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.

Asking You Once Again for Your Thoughts and Prayers

Our big week has arrived and we are once again asking for your thoughts and prayers. We head to Montreal tonight after supper for a 9:00 a.m. appointment at Sainte-Justine with a physiotherapist. Maya’s motor development will be assessed to see if the loss of sight has had any impact. At 10:00 a.m. we will be meeting with our Oncology nurse who will be putting in Maya’s I.V. and then we have an 11:00 a.m. appointment for an M.R.I. under anesthesia. Then back to our friend’s house to rest and recover from the anesthesia. Wednesday morning we have a 9:00 a.m. appointment with our oncologist for the results of the M.R.I. and then off to the ocularist’s office at 10:30 a.m. where Maya will have the mold of her eye made.

We have been preparing Maya for a while now and she seems ready. I have a bag of Hershey Kisses and will be handing out “kisses” as often as needed. She has already requested a hot chocolate and we will be dining at the restaurant Wednesday after her mold. As we have explained to her, we plan on making each trip to Montreal a good balance between her tests that are not so much fun with special treats or activities that are fun.

Robbie and I are glad this week is here and we will be relieved and happy when it’s done. The M.R.I. is part of her long-term monitoring and we expect the news to be good. However, I think there will always be a small part of us that will be worried and afraid. Going back to the hospital always plunges us back to November when the news wasn’t so good.

So please keep us in your thoughts and expect good news upon our return!

Sending love and light once again.

Genetics Appointment

Some of you may be aware that retinoblastoma can either be genetic or an accident of nature. Following Maya’s surgery, the tumour in her eye was sent to Toronto to have genetic testing done on it in order to determine which type of retinoblastoma she had. The implications are enormous. If genetic, Ella would be likely to develop the same cancer, Maya would be at risk for developing a tumour in her other eye and both would be at risk for passing this on to their future children. Needless to say, although I didn’t mention it in detail in past notes, this was a huge burden to bear during the entire length of Maya’s ordeal.

On December 8^th, we got great news from Dr. S! telling us that the results of the genetic testing were excellent: Maya did not seem to have the genetic form of retinoblastoma. However, she mentioned that there still was a 10-15% chance that these results may not be accurate but that we would be having a meeting with Genetics to explain this in more detail. We got a phone call mid-December from Genetics confirming an appointment with them January 7^th. I have to be honest and say that we were somewhat dreading this appointment. We are still shaken up by the initial news we received November 10^th when Maya was diagnosed. The feeling you have when you hear that your child will lose their eye and that they have cancer is a feeling one does not forget. So the prospect of going back to the hospital to have doctors explain to us that there is still a chance that these results are not 100% proof was very unsettling and remained a weight on our shoulders until Friday.

Thursday evening we ventured back into Montreal for a 9:00 appointment at Sainte-Justine the following morning. Our friends Kim and Isabelle generously put us up for the night, preparing a delicious meal for us and making sure Maya had plenty of arts and crafts materials to keep her entertained (or as Maya calls them, “Arts and craps”.) A good game of “touché” was also played by all (tag) as well as hide-and-seek. After heart-warming conversations and a relatively good nights’ sleep, it was time to head to the hospital.

As we walked through the spinning doors of the entrance, we were greeted by an unbelievable train display that was still set up from the holidays. We spent a few minutes admiring the trains and the little skiers that skied down a steep hill. Maya was especially excited to see that the trains all had the Montreal Canadiens’ symbol on them. We then headed to the Genetics department where we checked in, had Maya weighed and measured and sat in the waiting room. We were not there for more than 10 minutes when the doctor called us into his office. He was very friendly and warm and made us feel at ease immediately. He asked us questions about our health and then proceeded to draw detailed family trees for both Robbie and myself, wanting to map out the history of cancer in our families. It didn’t take long and he was happy to see that cancer in both our families is sporadic at best.

Then he explained the results of the genetic testing to us. Please keep in mind that I will explain this to the best of my ability...I am not an expert! They tested both Maya’s tumour and her blood to see where the mutation of the retinoblastoma (RB) gene had occurred. Had they found the mutation in both the tumour and her blood, it would have meant that her retinoblastoma was genetic. In Maya’s case, they found the mutation in her tumour only. They found that there was a bad copy of the RB gene where one strand of the gene had an entire section missing and the other strand was non-existent. Chances are there was only one cell that mutated causing her tumour to grow. It’s amazing to think that one little cell could have caused this huge situation.

