"Home Sweet Home"

“Home Sweet Home”: This phrase has taken on a new meaning for me after spending 3 tortuous days in a hospital.

So the last time I wrote, we had received good news regarding the MRI. Tuesday morning began early, at 5:45 a.m. to be exact. We did some last minute packing, got dressed, hugged Ella goodbye and headed out the door. The ride to Sainte-Justine Hospital was filled with tears as Maya started realizing what was about to happen. She kept repeating: “I don’t want them to take my eye.” As parents, our hearts ached beyond explanation as we told her we were also sad she had to lose her eye and that is was okay to be upset. We reminded her of why this decision had been made and asked her once again to trust us in making the best and safest decisions for her.

Once we got to the hospital, we put her in the stroller and started to walk to the entrance when out of nowhere (and I mean nowhere as the hospital is surrounded by busy streets and no homes) a cat appeared. He immediately came over to Maya and she was able to pet him for a few minutes. I told her the cat was there to wish her luck from all the other cats and send her love. The cat’s presence immediately calmed her. Then she got excited because we were approaching the entrance with the revolving doors, which she loves. My parents and our friend arrived at this moment and we headed up to the pre-op floor. When we got to our room (and I really mean a large closet with two other children there with their parents), Maya became quite defiant and aggressive in her behavior and kept raising her voice asking to go play. It was hard for us to see her this way as she is normally so calm. Once the nurse saw her, we were able to bring her to the playroom where she ran, played and laughed for a good hour before her surgery. It did us all good. During this time, my father reminded me of something important: when faced with obstacles, our natural instinct is either to fight or to flee. Maya fought. I saw a new strength in her and realized that my daughter, when faced with an obstacle, will not back down. It changed my whole perspective and filled my heart with pride (and relief!).

She received a pre-sedation to keep her calm minutes before she was wheeled to the surgical unit. There are no words to describe what we felt as we waited for them to come and get her. As they wheeled her away, we crumbled. We had to stay in that waiting room for a half hour, the time for them to put her under and complete the eye exam.

Dr. S (and she really is super) came to see us with good and bad news: the good news, there were officially no tumours in Maya’s left eye; the bad news: the tumour in the right eye, although not huge in size, was located in the worst spot, towards the front of the eye and touching parts of the eye that could allow the cancer cells to spread more easily. She explained that because of this discovery, there was no other option than to proceed with the removal of the eye and that they would try to arrange lombar and bone marrow punctures during the surgery while she was under. She made no promises as she thought it may be difficult to organize it so quickly. Our hearts sunk as she told us the news and renewed our fear of the cancer having spread. Then came the very long wait in another waiting room.

The wait was one filled with meditation, prayers, crying, shaking, and fear. We had our candle lit (we had a battery operated one) and we clutched Maya’s stuffed animals. I did some pacing in the hall with my dad and we had some great talks about life, about Maya and about all the good things that have come out of this very difficult situation. After three hours of waiting and lots of nausea, Dr. S came down the hall and I ran to get Robbie. She had a smile on her face and told us the surgery went as well as a surgery could go. She explained that they had not been able to do the two punctures, but that they would try to arrange it for the end of the week. Her calmness reassured us and we were just thankful that all had gone well.

Then we waited another three hours for Maya to wake up. With the pre-sedation, it took longer for her to wake up. After about two hours, they came to get me so I could sit with her. I sang her songs, told her stories and repeated how much we love and admire her. When she finally sort of woke up, she was transferred to her room. Everyone was relieved to see her. When Maya first woke up in her room, she was a little sad, but mostly groggy.

My parents, our friend and Robbie left (only one parent was allowed to stay) and I was on my own. That was quite a daunting and lonely feeling, but it was what I had to do. I was glad that Robbie would be with Ella, who needed us too. Shortly after they left, Maya woke up for good and began asking to eat. She had some water and kept it down. Then the nurse offered her an orange popsicle and Maya enthusiastically accepted. As she licked her popsicle, I saw her first smile…this filled my heart with love and peace once again. I called Robbie to let him know, which allowed him to feel what I was feeling. He got to talk to Maya and hear her happy little voice.

The night was a long one…we were in a room with 3 other kids (all older than Maya) and there was a child across the hall that kept screaming whenever the nurses came to check on him. Dealing with my own child’s situation was enough…having to deal with other children’s pain was especially difficult. Maya slept well and woke up once in a while. We sang songs and told each other stories, we snuggled and she ate more popsicles. Around 3:15 a.m., she asked me for vegetables, so she got a yogurt instead. I made the nurse laugh with that one! Maya at this point was happy and bubbly and seemed to have very little discomfort. She had Tylenol to make sure, but she never complained of pain. At this point I was able to doze off to sleep for a couple of hours. I was relieved and ecstatic to see the light outside and know that the night was behind us. Robbie and the crew arrived around 7:30 a.m. bringing me love and support.

Maya was called down to ophthalmology around 8:00 a.m. and her bandage was removed. This moment, which we had been anticipating for some time now, was much easier than we expected. Maya’s eye was slightly swollen, but she was still our Maya. Dr. S was able to arrange the punctures for 1:00 p.m. and so Maya was fasting yet again. The doctor then took Ella and examined her eyes (as this could be a genetic disease) and EVERYTHING IS FINE. Phew! That was a huge weight lifted off our shoulders. One sick child is enough, thank you very much.

The punctures went well. Maya was sedated just for the duration of the test and she woke up ready to eat pizza and French fries (a promise we had made her at the end of all this). After the test, we were discharged and on our way home. The ride home was filled with emotions for me, as we left another bubble. I was exhausted and fragile. Arriving home was a relief!

Maya is doing great. She has been watching videos, playing doctor with her dolls and reading books. She seems unaffected by the loss of sight in her right eye and is functioning as she always had. There are many dolls and teddy bears with bandages and braces and one bear with a sick eye. Play is definitely the way by which she will make a full-recovery emotionally.

As for Robbie and I, we are exhausted at all levels, but are relieved the first part is over. In Maya’s eyes, it’s over. She is not aware of all the other aspects to this. Robbie and I will carry this burden for her gladly as we await the test results.

The most positive thing I can say about our experience at the hospital is the care we got from every single nurse and doctor. The nurses who worked with Maya were AMAZING. They were kind and gentle. I truly admire their strength for what they do every day. The team of doctors and nurses that have been and will be working with Maya are amazing individuals who have the gift of making us feel like Maya is their one and only patient. They are compassionate, loving and strong and Maya loves them. They saved my baby’s life.

Please keep us in your thoughts, keep your candles burning and keep your hearts open. As difficult as this has been, so much love and light has come out of this situation. We remain confident that this will soon be behind us and we continue to pull our strength from our amazing daughter, our families and our friends. Your messages have moved us deeply and a scrapbook has begun to celebrate all the wonderful things that have happened in the last week.

Thank you for reading my posts. I will continue to write as inspiration hits me. This truly is my therapy. I feel lighter after I write…it’s my way of letting things go.

Thank you again from the openness of our hearts.