Good morning! So, Sydney just came down stairs with a bloody nose. She was also complaining that she barely slept all night. What is the first thing that goes through my mind?
What are her platelets? Is neuroblastoma somehow chewing them up?
Boy am I mental...
It always amazes me how quickly my mind can go back there - back to treatment, back to the worry, and back to nightmare. While logically I know her bloody nose is probably due to the lack of humidity going on in our house and that, combined with her stuffiness (and probably some probing by her finger - eeew!), is probably the source of her problem. Yet, the first thing that comes to mind is - neuroblastoma. It happens so quickly. Before I even have a moment to think that familiar lump is back in my throat and it feels like all of the air has left me.
After 7 years...
Now, don't get me wrong. I don't walk around everyday with the monster sitting on my shoulder. I still fear it. It is always there. But, life is good. While I still can't say that there is a day that I do not think about neuroblastoma, I think that is largely due to my purpose and the fact that everyday I am talking to another parent about the disease.
Neuroblastoma doesn't cripple us. It is a part of our lives and it always will be. There are good days. In fact, there are great days and every one of them I am thankful for. But, in that same sense, it is still there. It quietly haunts us.
After 7 years, I am beginning to wonder if that fear response will ever go away.
I doubt it.
The monster is still out there and it has touched my soul. I won't be able to truly rest until it is defeated.
Now, that is mental. And, that is me.
But, then again, that is also purpose.