So what are the implications? It means that they are 99.9999999% certain that her retinoblastoma was not genetic and the risk of her developing a tumour in her left eye is almost non-existent, as well as the risk of passing it on to her future children.  Since there is no history of cancer in our families and they did not find anything in her blood, they are almost certain of the results. She will be monitored closely over the next several years starting at every 3 months in the beginning. As time goes by and her scans come back “clean”, the check-ups will be spaced out more. The more time that goes by without any problems, the more the doctors will be certain that it was in fact the non-genetic form. As for Ella, they are recommending that she be re-tested in about a year just to make sure although she really is not at risk for anything. They just want to err on the side of caution and have her tested up until the age Maya was when she developed her retinoblastoma.

The doctor was so kind and explained things very thoroughly for us. He even offered to meet with Maya again when she is older to explain it to her directly. He hopes that advancements in medicine will have a test once she is older that would allow her to know for sure that it is non-genetic. We will hope for that too!

We left the appointment feeling relieved and happy. It was great news and we can now move forward. We even celebrated by going to our favourite Montreal restaurant, Café Santropol. We enjoyed amazing sandwiches, hot soup and moist carrot cake for dessert. It was a nice way to balance the unpleasantness of the going to the hospital with some quality time just the three of us.

Next on our agenda is having Maya’s prosthetic eye made. We can also begin to reflect about exactly how we will give back to the hospital with a focus on retinoblastoma. We have many ideas simmering and will take the time to come up with a plan of action!

Sending you love and light,

Discovering a New Art Form

Many people have been writing to know how our appointment with the ocularist went today so I thought I would share a summary of the day’s events.

Yesterday we spoke with Maya about where we were going and who we were going to see. We encouraged her to think of any questions she might have for the ocularist that might make her feel better about the whole situation. When she woke up this morning, she explained to me that she only needed one thing: she wanted to ask the ocularist to show her an eye.

Our appointment was at 10:30 this morning and anyone who knows us well knows that we gave ourselves plenty of time to get there in order to be on time, which meant that we arrived half an hour early (it took WAY less time to get there than we anticipated and we were blessed with no traffic!) When we finally found the place, I was quickly reminded of how much I detest street parking in Montreal and why I did not own a car when I lived there. Fortunately for us, the parking angels were generous and we found a spot near the office.

When we walked into the office, we were greeted with smiles and we instantly felt at ease, as did Maya. There were puzzles in the waiting room for Maya and coffee for us.  It wasn’t long and we were called into an office where we were introduced to the various people who work there, including Mr. D, the ocularist. Again, everyone was so welcoming and warm and Maya took to them immediately. Mr. D asked us if we had any questions and Maya was quick to ask to see an eye. He took out a box filled with prosthetic eyes of different shapes and colors and Maya spent quite some time looking at them and holding them in her hand. He explained to her that everyone is different and they all need different kinds of eyes. Some eyes are thick, some are thin, some have many red veins, some are blue, some are brown, etc. Maya was truly captivated by them and kept asking to see more. When Mr. D explained to her that he would be making her a special eye just for her, her face lit up and for the first time we saw excitement in her. He asked us some questions regarding Maya’s temperament and how we thought she would react to the various steps and he examined her eye to see how it is healing (it’s healing perfectly).

Then we went into another room where we were introduced to Joëlle, his apprentice, who actually began painting the iris for Maya’s prosthesis. Wow, did we ever discover a new art form today! She first looked at the iris in Maya’s good eye and examined it closely to choose the matching size. She then took out what looks like the top of a flat-headed thumbtack on a long wooden stick. She then mixed the paints with a clear liquid that allows it to dry instantly and began painting an iris. She used a very small paintbrush and painted one small line at a time. She would stop often to look at Maya’s iris and then she would paint another coat. Maya’s eye is particularly difficult to copy because she has brown, orange, green and grey in her eye. Watching Joëlle work was incredible and we were amazed by how challenging this job is. Maya was helpful and always looked at her when she asked, which facilitated her job. She was able to look closely at Maya’s iris in an attempt to match it as closely as possible. As she painted, she chit-chatted with Maya and had Maya laughing and singing to her. Maya at some point was even tickling her and tried to initiate a game of tag. Joëlle made her very difficult job look so easy. Robbie and I took it all in and enjoyed watching her create what will undoubtedly be a masterpiece made with love. Maya was also impressed by it and was excited to see the iris of her fake eye take shape.

