The Monster

We are very excited that on March 1 we have scans to see if Grant has any "active disease." If he doesn't he will go off treatment for the first time in 18 months. This is very good news, but VERY scary. He has developed new lesions twice while on treatment. Going off treatment is like sticking your tongue out and saying "nanny nanny boo boo, come and get me" to the disease. It is very scary. We want the normal life, but we have had the "chemo net" to keep us safe all this time. I am afraid to live without it. I don't think I have ever called this thing a monster to Grant, but I may have. Two weeks ago on a Sunday morning Chad was out of town and Grant came to wake me up (someone has to!). He was coughing and standing by the bed. Our bed makes him exactly eye level standing beside the bed. He said, "the monster is here" and he touched his sternum. I said, "what monster?" He said, "The monster that was in my back is now in my front." Oh, it was a knife to the heart. I don't think it is the monster in his chest, I think it is pneumonia hanging on, but still, a 5 year old that knows he has a monster in him - that is heartbreaking.
I asked him yesterday if he had any hurting places he said no. I have a feeling from the day he stops treatment, I'll be asking that question much more. Imagine, a day without any medicine. NOTHING. That is scary! No antibiotic, no chemo, no steroid, no Zofran, NOTHING. I am not ready.
I have been praying that I would be ready for this day when it arrived. I am trusting that this readiness will come in the next few weeks because I am surely NOT feeling it now. YIkes.