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.
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