alexandria, Kimberly, Patrick and William thank you for sharing this incredible weekend with us. Thank you to everyone for being here today and supporting this amazing cause. Your generosity and your presence here have helped brighten the lives of two amazing kids.

Throughout our whole experience from the diagnosis to having her prosthetic eye made, Maya taught us something very important. She showed us how to live in the present moment. She taught us how to be in the now, to put the past behind us and not worry about the future. It was in the little things that she taught us this lesson: the quick return of her smile after a difficult procedure, being pleased as punch after her surgery because she could eat all the popsicles she wanted, and wanting to just play. She often put us in check, asking us not to talk about things that were over with. This is why our focus here today was not to talk about the details of her medical journey but instead describe the good that came out of our journey and the hundreds of hearts that Maya opened by just being her. Maya and Ella, we love you more than words can express.  Maya, we are so proud of who you are and how beautifully you live life. May your light continue to shine brightly through all you do.

Wish Weekend

Music Fest was last weekend and boy did we ever have a fantastic time. Great music, excellent food and most importantly, lots of friends and family to share this amazing time with.

When we arrived on Friday evening, we quickly set up our tent and unpacked. Maya then insisted on going to meet the “people who are making my wish come true.” So Robbie took her to go meet some of the volunteers, including Chrissie and Peter. She obviously understood the importance of what all these people were doing for her because she took to them right away. It wasn’t long and she was giving hugs to everyone and initiating games of tag with Peter. That’s pretty much how the rest of the weekend went. Maya had a smile plastered on her face the entire time, visiting the petting zoo, jumping on the inflatables and showing her moves on the dance floor as various bands shared their incredible talents. Ella also kept herself very busy going from one activity to another with different aunts, uncles and cousins. We hardly saw our kids all weekend!

Robbie and I were struck by just how many volunteers work before, during and after Music Fest to make the event run seamlessly. We did our best to thank as many of them personally as we could, but thanking them all was an impossible task. Some volunteers we spoke to have been volunteering for 10-15 years and speak about Music Fest and the Children’s Wish Foundation with so much enthusiasm, it blew us away.

Maya was given a great honor on Saturday: there was a man there who had been growing his moustache for about 5 years. He had braided it and it hung down the sides of his mouth. A few months ago, he began collecting money for the Children’s Wish Foundation to cut it off and managed to collect about 500$. After he met Maya, he asked her if she would be willing to cut one of them off for him. She took her time and it took 4 cuts to cut it completely off. Maya was thrilled!

Sunday was more of an emotional day as we prepared for the Wish presentation. Maya was given many heart-warming gifts of love: a comfy blanket with her name on it, a Children’s Wish Foundation lion stuffed animal, a beautiful lantern-type night light with the word Wish cut out to let the light shine through and a gorgeous painting of a candle shining brightly painted by Chrissie and Peter’s daughter, Amber.

During the presentation, we were able to hear Jackson’s story, the other wish child being sponsored and meet their family. His brothers and sisters spoke with lots of love and emotion and we saw just how important their little brother is to them. Marcia, his mom, gave a beautiful speech that shared the same message of love and light as our speech. They are an amazing family and we wish them lots of love and happiness.

More donations were presented and we were overwhelmed once again by people’s generosity. There were even two young girls who put their own money aside for the cause, saving over 150$!

The presentation ended with a slideshow prepared lovingly by one of the volunteers that showcased Maya and Jackson and allowed the crowd to get to know them and their families a little bit better. It was a great way to end the presentation.

It was a great weekend, one that we will not soon forget. Maya’s smile showed everyone what a wonderful time she had. She said something as the end of the weekend that summed it up well: “I felt very special this weekend!” What more can parents ask for?

The Warm and Fuzzies!

This week sent us back to Montreal for another M.R.I. exam with Maya. The days and hours leading up to this exam were the calmest we’ve ever experienced. When we first told Maya this test was coming, she was nervous and immediately asked if there was going to be a “pic” (needle). We told her that there would be and she was upset. However, it didn’t last and she enjoyed her time in the days leading up to the M.R.I. playing and enjoying herself.

