Hello All

November 5, 2010

In 2003 our then 3 year old son went in for tubes and c-toma was found in his

Left ear. And so the journey began. His story is similar to all that I have read

here. Yet it's him, our baby. I would tell myself, it's not cancer, children are

dying from cancer. 100 years ago my son wouldn't survive this diagnoses. Stay

stong. Hang in. The first surgery being the most invasive. Then every summer

2004, 2005, 2006. Finally cleared of c-toma and considered to have a " safe " ear.

We then went to annual check-ups or cleaning out of debris. Fast foward to 2010.

2003-2006 really seems like a blur, I can barely recall. We have moved, we have

switched insurance. Time for a new ENT. Call the GP he recomends. Go meet new

DR. File is two inches thick, and a map to the inside of my son's ear. This Dr.

is concerned, seems like a lot of debris...could be return of c-toma. Noooo.

Hang on. Roller coaster starts here. Waves of emotion. I just wanted to forget.

ENT orders a ct scan. Wants the boy now 11 to see a specialist. Son is shaken.

HATES Dr.'s looking, touching, talking about his " bionical " ear. We meet new Dr.

Nice. He's not as concerned, after our visit, he stated not likely c-toma to

return after 4 years. (whew) But there are some things that need to be taken

care of. " call my office, talk to kathy. Give her this code. L mod rad mastiod,

ocr cartliage. Set up surgery. No rush,but soon. " sigh, BTW my son said, " he

likes this Dr, He had alot of hair on his chest. "

Thehardest part is the swimming issue. He just wants to dive into the water and

swim.

The questions from other kids about his ear. I think we all would like to

pretend this wasn't an issue, then someone brings it up just as we forget about

it.

Regret: I wish I would of kept a journal, blog, or something, that I could look

back on a remember exactly.

I made my son pinky swear he would Never. EVER. neglet his ear. If I am gone, or

he's on his own, he will be on his own....someday.

C-toma is a journey. It's lifelong, it's a part of you. But don't let it define

you.

If I was with you...I'd give you a big hug. Take care of yourself.

Theresa

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