Sunday, August 22, 2010


My mother had been blind since 1964.  She learned braille and learned to cook again.  She took classes at the local college and love to read.  She would read books on tape.  She was always open for a crossword puzzle.

We'd always talk about the books she had read and I'd have to read it because she described them so wonderfully.  She would be up at all hours because she was always getting her days and nights mixed up.  So Shana, would call and they'd stay up late talking.  My mother and Shana shared a special bond.

My mother got Pneumonia in 2008 and was in the hospital for 3 weeks.  I asked her, since we were at the hospital already, if she wanted to get scanned.  She said: I've lived this long without knowing, I'd rather not know. So we didn't have her scanned.  She knew she had a Pheo but, her brother had his removed and "All Hell Broke Lose" is what she said.  So she didn't have hers removed...she was pretty good at calming herself down when she had panic attacks or heart palputations.

Upon returning home she needed physical therapy...her legs weren't working quite right, maybe from being in bed so long.  She did PT for 4-6 weeks and things started to get back to normal.

She got better...but then she started to fall.  We thought because she hadn't regained all her strength back.  She said she didn't know what happened, just that her legs gave out from beneath her.  She wasn't in pain, not dizzy...

She fell a couple more times so, we took her back to the doctor and they said she needed more physical mom didn't want to do it.

She need a wheel chair to leave the house.  She seemed ok for a while.

Earlier this year, she caught another cold.  And then her memory started to fade.  The doctor said it was early dementia.  Within weeks, she started to deteriorate. 

Her 71st birthday was on July 31, 2010.  All her children, grand children and great grand children were there.  We had bbq and cupcakes.  My mom didn't feel like eating.  She had trouble opening her gifts and she didn't talk much.  I felt like she could understand but couldn't vocalize her thoughts.  We thought maybe she had suffered a mild stroke.

We took her to the ER the next day...they scanned her and found a brain tumor.  A very large brain tumor.  It had probably been there for years.  She didn't have dementia...the brain tumor had caused the falls, the slurred speech, the dementia...everything. OMG!!!

They rushed her to another hospital.  They said she had to have surgery to relieve pressure from the swelling that the tumor was causing.

I live about 100 miles away.  I packed my two grandaughters (who were visiting) into the car and raced to the hospital...she had been sedated, she looked as though she had to work very hard to breathe.  She was restrained...they said she was pulling at her IV's. (I don't think they realized that her fingers were her eyes...and she was probably just touching/looking).  I kissed her on the forehead and said "I love you Mom...I'll be right here when you come back"...

My mother passed away during the surgery.

We were devastated...we were expecting to meet her in recovery.  The doctors camed to tell us that she had "coded" and that they were trying to resucitate.  They said they had given her 12 units of blood.  This tumor was huge and highly vascular and probably had been there for a very long time.  She was about 5 hours into the surgery when her heart stopped.  They worked on her for 20 minutes, when they came to talk to us again...they were still trying but...   I begged them to let her go.

My oldest daughter ran to find my younger daughter...she had gone to the car.  As she came to the elevator, Shana and crumbled to the floor, praying...praying so hard.

Everyone was crying..."How could it be?"...she can't be gone, we were supposed to meet her in recovery.

After a while...we were all sitting in the waiting room...not knowing what to do.  In shock, muffled cries...

The hardest thing I've ever experienced is walking out of the hospital...leaving my mother behind.  Not yet comprehending...that she was gone.

She had "IT"...VHL, damned VHL!

Here I am, three weeks later...missing her terribly.  Writing a blog about VHL, my mother and me.  Hoping that maybe our story helps another patient in some small way.

Damned VHL!

1 comment:

  1. I am so sorry.

    These VHL stories always make me teary.