We drove into Montreal on Sunday and spent the day at our friends’, Adrienne and Efrem’s house, where the girls were able to play to their hearts’ content.  On Monday morning, we kissed Ella good-bye (thank you to Adrienne for taking care of her so she was away from us for a few hours as opposed to 3 days)) and headed to Sainte-Justine’s hospital with Maya was calm as can be. She was excited to get there and went straight to the oncology waiting room where she got busy preparing pretend meals and playing with Barbies. Her oncology nurse called her in, put the numbing cream on her hands and told us to come back and see her forty minutes later. Maya took advantage of this time to paint a birdhouse for Ella. Then came the pic. She resisted quite a bit but calmed right back down as soon as it was over.

We then ventured over to the M.R.I. department where we found out her M.R.I. was delayed for an hour. This was actually a good thing as it gave us plenty of time to get her gown on, which for the first time she did not fight, and we spent the rest of the wait just talking the three of us. We made jokes, giggled and gave her lots of hugs. When it was finally her turn she sat on the table, without hesitation, and told the technicians she preferred to remain seated until she was asleep. Again, for the first time, she did not fight sedation and at some point said, “Mommy, I’m starting to feel dizzy. I think I’ll lie down now.” She went to sleep and only awoke an hour after the end of the test. Contrary to the last M.R.I., she woke up with a huge smile.

The rest of the day was spent at Adie’s playing lots more and having her burn off a ridiculous amount of energy by triking around the block a few times. Although she needed to be watched closely as she had no impulse control, she was much more stable than the last time. No face plants this time!

The following morning, Maya and I went back to the hospital to get the results. Maya immediately got herself another birdhouse to paint and spent her time drinking hot chocolate and painting. The doctor soon called us in and told us that the scans came back clean. With each appointment we have little doubt that the results will be positive but hearing it is still always a relief.

I’d like to share a special moment we were privileged to witness while we waited to see the doctor: A nurse came over the loudspeaker and announced the following: “Congratulations to Florence who just completed her final chemo treatment!” Everyone in the waiting room started cheering and clapping. The family walked into the waiting room and everyone jumped up to go hug and congratulate them. I sat in my chair watching this with tears streaming down my face (as they are right now writing about this moment!). It was such a beautiful moment and the family was absolutely glowing. The dad had tears streaming down his face and the mom was grinning from ear-to-ear. What amazed me most was seeing the other parents who automatically put their pain and struggles aside to genuinely rejoice for this family’s good news. It was yet another moment that I will never, ever forget.

Now we are back home and busy preparing for Music Fest this coming weekend. The cooking and packing are almost done and I’m practicing my speech. We look forward to this amazing weekend of music, family and friends as Maya is presented her Wish!

Entering into the "Retinoblastoma Club"

We ventured back to Montreal with Maya yesterday for an appointment for an in-depth eye exam, lumbar and bone marrow punctures under general anaesthesia. The in-depth eye exam revealed that everything is perfect. Her left eye remains perfectly healthy. As for the results of the punctures, we now have to wait a few days for the results although both our ophthalmologist, Dr. S! and oncologist, Dr. C, feel that the results will be perfect as well.

For the first time since the beginning of this ordeal, Robbie and I really weren’t nervous going to the appointment. Although it was the first time we went in for this type of exam since Maya’s surgery, we felt good about what the results would be. So for once, the build-up to yesterday was not as emotional and tiring as it once was. It actually ended up being quite a special day for us:

The in-depth eye exams are all scheduled at the same time. Therefore, they have what they call a Retinoblastoma Clinic where they have 4 patients come in at the same time to have the same exam done. It was our first opportunity to meet other families who have experienced retinoblastoma and boy was it ever an eye-opener.

We arrived for a 10:00 a.m. appointment where we first met the nurse who checked Maya’s vitals, her height and her weight. We were sent back to the waiting room for a while. I really need to take a picture of the room at some point; it is a beautiful playroom filled with inspiring kids all fighting their own battle with cancer. Maya loves playing with the toys and always chooses a craft to do while she waits. The older kids often sit and talk with the younger kids and a girl even gave Maya a little bunny she had made with a terry-cloth towel.

After playing for a bit, we were called in to see Dr. C, the oncologist, for more routine questions. Then another visit with a nurse for some blood work (a finger prick this time, which Maya responded really well to) who put a band-aid on Maya’s finger when she was done and a homemade finger puppet over that to keep Maya entertained. Again an example of the generosity of people who volunteer their time to sew little foam finger puppets so little children can be quickly comforted after a finger prick. Then back to the waiting room for a good hour.