Once that was done (it took about forty-five minutes), Mr. D showed us a video of a mold being made on a 5 year-old. Maya watched it with us and she was really impressed by how happy the little boy seemed. It was good for her to see that it doesn’t hurt and that the little boy smiled during the whole thing. It also gave Robbie and me the information we need to be able to talk to Maya about it ahead of time and to prepare her for February 9^th when she will have the mold of her own eye made.

So here is what we know after today:

1-On February 9^th they will make the mold of her eye.

2-On February 16^th, we will be at the clinic from 9 a.m.to 5 p.m. to finish painting the prosthesis. There will be fittings, painting sessions, etc. We need to bring snacks, toys, videos and treats to keep Maya busy and focused so that they can do their work. It will be a big day, but at the end of it, Maya will have her new eye.

3-The prosthesis will need to be removed and cleaned by us every 3 months, something that I still find difficult to imagine doing, but I know we will get used to it.

4-Maya will go into the clinic every year to have the prosthesis checked. She will need new ones as she grows so that the prosthesis grows with her. Also, at the beginning, it takes up to 2 years for the eye socket to completely heal and lose all its swelling. Therefore, they often have to make a new prosthesis to ensure a better fit once the healing is complete.

5-They do everything they can to make the prosthesis look like the other eye. However, the eyelid may not fall exactly the same way as the other eye, the range of movement will not be as great as her real eye and the color may or may not match exactly at first, depending on how well Maya cooperates on the 16^th. The more Maya cooperates and lets Joëlle look at her eye, the more precise the coloring will be.

We left the office feeling excited and relieved that we now have all the information we need. Maya is also more excited than she was and we believe she will go through this process just fine. Once again, our hearts filled with pride as we watched Maya woo everyone with her happiness and love.

To add to the growing list of things we have learned during this entire saga is just how many amazing people there are in our health system. Throughout this very difficult process we have encountered so many friendly, caring and giving people. Maya has received the best care and we have continuously felt as if Maya were the only patient these specialists have. For that we are truly grateful.

Sending you love and light.

Spreading Holiday Cheer!

Much of our holidays were spent with family and friends and it did us a world of good. The good news we received December 8^th concerning Maya gave us great joy and lightness. This was quickly followed by a feeling of exhaustion like we’ve never felt before —a feeling of exhaustion so deep that we could hardly bring ourselves to get up out of bed in the morning, let alone be active with our two young girls. Thank goodness for friends and family who brought us meals and offered to take the girls and allow us some much needed rest and quiet time.

All of you who have been following our journey are aware just how quickly things happened in November and how intense it all was. Robbie and I ran on adrenalin for about a month and never really had time to fully take in and process everything that was happening. Once we got the good news, our adrenalin rush melted away and we were finally able to take the time to process and integrate everything that had happened within the last month.

This holiday season allowed us to share our happiness and sadness with the ones we love. It also gave us the opportunity to hug and thank the many people who have been sending us their love and light throughout this time. And it gave many people the opportunity to see Maya with their own eyes, to play with her and to see just how well she is doing. Everyone who spends time with Maya is amazed by how happy and healthy she is and how unaffected she seems to be by her loss of eyesight. Her presence at various family gatherings eased people’s minds and allowed them to heal in their own way.

The most magical part of this holiday season was watching Maya surrounded by her closest family and friends. Her heart was filled with so much love that it spilled out everywhere she went. At our first family supper on the 22^nd of December we were all sitting around my parents’ dining room table ready to share in our annual turkey supper. The table was beautifully set, there were candles and Christmas lights everywhere and the ambiance was festive. After saying grace, Maya looked at everyone around the table and said, “I just love having my family around me”. There was not a dry eye in the house. How can a three year-old know the perfect thing to say? There were many moments like these throughout the holidays where Maya spontaneously did or said something that filled our hearts with love.

Maya has always been a very loving person and her experience with losing her eye to cancer has only enhanced that quality within her. She seems set on enjoying life and making the most out of every moment. She is confident, strong and able to express herself in ways I could never have imagined. She is wise beyond her years and, boy, are we ever proud of her!

