Hoping But Afraid To Hope

I promise to finish the tale of our Churchill trip soon. But all too soon, it's that time again, we leave first thing tomorrow morning for Memphis.

I believe these trips are shortening my life. It's a good thing I come from strong stock.

Some trips are easier than others and its difficult to say just why that is. Steven is doing great, but this trip has me anxious and tearful, at least when he's not around to watch. I'm a worrywart, I wish I knew how to just turn it off.

Steven's school called us last week and saw a dramatic decrease in his high-frequency hearing in both ears. Could be something as simple as wax, or something else.

After completing his third (of four) stem cell transplants, he showed a dramatic drop in his high-frequency hearing, due to permanent loss of the fine hairs in his ears from the chemo.

Since then, his hearing has held solid, until now. They promised to schedule hearing in Memphis this time, I don't know when yet.

After this visit, we have one more quarterly followup visit, in February. Then, if everything is still clear, we graduate to 6-month followups for the next 3 years, in February and August.

I don't even like to discuss this sometimes, his prognosis and progress, not because its not hopeful, but because I'm afraid to hope too much for what we all so desperately desire. Some kids win the prize and some don't, there's no rhyme or reason to it, and we've lost far too many friends to ever assume anything.

Tomorrow morning we fly to Memphis via Houston. Sometimes I think I'm being punished, for tomorrow only, around the time our flights are scheduled to land, there are thunderstorms predicted for both Houston and Memphis. Such things don't bother Steven, only me, and flying in bad weather terrifies me.

It's a short trip, MRI of his brain only, no spine or lumbar puncture this time.

So, keep us in your prayers and hold good thoughts for us and I'll update again after we're in Memphis.

- Kathleen