During the next little bit, Maya became interested by some tools a little girl was playing with. The parents were so welcoming to Maya and invited her to join them for some pretend-building fun. We noticed that the little girl also had glasses and we asked if they were also here for the retinoblastoma clinic. They were and we quickly got their story.

Their daughter, who is 3 ½ years old (only a few months younger than Maya) was diagnosed with retinoblastoma when she was 5 months old. Her parents had gone to see their pediatrician because they were concerned she had a lazy eye. The pediatrician told them not to worry and that it would most likely correct itself before the age of one. The mom insisted on wanting to be referred to an ophthalmologist immediately. When they called the ophthalmologist’s office at Sainte-Justine, they were told it would probably take up to a year to get an appointment. However, Sainte-Justine phoned them the next day with an appointment (there had been a last-minute cancellation). They went and that is when they received the unbelievable news that their daughter had tumours in both her eyes. She received chemo and radiation over the course of the next several months as the tumours were extremely aggressive. At the age of 18 months, one the tumours was too close to the optic nerve and they had to remove the eye. She continues to be treated for tumours in her right eye. They were there yesterday to see where the tumours are located at this point in time and what the next course of treatment will be.

Looking at their daughter, you wouldn’t know that this is her life so far. She is a happy, smiling and loved little girl who has become accustomed to the hospital visits and all the tests. She was laughing with her parents and completing puzzles in record time. We could see how this has impacted her parents but like us, have chosen to create a cocoon of love and light around their daughter to keep her away from fear as much as possible.

A little while later, we were called to the room where they do the exams and we found ourselves in a room with 4 beds: Maya, the other little girl and two little boys, one 2 years old and the other about 10 months old. The parents shared their stories and the kids played in their beds while we each waited for our turns. We were the only ones who had never participated in this clinic before and we could see the strong bond that has been created between the other parents who have spent a lot of time in that room together in the past several months. There was a real camaraderie there and we were welcomed into that “club”.

Since Maya had punctures to have done at the same time as her eye exam, she was the first to go (at 1:15 p.m.). She was in the exam room for about 45 minutes and Dr. S! came right out after to tell us the good news. We were of course elated and relieved. It didn’t take Maya long to wake up and when she did, she was ready for apple juice and zucchini bread. We took her out to the hall (away from the fasting kids) and she inhaled two pieces of zucchini bread and two boxes of juice. She was STARVING!

Unfortunately, we were given the go-ahead to leave before the other little girl came out from her exam. We left with heavy hearts not knowing if the news was good or bad. We’ve been thinking about that beautiful, inspiring family all day. Hopefully when we go back in 6 months (yes, 6 months!) for another retinoblastoma clinic, they will be there with good news.

We walked out of the hospital ready to come home, physically exhausted but for once, not emotionally exhausted. Maya will have another M.R.I. in May and then we will have a long 6 month break. Maya celebrated that fact in the car with the most chocolatey doughnut imaginable. She had chocolate all over her face, but not enough to hide her huge smile of pleasure!

Meeting these families and hearing their retinoblastoma stories made us realize just how unique Maya’s case really was. She was the only one there who had not been diagnosed as a baby and she was also the only one who had not done any chemo. It made us realize how truly blessed we are that out of all the possible scenarios, ours was the best. I admire the strength of these families and especially the strength of all our kids. They are exceptional little beings who have so much to teach us about living life to the max.

Maya's Wish

Today we received a very special phone call from the Wish Fairy at the Children’s Wish Foundation of Canada: Maya will be getting a wish. How did this happen? Robbie’s cousin, Peter and his wife Chrissie organize a weekend every year called Music Fest that showcases musicians from all over the Townships. They donate the proceeds of this weekend to the Children’s Wish Foundation of Canada and sponsor the wish of a local child. Chrissie called us back in January to tell us that, if we were willing, they would like to sponsor Maya’s wish. Our initial reaction was one of shock as we had always believed that wishes were granted to terminally ill children. Chrissie explained that the Wish Foundation has one eligibility requirement: to have been diagnosed with a life-threatening illness.

Once we got past our initial shock, we started the process immediately. A quick phone call to the Wish Foundation opened Maya’s file and the Wish Fairy sent us the paperwork. We had our doctor sign the papers and everything was sent back to the foundation. Today, we got the confirmation!