Now we embark on a new journey of having Maya’s prosthetic eye made.  We go on Monday (January 3^rd) to meet with the ocularist for a preliminary consultation. We are excited to get this process started and have a better idea of what steps will be taken before finally getting the prosthesis. Being a creature of habit, Maya does not want her new fake eye and prefers to keep the clear lens she currently has in her eye. There is still a lot unknown for her and we hope that Monday’s appointment will help her feel better about the whole process.

As the holiday season comes to a close, Robbie and I finally feel ready for “normal” life and getting back to our regular routines. We both recognize that we will forever be faced with what we all went through between November 8^th and December 8^th and that’s fine. It is now a part of our journey and we will live it in the best way we possibly can.

 We hope your holidays were joyful. Enjoy every day, smile lots and spread as much love and light as you can around you.

Dr. S!'s Christmas Gift

Today we received the most wonderful phone call of our lives. Dr. S! (picture us with our Superman poses) called to tell us that Maya WILL NOT need chemotherapy. Woohoo!!! Robbie and I went from feeling exhausted and heavy to feeling light and bouncing off the walls. It’s the perfect Christmas gift.

She explained that they spoke to experts all around the world and all but one recommended that Maya have chemotherapy. The experts from Argentina were the only ones who did not recommend chemo and they were the only ones with data to back-up their recommendation. Dr. S! explained to us that Maya’s tumour had been touching parts of the eye that could cause it to spread easily but had not invaded those areas in any way, shape or form. The experts from Argentina have had a lot of experience with this type of tumour and have seen that there is very little chance of it spreading anywhere else.

Because there are many risks involved with chemotherapy, especially for secondary cancers, Dr. S! explained that she and the other two doctors who are part of the retinoblastoma team (including an oncologist) feel that the risks of chemotherapy do not outweigh the risks of Maya developping cancer from the retinoblastoma cells. She will be monitored closely and will have regular M.R.I.s. Although it didn’t look like it at first, removing her eye was her cure.

Okay, so as I was writing this, the phone rang, Robbie came running down the stairs and handed it to me. It was Dr. S! again with another fabulous Christmas present : the genetics came back 3 months early and they are negative! She was in shock as the genetic results rarely come back so quickly. What does this mean? Maya’s retinoblastoma was an accident of nature and Ella is not at risk for anything. Wow…so much to digest in such a short time. I have never in my life been on such a roller-coaster ride.

Over the past several weeks, our story created this ball of energy filled with love and light. Your thoughts and prayers have supported us and I now believe have helped to create this miracle for our family. It will be a very Merry Christmas for our family this year. Thank you to all of you for giving so much to us and please keep spreading the love and light to all of those surrounding you.

Sending you much love and light.

Verdict Not Quite a Verdict Yet

Today we travelled to Montreal to go and see Dr. S (or as we call her Dr. S! with our Superman poses). It was a surprisingly long wait considering we had appointment...a little over two hours. Maya played, prepared us pretend meals, colored and enjoyed putting together some nifty Caillou puzzles. At this point, Robbie and I were calm and ready for the news.

When Dr. S! called us into her office, she greeted us with her usual smile and asked Maya for a hug. Maya's relationship with her is interesting because I can sense that Maya likes her, but she also associates her as the person who took her eye. It will be interesting to see how the relationship grows over time. It's difficult to explain to a 3-year old how Dr. S! saved her life.

Moving on. So Dr. S! examined Maya's eye and all is perfect. It's healing beautifully and drops are no longer needed. She then went on to give us the results of the 3 tests:

1-Bone Marrow puncture: clean

2-Lombar puncture: clean

3-Pathology of the eye: optic nerve is clean, back of the eye is clean and the front of the eye, where the tumour was located is iffy.

They found NO visible signs of cancer cells ANYWHERE, but because the tumour was touching parts of the eye that could cause the cancer to spread quickly, they are not sure what to do. Although there is a 99% chance that there is no cancer, that 1% is pushing them to question whether or not Maya will need chemo treatments or not. Therefore, this is where we stand as of today. Dr. S! and Dr. C (the oncologist) have been contacting all the experts in the field in France and across North America to get their assessment of the situation and to see how they should proceed. Since retinoblastoma rarely presents itself the same way twice, the specialists that work in this field often consult one another for advice.

They are hoping to have responses from the other specialists early next week and are hoping to call us in for a meeting sometime next week. Maya may or may not receive chemo, and if she does, we have no idea if it will be for 2, 4 or 6 cycles (1 cylce per month).

