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's not soon enough. We need to see him this week."
My heart rate increased and I could feel my body warm up and my mind go to dangerous places.
This is our life. Fear.
I hate to cry wolf everytime Xavier has a symptom of any kind. But we just never know. It's an ongoing battle to try to live normal. Sure, the tumour is gone, the cancer treatments or over, but that experience has scarred me for life.
Now there's all the therapy, the treatment required to treat the effects of the initial treatments.
I am worried. I don't want to be worried, because there is a good chance it could be some simple explanation and an easy fix. But what if it's not?
It was just 4 months ago this same scary feeling fell over me. That's when doctors needed a closer look at his head and spine after his initial routine MRI. Turns out what they thought might be another tumour was the Syrinx cysts in his spinal cord. Still concerning and something to be followed, but we had no reason to act at that time.
Now here we are again. I just want to be free of this pain, this fear and worry. I want my little guy to not have so many doctors appointment, pokes and therapy. I don't want to have to tell him he had cancer.
And it's times like these, when I see a symptom present, that I struggle with how to handle it. On one hand, I want to rush him to the doctors and get it assessed ASAP. I am troubled with the guilt of not finding out about his brain tumour for months. What if I had only done this or done that sooner... I don't want to wait, but I also don't want to be a hypochondriac.
I will go home tonight and play with my kids and pretend like there is nothing wrong. But inside, I will be screaming.
This is my life now. But deep down I know whatever happens, it's nothing we can't deal with.