What is her wish? It will most likely be a trip to Disneyworld. However, since Maya and Ella are still so young, we plan on waiting the full allotted 5 years before completing her wish, giving her both the time to make sure that really is what she wants to do and to be old enough to enjoy it fully and remember her trip too!

So Maya will be one of the Wish children at Music Fest this coming June. It will be an extra special year as the other child that is being sponsored is the son of another one of Robbie’s cousins. It will surely be a bittersweet family affair this year.

We are truly touched that Peter and Chrissie thought of us and got the ball rolling. Their generosity and kindness are inspiring and we hope that you will help them to make this event a huge success once again this year. Whether you actually attend Music Fest or donate items for the bake sale or silent auction, any help will be greatly appreciated. You can visit their website at http://www.themusicfest.org/ for more information about the weekend.

We hope to see you there!

The Making of Maya's New Eye

Yesterday was the closing of a very difficult chapter in our lives and Maya lived it in the most awe-inspiring way. I cannot even begin to imagine what it must be like to lose an eye, let alone have someone I barely know poke and prod me where my eye used to be. We arrived at the ocularist’s office at 9:00 a.m. and the process began immediately. They first removed the conformer that was in her eye to then insert the prosthesis, which at this point was much like the conformer: transparent. It looked thicker than the conformer and Maya felt the difference in fit right away. The first couple of times that the prosthesis was removed and put back in, Maya fought and we had to restrain her. She hated being restrained and said it hurt her arms a lot (Robbie had to hold her arms above her head so her head wouldn’t be able to move). Once she realized that Mr. D would be doing this often, she decided she preferred to cooperate and make it quick. I offered to hug her while he did his work and that became the routine. As I hugged her every time, I felt her begin to relax and give in to the process. At the end of the morning, she was a pro and was completely relaxed and calm. It was a wonderful feeling to share with her.

The ocularist fitted the prosthesis by first drawing a cross on the front of the prosthesis, with the center of the cross being the pupil and the arms, the iris. He spent a lot of time adding wax to the prosthesis to create a better fit that would prevent the prosthesis from moving around in her eye. The goal was for the prosthesis to sit in her eye in such a way that her iris and pupil would not move off-center. He also showed us the implant that was put in Maya’s eye socket following her surgery (not the actual one in her eye, but a model). It’s a piece of plastic that sort of looks like a rounded cube with tiny holes. The muscles of the eye are attached to the holes which is what allows the implant to move. Once you put in the prosthesis, the implant moves the prosthesis similarly to an eye (just a smaller range of motion). Fascinating is all I can say.

Once he was satisfied with the cross, he attached a tiny stem on the “pupil” of the eye to make sure of the placement of the pupil and to once again verify the movement. Once this was done, they attached the iris that Joëlle had started back in January and “cooked” it in an oven for an hour and a half. During that time, we enjoyed a picnic lunch, played some games and just hung out.

Around 12:30 p.m., the eye was ready to be painted and the next part began: the art. Joëlle spent two hours colouring and painting the eye with Maya’s help. Can you believe that part of the coloring process is done with regular prismacolor pencil crayons? Amazing! This part was long for Maya as she often had to stop what she was doing to look at Joëlle who was working so hard to create an eye that was almost exactly the same as her other eye. A very difficult task! Maya was sometimes very cooperative and sometimes less, but the end result was perfect. Maya spent a lot of that time playing with her bear, Kayla, who also had cancer in her eye. Maya removed her eye and pretended to make a new one. As it has been since the beginning, play was her way of getting through an exhausting day. After two hours of patiently sitting for Joëlle, Maya got to paint the first coat of varnish on her eye. She was so proud and can now say that she helped to paint her own eye!

We were then sent back to the waiting room while the eye had its final trip to the oven. Another hour and half of waiting was spent playing some more. Maya was deep into her imaginative play. It was almost as if Robbie and I weren’t even there. Occasionally she would leave to go see Mr. D and they would have little conversations together. At some point we heard her ask him, “Can I give you a hug?” and he of course said yes. Then we heard her say, “I love you Mr. D.” He sounded surprised but thrilled and we think he gave her another big hug. That’s our daughter, always spreading the love when she genuinely feels it.

