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.