Life With A Side Of Autism

LIFE WITH A SIDE OF AUTISM

Monday, August 18, 2014

When The Doctor Says The Word "Tumor" And Your Child Is The One He's Talking About, The Whole World Spins

My daughter has a tumor.

Calm down, now. Breathe.

It's not as bad as it sounds....hopefully. The nurse (and the internet) reassured me that this tumor is most likely benign, and these types of tumors are found in people under 30, especially if they're younger and still growing. They'll biopsy it to be sure, of course.

Of course.

My daughter's tumor is on her femur and it may or may not be the cause of the leg pain that took us to the doctor in the first place.


So I heard the word "tumor" and the world went fuzzy and I asked the nurse to repeat herself and I carefully wrote down everything she said. The doctor had been trying to call me, she chastised. It took them two days to reach me because I hadn't updated my cell phone number.

I was sure that I had, but apparently I did that at her brother's visit, and when they update on one record, their system doesn't automatically populate any of the others in the family. My daughter has been remarkably healthy, and hasn't been to the doctor in a while.

Anyway, we were on vacation, and they finally got through to me and I hung up the phone and called my ex and filled him in, as best I could. Then I sat Anna down and explained that this was most likely no big deal and we'd just have to see what they wanted to do.

According to the doctor's notes, we were to consult an orthopedic specialist, and take it from there. I smiled. I hugged her. She was cool and I was cool and despite that first gut punch of shock, everything was going to be okay. I was feeling better.

And then the doctor called.

She called because she talked to the nurse, and the nurse was having trouble reading her notes. She missed some things. The doctor wanted to be sure we had the whole picture.

Yes, I reassured her. I'm listening. I'm writing it all down. Go ahead.

"Your daughter has a tumor on her femur," she started. "But that's not all..."

And again, the world got a little fuzzy but I made myself listen. It turns out that my daughter has previously undiagnosed spinal bifida. Luckily, she's got the mildest form - occulta - occurring in only one vertebrae that never fused properly in utero. What this means is still a bit of an unknown, hence the need for the orthopedist.

From the initial look of the x-ray, it's possible that the nerves in her spine are partially exposed. Sometimes, this type of spinal bifida requires surgery, and sometimes it's left alone. We won't know until they do more x-rays and an MRI. It's also possible that this pain in her leg is more a result of the spinal issue and not the tumor. It could be the beginning of something that could become degenerative, over time. Or not. We don't know.

And the not knowing is the part that makes you crazy, and turns the world fuzzy. But I'm trying to push that into the background, and go to work, and get the laundry done, and prep for back to school, and write my blogs and work on my book and have faith that this will all be okay.

Because it has to be okay.

This is my daughter. Part of my living, beating heart walking around outside my body, here. And she deserves to be able to run and turn cartwheels and dance and dance and dance for the rest of her entire life.

I know there are many, many children who never got a day of that. Will never get a day of that. My heart hurts just thinking about it. There are children with degenerative and chronic conditions that bring them continuous pain and their families endless heartache. I am lucky, so very lucky, that this is the worst thing I've faced with her since her emergency c-section birth, over thirteen years ago.

 But I don't feel so lucky. I feel...helpless.

And I hate it.

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