Finally, the eye was ready. At this point, Maya was very excited about her new eye but also very tired. Mr. D put the prosthesis in and Maya was ecstatic about the result. She was less ecstatic when Mr. D said he had to take it out to shave a little off the front to create a better fit. We had to restrain her once again so he could take it out. He shaved a little off the front, did a quick polish and we had to restrain her to get it back in. At this point, he was satisfied with the fit and so we thought we were home-free. We were wrong. He had to remove it once last time so that it could be polished one final time, a process that takes 20-30 minutes. Maya was not impressed! We were all eager to go home. Once the eye was ready, she still needed to be restrained to put it back in. Then it was all done and we spent some time just admiring it. Although their day was over, all of the people who work there had their coats on and stood there waiting. No one wanted to leave without seeing the final product. There was a lot of love and pride in that room and it filled our hearts. Maya was proud of herself and pleased to receive some multi-colored highlighters from Mr. D as a reward for her hard work.

We left there at 5:15 p.m., stopped at Scores for supper and then headed home. We pulled into our driveway at about 8:45 p.m. and boy, were we happy to be home. Maya was excited because her Graggy and Poppy and our friend Thérèse were there to greet us. She was proud to show them her new eye and is now very excited about playing tricks on people: “Which one is my good eye???”

As I write this note, my emotions are pouring out in puddles and puddles of tears. I feel like we have been climbing this mountain for the past three months and we have finally reached the top. I’ve been reading email after email from our friends and family, messages of love and celebration. These messages have touched my heart in ways I cannot put into words. I finally feel like I can put this into the past and begin to move forward. Our next appointment isn’t for another two months and so we have a good break ahead of us with nothing lingering over our heads. I’m overflowing with emotions right now and feel like the floodgates have finally opened. It’s intense and I’m just trying to ride the wave the best that I can.

Sending you lots of love and light.

We're Back!

We are back home in Richmond and boy are we glad! Before going into any details, here are the results: M.R.I. results are perfect. There is still swelling where her right eye used to be, but that’s normal. Apart from that, both orbits show no signs of any cancer. Her blood work also came back perfect. We are incredibly relieved and thrilled!

Ella rarely gets mentioned in my notes, but she stayed at my parents’ house and had a blast. She loves the one-on-one time with her Graggy and Poppy; she has long baths, they play outside and she doesn’t have to share toys. Basically it’s heaven for a couple of days! She and Maya are always thrilled to be back together, however, and give one another huge hugs.

So now on to details: Our first appointment yesterday morning was in physio. Maya was rather preoccupied by a toy kitchen with play food, her favourite game. The physiotherapist, Anny, was able to get her to do a few things such as climb stairs, jump through hula-hoops, walk on a line, etc. However, she refused to do any of the fine motor activities such as drawing and cutting. No biggie. We have another appointment at the end of March where she will continue to evaluate her. She is very pleased so far with what she has seen and has given us some exercises to do with Maya to work on her balance.

Following that appointment, we went up to Oncology to meet our nurse. I still find it incredibly difficult to walk into Oncology and I still have that feeling of “What am I doing here?” We were called immediately and went straight to see our nurse who informed us that the M.R.I. department was ready for Maya. Maya was very afraid of the needle as she waited for her to get ready but was quickly distracted by the nurse next to us who was blowing bubbles to entertain the little girl she was working on. Maya blew bubbles while she waited. Once her nurse went to start prepping her arm, Maya became very uncooperative so she had to ask another nurse to come and help. Very difficult to watch her struggle like that, knowing that she’s scared. In the end she did great and her nurse put the IV in so fast that Maya was quickly back to blowing bubbles. We were sent directly to the M.R.I. department.

Once at the M.R.I. department, we started to see a trend in our daughter’s strength and unwillingness to let go without a fight. She refused to put the gown on and I had to physically pry it onto her. Then once we got into the M.R.I. room, she fought the sedation to the max. It took a good five minutes to put her to sleep and ready to go. Although it took her longer to go to sleep this time, they gave her a smaller dose of medicine. Last time, she slept for a good two hours following her M.R.I. but this time she woke up immediately after as she was being transferred from the machine to a bed. She woke up disoriented, upset and afraid (due to her inability to move her body as she normally would). I had to carry her back to Oncology because we were afraid she would bang her head on the bars of the bed. Needless to say I got my workout for the day!

When we got back to Oncology, I sat and rocked with Maya for a while. Our nurse gave us permission to leave and Maya then went into focus-mode. Her goal: go to the Oncology waiting room and do a craft. Although she couldn’t walk and was talking in a very slurred manner, she was dead-set on going to do a craft. We had to force her into her coat and she cried the whole walk to the car, the whole car ride to my friend Adrienne’s house and finally stopped when she saw toys to play with.

