I started this thread last February with this post;


Feb,23,2010,
This past Sept,my 30 year old daughter,Shalisa, was admitted to the Thomas Jefferson hospital in Philadelphia, with double vision,slurred speech,headaches,short term memory loss & dementia.
After a 10 day stay,which included numerous tests,scans and a biopsy of her brain,we were handed the diagnoses of terminal cancer.
Numbness,best describes the emotions we initially had to deal with.
Followed closely by devastation.
Ironically,my daughter was probably in the best emotional state at the time,as she had no memory of the diagnoses that the doc's had given her.
The next six hours was most likely the hardest I'd ever spent as a father.
Then,we got the call from the hospital.
They were uncertain of the cancer diagnoses,could we please bring her back to the hospital.

After an additional 5 day hospital stay & another battery of tests, we were given the diagnoses of something very rare & barely pronounceable,called,Metachromatic Leukodystrophy.

Not great,& no known cure,but not cancer.
And a slightly better prognoses in adults than in children.

At our last meeting with the neurology team at Thomas Jefferson ,we were told that they were again not 100% certain with the diagnoses,but her insurance would not cover further testing.
The best diagnoses they would commit to was a form of Leukodystrophy that had caused a demylinization (exposed nerves) in a large part of her brain.
This was late Oct.

We've since started seeing the neurology staff at the University Hospital in Philadelphia,& new testing has begun. (Hopefully,insurance will cover what needs to be done)

Shalisa is doing relatively well at this time.
Physically,she's dealing with a fair amount of fatigue & a bit of unsteadiness.
The headaches,double/blurred vision have almost completely subsided,& her speech is once again normal.
The most prominent & lingering symptom is her short term memory loss.
On a good day,Shalisa cannot retain any information for more than 5 minutes.

My daughter & I have played music together for many years.
She,as a young girl,showed a natural ability for guitar,pennywhistle,flute,keyboards.
I'm happy to say that she's retained most of her personality & quite a bit of her musical ability throughout this ordeal.
Though,some days it may be only be a 5 minute session,we're still playing together,and I have confidence we'll continue doing so for many years to come.

I've been told that recovering from brain injury is not so much about getting back to "normal",as much as it's about achieving a "new" normal.
Whatever that new state may be,I'm sure that our music,combined with all the other forms of rehabilitation we've undertaken,will be a very signifigant part in achieving that goal.
We're all very hopeful and positive about Shalis's recovery.

Please excuse the long winded post.
I've been hauling this around in my head for the past couple of months,& just needed to shake it outta there.

    Ron.


UPDATE,9,28,2010

Well,It's been a year now,since"All hell broke loose" in my family.
And,although I can't report that Shalisa's condition has improved by leaps & bounds,it doesn't appear that her condition has worsened much.

On a daily basis,Shalisa's still dealing with a lot of fatigue,frustration & forgetting.
She still hasn't regained her sense of smell or taste.
She's managed to gain a few pounds since this whole ordeal started.
Because,as she says"I can't taste anything,so now I can eat everything".
Frequently,Shalisa's brain sends a signal to her body that she's cold,& breaks out in chills,which only last a minute or so.
I like to believe that it's just a sign that her brain signals are trying out some new routes.
We keep working with her.Keeping her as busy as is tolerable for her .
A cane is being used to help her with stability.
Tho,I try to stress to her not to rely on it more than she has to.


Still playing music, despite some hand trembling,mostly pennywhistle right now,but some piano & guitar.
Shalisa is able to accompany most songs that we've played & still remembers songs from before her illness.
However,still cannot retain new pieces.
I dare say though, throughout all of this her improvisational skills may have improved.

Shalisa's managed to remain somewhat socially active,but cannot be left alone at this time.
At times,this can be a bit like caring for a child,but different.
Not unlike caring for someone with alzheimers I suppose,but most of Shalisa's personality has remained intact.

Although some days can seem pretty rough,we're all reminded that if the doc's first diagnoses had been correct,she,in all likelyhood, would've been gone by now.

Although,this road to recovery may seem endless at times,
Our destination is whatever step we're taking at the moment.

Thanks to all at the cat who've offered your support.

Ron.