The First Days

It is a strange new world when you enter a children's hospital with your teenager. Fortunately at Sick Kids the doctors and nurses help you a lot. We had two main doctors, a paediatrician and a haematologist/oncologist. Dr. Coffey and Dr. Droer respectively were in charge of Melodina's care. Nurses were very helpful and friendly. We actually ended up being cared for by one of the nurses from ward 7C more than two and a half years later when Melodina had to spend a few days in the ICU. That is the story for another blog posting.

Our first days were a a whirl of doctors explaining tests to us, more tests being done and the results of tests being explained. All our questions were answered patiently and accurately. I have never had much to do with the medical profession in my life. The few exceptions have included a hospital allowing my father to get bed sores so severe that he had to live in pain the rest of his life and my mother being treated like she didn't matter and no one explaining to us that she was dying. Both were heartbreaking.

At Sick Kids I learned to respect not only the doctors and nurses but the science that they operated under. The nurses were great. They were kind, cautious of anything to do with Melodina's health and they would take time to answer any questions. If they didn't know the answers to our inquiries they would call a doctor for us to talk to. The honesty was a great comfort. If the doctors did not know they told us they didn't know and then we discussed next steps. We were kept involved and nothing was decided before Melodina approved it. This was important beyond measure. Melodina was always mature for her age and I felt very strongly that she should be involved in her own health care decisions.

To explained how impressed I was let me say that from the very beginning all the doctors who came into Melodina's room spoke directly to her. They explained everything to her, they asked all questions of her and they made their treatment decisions with her input and her approval. Melodina was treated from the first with the dignity and respect that human beings should always be accorded. I began to see Sick Kids as an environment that not only treated children but respected them.

As a family we worked out a protocol for our own interaction with medical staff that suited everyone well for over two years. We would discuss things as a family. Indira and I would ask as many questions as we could think of and Melodina would listen to the questions and answers. Melodina would then ask any more questions and add her thoughts and decision to the mix. In this way she got health care that she understood and accepted. We all feel that because we had knowledge and input Melodina received better care than would otherwise be possible. She was a part of the analysis of her ongoing disease, symptoms of which seemed to change often. Because she had input and because she was respected Melodina bought into her treatment plan 100%. I will always be grateful to the medical staff at Sick Kids who treated a teenager with such dignity.

And so the days went by, tests and more tests. Discussions and more discussions. We knew they were testing for cancer; leukemia, lymphoma and others. We honestly didn't think that Melodina had cancer. We thought that she contracted a virus in Chilli while training and that because she almost never took a break she couldn't fight the virus - you know a terrible flu or something like that. We discovered that there are thousands of viruses in the world most of which cannot be identified by a hospital lab let alone treated. For most of us this doesn't matter because we successfully fight the viruses. In Melodina's case her immune system was compromised and she couldn't fight the disease, whatever it was.

We also weren't aware that viruses can cause or trigger cancer. And so the tests went on. The discussions went on and while we all felt incredible stress the doctors and nurses treated us well and included us in everything. This was health care the way health care should be.