We spent the next several hours glued to her as she played, making sure she did not fall. We ordered good old Double Pizza for supper, watched Curious George and “Something From Nothing” (cartoon based on the amazing picture book) and had teaparties. We went to bed at 7:00 and woke up at 6:30 this morning. When Maya woke up, she was her old self again. Maya really wanted to eat at the hospital’s “restaurant”, so we left early and went for breakfast at the hospital. She was excited to eat eggs and sausages along with a hot chocolate, her main request for this trip. She enjoyed it thoroughly!

After breakfast, we took a detour to Ophthalmology where we stopped in to give a “kiss” (Hershey Kiss) to Paule, the woman who works in the Ophthalmology waiting room. Maya gave her a “kiss” along with a great big hug. We even got to see Dr. S! and Maya gave her a “kiss” too. We then headed back to Oncology where Maya got to do her craft as we waited to see the oncologist, Dr. C. She continued to hand out “kisses” to different people in the waiting room too! We waited for over an hour (I ended up having to call Mr. D’s office to let them know we were going to be late). Once she called us, we practically ran to her office in order to get the news faster! When we walked into her office, Maya went to the examination table and pulled out the hidden steps and climbed up. Dr. C took advantage of that moment to examine Maya quickly. She then let us know the good results of all the tests. Maya gave her a “kiss” and we were on our way. We left her office very happy and relieved.

We got to Mr. D's office around 11:05 a.m. Maya was very cooperative when he removed the conformer that is now in her eye socket (a clear contact lens). She watched in the mirror as he removed it and she didn’t seem bothered by it. We had a glimmer of hope that the rest of the morning would be so easy. Boy, were we wrong. From that point on, Maya went back into fight mode and fought us during every step. Robbie had to pin her arms above her head so that her head wouldn’t move. Mr. D put in the mold (lens with holes and a tube attached) and then injected the white paste into the tube. It took about a minute for it to set and then we had to hold her down again for him to remove it. Then he put a new conformer back in before we left. She got to keep the old one, which made her incredibly happy. She will be using that conformer for her bear, Kayla. Despite her fighting, when it was done, she was smiling again and handing out “kisses” to everyone. Mr. D even gave her a special flower pot so she can grow a “Forget-me-Not” at home. So the mold is done and next week we go back for the painting and fittings. They asked us to practice taking the conformer in and out in the hopes that she will cooperate better next week. We will do our best to do our homework!

Our day ended with lunch at Pizza Hut (Maya’s choice) and she enjoyed pizza and ice cream. I, for one, am pizza-d out! She was happy and that’s all that matters in the end.

As I mentioned in a previous note, we now know that our daughter fights obstacles with everything she’s got. She is such a mild-tempered, happy kid in her everyday life but faced with difficult situations that are out of her control, she fights. It shows us her strength and the fact that she will not let anyone walk all over her, a trait that makes us very proud. At the same time, this trait is very emotionally and physically exhausting. Robbie and I are completely wiped from our two days and we are amazed by parents who have to do this every day for months and even years. Our daughter continues to amaze us and we continue to be there for her to the best of our ability.

Spending time in an Oncology waiting room changes one’s life forever. It’s both a happy and sad place all at the same time. The people who work in the waiting room are so friendly and loving and they really help to make everyone feel welcome there. This morning there were two beautiful little girls undergoing chemo who just looked so strong and happy. They were playing and smiling and having a great time. There was also a little boy who we had seen the last time we were there. Back in November he was happy and seemed strong. Today he was frail and weak and just looked sad. It’s so difficult to sit there and see what these other families have to go through. We are incredibly thankful and grateful that there was no chemo in our journey. We have such a respect and love for these families who have to go through chemo. Their strength is an inspiration to us.

We watched a mom today come back into the waiting room and announce to one of the women working in the waiting room that her son’s cancer was back. Robbie and I looked at each other and our hearts broke for this poor family. We will be saying a special prayer for them tonight and they will be in our hearts forever. These families are incredible and we hope to one day be able to do more for them. We have seen firsthand how cancer does not discriminate.

Thank you again for all your notes, your thoughts and your prayers. Thank you also for reading my notes. Sometimes I feel like I ramble, but the rambling is part of my processing and healing.

Love and light to you all.