What does this news mean for us? A huge weight was lifted off our shoulders today. Robbie and both suspected that this journey was not yet done, but to know that there are no visible signs of cancer cells anywhere is a HUGE relief. If we end up having to do chemo, then at least it is preventative more than anything. We have felt very passive over the course of the last two weeks and now we are back being active. Regardless of the treatment, Maya will be fine. Do we want her to go through chemo? Of course not. But we have seen her strength the past few weeks and we have seen the strength within ourselves as well. We know that we can get through anything.

Maya continues to be happy. She got new glasses today which will serve to protect her eye. She is ecstatic about this new purchase (our wallets our not...hehe!)! We also watched a YouTube video last night that showed a girl removing her prosthetic eye and putting it back in. Maya's comment when the video was done "She's such a pretty girl with her new eye." She is starting to feel excited about getting her new eye! Plus, she discovered last night that she can play peek-a-boo by hiding only her good eye. When she hides her good eye, she can't see us and she now thinks that's hilarious.

The mood is lighter in our house tonight and Robbie is going back to work tomorrow! Christmas is just around the corner and life will continue. Please keep sending us your love and light. It has and will continue to make a difference. I will continue to keep you updated as we have news.

Thank you again from the openness of our hearts.

Child's Play

Two weeks have passed since Maya's surgery and it's still difficult to process everything that has happened in such a short time. We have spent the last two weeks mostly just the four of us, with a few visits from family and friends. We have enjoyed our time together playing, decorating for Christmas and breaking out the Christmas videos. Falling back into our routine has helped to bring a sense of normalcy to our lives.

Many people have been asking how Maya is adapting to her new situation. She continues to amaze us with her strength and understanding of the whole situation. Since the beginning of this journey, Robbie and I have struggled with what to tell Maya and how. We want to keep her in the "know" without scaring her. Our approach has been to discuss what is happening in the present moment as this is what is concrete for her and not go into what is still abstract.

Over the past two weeks, Maya is the one who has brought up the subject of her eye. Each time it has been during some random moment like when we're reading a book, or in the morning when she climbs into bed with us. Sometimes it has been a comment and other times a question, to which we have answered honestly:

1-Maya: "I wish I could have my old eye back."

Us: "We do too, but your eye had a boo boo in it that could make you very sick. We're sad too, but we had to make that decision so you can be safe and healthy."

2-Maya: "Mommy, why can't I see out of my new eye?"

Me: "The doctor had to take your eye because of the boo boo. You'll see in new ways, just not in the way you used to. Your left eye will learn to see really, really well and will do the job of both eyes."

Maya: "I love you Mommy."

Me: "I love you too, Maya."

After both these conversations, Maya went back to what she was doing and didn't seem phased in the least. When she is ready, she asks questions and her understanding runs deeper than we could ever imagine. We are already talking about what her new eye will be like and what the process will be to make her new eye. She, like us, is making her peace with her new situation.

As I mentioned in a previous note, play has been an important part of her healing and a great opportunity to explain her new situation. Tonight, we were playing with her toy horse and she was the Mommy and I was the doctor. She came to me and explained that her horsie had a boo boo in his eye and I needed to take the eye out. So I did as I was told and then Maya said it was time for her horsie to have a new eye. I jumped on the opportunity to go through the process she will soon experience with the ocularist. We made a pretent mold of her eye and then I pretended to be the artist who painted the eye so it looked just like horsie's other eye. Next thing I knew, Maya became the doctor and I was the Mommy. She removed horsie's eye, made a pretend mold, painted a new eye and put it in. Pure magic.

As much as Robbie and I have struggled with how much to tell Maya, she has led the way for us. She has let us know what she needed to know and we have been honest. At the beginning of this journey, we told Maya that there would be some difficult decisions to make and we asked her if she trusted us to make those difficult decisions for her. She said yes every time and we promised that every decision would be made in her best interest and that we would be there with her every step of the way. The past two weeks have shown us that this trust goes both ways: she trusts us and feels comfortable coming to us and we trust her to let us know what she needs.

This Wednesday at 10:45, please think of us. We are going to Sainte-Justine for a check-up of her eye and we hope to have the results of the lombar puncture, the bone marrow puncture as well as the pathology results of her eye. These results will determine whether or not she will need chemotherapy. We hope to come home with good news.

Thank you again for all of your thoughts, prayers and candles. So much love and light has spread around the world in honour of Maya and for that we thank you wholeheartedly.