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.