Jouvence 2012

Every year, Leucan organizes a respite weekend for families who have a child who is battling or has battled cancer. It is held at Jouvence, a warm, welcoming and family-friendly place in the Eastern Townships offering outdoor activities for all ages. This weekend includes a two-night stay filled with activities for the entire family as well as delicious meals — all at a minimum cost to the Leucan families.

Last year was our first year at this event. We arrived on the Friday evening, but the girls and I got hit with a horrible cold and we had to leave the premises the following morning so we wouldn’t contaminate the weakened immune systems of the children in treatment around us. We were, to say the least, extremely disappointed and were determined to go again this year with our health intact.

Success! We have just returned from our amazing weekend with our bellies overflowing (the food was abundant and delicious), our bodies tired from the wonderful activities and our minds and spirits once again filled with awe and inspiration after having heard everyone’s stories.

Many people have either not heard of Leucan or have heard of it but don’t really know exactly what it does. Leucan is an organization that provides support to families who have a child with cancer. They provide some financial support, especially to families whose child is undergoing extensive treatments that prevent the parents from working. They provide free massage, art, and music therapies for the child in treatment as well as their parents and siblings. They provide documentation, including storybooks that help siblings understand what is about to happen to their sick sibling. They plan many activities during the year that allow families to experience “normal life” at very low cost (such as trips to the Granby Zoo, the sugar shack, Jouvence, etc.). Every Christmas they have an elaborate Christmas party where Santa always makes a special visit and spoils the kids rotten. Basically, they are there every step of the way as soon as the child’s cancer is diagnosed up until the family decides they don’t need the support anymore (which oftentimes can be many years after the child’s cancer is either in remission or cured). They also provide ongoing support for families who lose a child to cancer.

The weekend at Jouvence is organized so that the kids can be pampered (the ones with cancer and all their siblings), the parents can relax knowing their kids are being pampered and the families can enjoy quality time together.

This year, we arrived Friday evening after supper, where we were given the keys to our room and time to unpack and get settled in. We were in La Rafale, a building that has many private rooms with a large common room. The kids had their own little loft with a gate at the top of the stairs, giving the impression that they were sleeping in their very own tree house. It was quite charming!

An hour after our arrival, we headed to the common room where there were healthy snacks for the kids and the organizers introduced the many volunteers who were there to accompany the children during the following day’s activities. The volunteers were mostly made up of young, dynamic and loving individuals whose one and only goal was to make the kids feel as special and loved as possible. There was also a young doctor who was there to make sure the kids got their meds when they needed them and to monitor their health. A photographer was also present to capture every moment on camera.

We then gathered outside around a campfire, where we had our first opportunity to talk with the other families present. We went to bed late, excited for the following morning.

Saturday morning it wasn’t long and the volunteers “kidnapped” the kids to take them to breakfast. Although we sat at a table not too far away, every time we looked at Maya and Ella, they were smiling or laughing at something one of the animators did. The animators helped each child go through the buffet and pick out what they wanted to eat and helped them through the meal. Once the meal was done, the kids ran over, kissed their parents goodbye and headed off to their first activity. Their day was filled with boating, rock climbing, zip-lining (yes, Maya had her first zip-lining experience; Ella wanted nothing to do with it!) and a treetop adventure trail. Jouvence had animators that led most of the activities, which all had to do with the theme of the summer Olympics. We occasionally saw the kids running through the grounds, and got to give them hugs at lunchtime, but apart from that, they were kept very occupied!

During that time, Robbie and I each received a long massage from our Leucan massage therapist, hiked through the woods, read, relaxed and capped the day off with a drink on the terrace. The day ended with everyone once again congregated in the common room with popcorn and other snacks, a movie and snuggles on the couch. During the movie, one of the massage therapists went around the room and gave each and every child a foot massage (which Maya received first because when the woman asked if anyone wanted a foot massage, Maya grabbed her hand and told her “YES, PLEASE!”) Sleep came quickly once we returned to our rooms!

On Sunday morning, Jouvence had organized 2 family activities: a short rally and a baking activity. We made muffins as a family and had our very own little bag of delicious, healthy muffins to bring home with us. The morning ended with a medal ceremony where the Leucan animators presented every child with a “gold” medal for one of the activities they had participated in the previous day. Maya received her gold medal for excelling on the treetop adventure trail and Ella received hers for her fast running (yes, she was wearing her new, very fast shoes).

We left feeling content, happy and very tired (a good tired). Maya and Ella left with many wonderful memories about the activities they participated in, but mostly with memories about the new friends they made and the love and attention they received from their wonderful animators, both from Jouvence and from Leucan. We parents were inspired to see the children running around and having a good time and to meet other families whose children are doing well.

What struck both Robbie and me about this weekend was how it gave us the time to really visit with the other parents who we’ve often seen at other events but have never had the opportunity to interact with. Seeing that Maya has been monitored at Sainte-Justine and not at the CHUS, we had never had the opportunity to meet these parents before. We got to share our experience with Maya with them and got to hear their stories. What was amazing to us was that every single child there had the same cancer: leukemia. We learned a lot about the cancer itself as well as how it is treated. We also got to hear how Leucan has helped them over the years to not feel so alone and has provided them with the support they have needed to get through the many years of treatments.

