The Book of Me

The worst is over. Those words are like the soothing sound of a steady rainfall on a warm summers eve. After almost two weeks of anxiety and fear of Xavier's brain surgery, I can finally relax. It is over and he is doing amazing. This almost 5 year old kid has been through more than I have with 26 years on him. And still, he smiles, laughs and plays his little heart out. Not even a week after surgeons opened him up again, removed scar tissue in the 4th ventricle of his brain and took out a vertebrae in his spine, Xavier is walking, talking and just being a kid again. This past week has been a roller coaster of emotions, but above all has once again shown me how strong my little boy is ... and how strong I can be when I have to. There were moments when I thought I couldn't do this again - spend nights at his bedside in hospital, watch him suffer and see his painful scars. But with so many amazing people around me, and the extraordinary care by doctors and nurses at McMast...

Today my mind is working against me. We are two days away from Xavier's surgery and I find myself thinking about all the what ifs. This painstaking process (and yes it's a process of digesting and accepting what we are going through) is consuming me with horrifying thoughts and vivid images of what could happen while Xavier is on the operating table...again. What if something goes wrong? What if the worst happens? My logical self says this is not worth thinking about. It will never happen. Or we'll cross that bridge when we get there. But that fear monster inside me argues... how do you know? I never thought it would be our child who got cancer. But it happened. So I need to prepare myself, so I can deal with it. (I am a control freak, can you tell?) These thoughts pass through my mind as I watch the most recent developments in the missing Mayalysian plane: how many of those passengers passed off the routine safety messages, tuned out the instructions because in th...

As our family anxiously awaits Xavier's surgery date, we are struggling with the range of emotions associated with another hospital stay. Unfortunately, the sad and most stressful part of it all is the feeling of having to rush back to work. Not because we want to, but because we have to. Even with the latest addition to Employment Insurance for parents caring for critically ill child, it is restrictive and difficult to qualify (like most programs to get money from the government). And it is only up to 55% of our wage (although I would take what I can get). Then there is Short Term Disability through work. Again, very challenging to get and the constant inference from the insurer is almost not worth the effort of applying. Plus, it is not my disability. It is my son's. I am not sick. However, I could argue the emotional toll it has on my psyche affects my productivity at work. And the last option: to use up all of my sick days, all of my vacation days an...

My little superhero will have yet another chance to show off his super strength with a second brain surgery scheduled for this month. Doctors informed us earlier this week that all of his symptoms are related to the fluid-filled cysts growing in his spinal cord. The cause: an obstruction in the flow of CSF in his head, primarily (or at least neurosurgeons suspect) in the area of his previous surgery. It has been 4 years since he was opened up and a large cancerous tumour was removed from the back of his brain. But the memories and emotions of that initial surgery still feel like it was yesterday. However, this latest news is not all bad. In fact there is a lot of positive. First and foremost, it is NOT the cancer or any regrowth of the remaining tumour tissue left on his brainstem. He is still CANCER FREE (that sounds so good to say!) Secondly, the surgery is routine. Albeit there will be an increased risk because the area has previously been operated on, but the surgeon ...

Up until about 2:30 today, I was calm. It was then that I had a conversation with the nurse from Xavier's endocrine clinic about some symptoms he has been having. For days now he has been complaining about a headache - most of them first thing in the morning. Of course my first thought is the worst, given his history, this would only be a natural reaction. Pushing that thought aside to avoid jumping to conclusions, I pondered what else could be causing him these headaches. I tested his blood sugars a couple mornings with my tester and found his sugars seemed a bit low to my standards. So, I told myself, thats all it was. Still cautious, I sent my concerns to his team of doctors at McMaster. He has an MRI tomorrow, so no worries. Until today when the nurse said his sugars were ok for a child his age and the headaches were concerning - especially since having gone back on the growth hormone. I told her we have an appointment with his endocrinologist next month: "That...