The best explanation we received from a father about what Leucan means to him was the following: Leukemia, a cancer of the blood or bone marrow is a cancer that is treated with chemotherapy in small doses over a long period of time. The first few months after diagnosis are more intense and they can spend up to 30 days in the hospital for every treatment. Once the cancer cells are no longer found in the blood, they fall into maintenance chemo which is done once a month and combined with many different pills to take. Boys undergo treatment for 3 years and girls for 2. He explained to us that when their son was first diagnosed, their family and friends were there. They supported and helped out as much as they could. But as time went by and things were less “critical” or intense, they all went back to their normal lives. When his son’s hair grew back and treatments were more spread out, people sort of “forgot” he was sick. The father explained that their own lives are far from being back to normal, as they are still in the thick of things. For him, Leucan is always there; they never stop supporting them. It truly was a heartwarming story which I feel the need to share with you now in the hopes that it will help more people truly understand and appreciate what this wonderful organization does.

Many organizations that target sick children do a lot to help advance research in various fields and to provide specialized equipment for them. Leucan is there for the families and does everything it can to support them through the darkest of times.

I will never forget the morning after Maya had her surgery and we were still digesting the news of her cancer, when a smiling woman knocked on the door to our room, walked over to Maya’s bed and presented her with a soft, pink blanket, new toys and special t-shirts with buttons on both sleeves in case she had to have chemo. Maya’s face lit up as if it was Christmas morning and Santa had walked through the door. She gave Robbie and me a big red bag with an integrated cooler backpack filled with documentation and picture books to read to our kids and told us, “We are here for you, whatever you need.” And you know what? They have been.

Ella has benefitted from their art therapy program, which is designed to help children express their feelings more concretely. We have regular massages, especially after hospital visits. And most importantly, Leucan has provided all of us with many good memories from a very difficult time in our lives.

One of Leucan’s biggest fund-raising campaigns involves the money boxes at Halloween. So this Halloween, when children show up at your door with a Leucan box hanging around their neck, pop in a few coins knowing you’ll be helping Leucan continue to do what it does best: brightening up the lives of children and their families who are living with cancer.

 

 

 

 

Another Big Step in a List of Big Steps...

A prosthetic eye, after a while, is covered with a residue that causes it to become dull and somewhat dirty-looking. Therefore, every 3 months, we are supposed to take it out, put it in a bowl of hot water and scrub it with a lotion-free kleenex until the shine is returned. Up until now, the due date to clean Maya's prosthesis had fallen at the same time as doctor's appointments or appointments at the ocularist, where they removed the eye and cleaned it themselves. Therefore, until today, we'd only had to do it once, which I have to be honest and say it has been a blessing. One year ago, when we did it, Maya screamed so loudly, for so long, she fought us so hard and Ella was so traumatized by the whole experience that we were scared to have to do it again.

But we found ourselves at the 3 month due date with a dull-looking eye and no imminent appointment where someone else could do the job for us. So tonight, as Robbie read Maya a bedtime story, he noticed she was rubbing her fake eye and he asked her if something was wrong. She said her eye was a little itchy and that there was "guck". Robbie asked her if she wanted us to take it out to clean it, that it would take the "guck" away and make it all shiny and new. At first she hesitated but then she said, "Okay Daddy." So I got up, got the bowl of hot water and the little suction cup we use to help take the prosthesis out and we all gathered on Maya's bed. I held her left hand, Ella held her right hand (and also kissed it) and Robbie proceeded to take the prosthesis out. Maya lay still, looked up and before we knew it, Robbie had popped it right out.

Maya then ran straight to the mirror where she inspected her empty eye socket and I cleaned the prosthesis. We all took the time to look carefully inside her eye, including Ella who is always so fascinated by it. We talked about what a beautiful job Dr. S did when she removed Maya's eye and how beautifully pink her skin is. We looked at the prosthesis and talked about how beautiful and real-looking it is and how much love went into making it. Maya then said, "I'm the only one in our family who has a fake eye, aren't I?" We answered yes and she went on to say, "I love my fake eye. I'm so happy they took my other eye out. I'm really proud of my fake eye."

As I finished cleaning her prosthesis, Robbie ran downstairs to find a book a friend of mine had sent to Maya after her surgery. It's a book called "My Fake Eye" and it tells the story of a little boy and his experience getting his fake eye. When we returned to Maya's bed, Ella grabbed the book and sat on her own bed mesmerized by the pictures as Robbie and I proceeded to put the eye back in. Maya once again looked up, lay calmly and waited while Robbie gently placed it back in. It only took a few seconds and it was done. Maya then gave all of us hugs and her face beamed with joy and pride.

We then sat together the 4 of us and read the book together. We are so proud of our two beautiful daughters. I am so incredibly thankful that Maya has accepted what happened and seems to be growing with pride and confidence instead of with shame and fear. I'm thankful for the family that we are and that we have been able to accompany Maya through this journey with open hearts and much love.

This is a big step for Maya who now knows that taking out her eye is "no big deal!"

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.