BS: Positive energy request

Subject: BS: Positive energy request
From: Dharmabum
Date: 23 Feb 10 - 09:24 AM

I've also posted this above the line in the "Singing helps heal the brain" thread.
I hope that's ok.
Any positive healing energy/thoughts you may have to send our way would be greatly appreciated;

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.

Subject: RE: BS: Positive energy request
From: kendall
Date: 23 Feb 10 - 09:33 AM

Jeez man, dont drag this shit around, share it. I feel awful at this news.
Ever wonder how those insurance company and medical bastards sleep at night allowing children to just fade away?

Subject: RE: BS: Positive energy request
From: gnu
Date: 23 Feb 10 - 10:04 AM

Ts&Ps. Sniff...

Subject: RE: BS: Positive energy request
From: katlaughing
Date: 23 Feb 10 - 10:15 AM

I am so glad that you told us so we may help. I didn't say anything last year when I was going through some stuff, but was finally asked why I didn't ask my friends for help. Well, like you, I finally did and was so grateful for how kind and helpful Mudcatters have been.

Good for you for being such a good advocate for her and I will be sending out thanks givings from Colorado that all is well with Shalisa (such a pretty name!)

Love, hugs and plenty of good thoughts!

kat

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 23 Feb 10 - 10:19 AM

That is a devastataing diagnosis, Ron. I am more concerned for you than Shalisa. You have a long hard road ahead of you.
Deep breaths and one day at a time.
I will keep Shalisa and you in my prayers.
Stay in touch. Many here have experience with ill children and long term illnesses. They will listen, share, not judge, and support you.
Mary

Subject: RE: BS: Positive energy request
From: jacqui.c
Date: 23 Feb 10 - 10:33 AM

Positive energy coming from here Ron. I know, as well as anyone, how supportive the Mudcat crowd can be. We will walk with you all the way, even if we can't give any practical advice.

Subject: RE: BS: Positive energy request
From: Mrrzy
Date: 23 Feb 10 - 10:57 AM

Man, that's a nasty mouthful, poor all of you! Mudcat has been very good to me in times of trouble, I hope we can be as good to you!

Does anybody say anything about genetics in your medical helper people?

Subject: RE: BS: Positive energy request
From: Janie
Date: 23 Feb 10 - 11:20 AM

Jeez Louise! How devestating, and how bewildering to all of you! Streams of postive energy and thoughts going to you, your daughter, and all of your family.

Janie

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 23 Feb 10 - 12:04 PM

Thanks so much everyone.

While I have to admit I don't check in at the "cat" near as often as I used to.
I've never forgotten what a supportive bunch y'all are around here.

Ron.

Subject: RE: BS: Positive energy request
From: Dave the Gnome
Date: 24 Feb 10 - 06:26 AM

I'm not surprised you don't Ron! Best wishes and as many possitive vibes as you like from this little man and his fishing rod:-)

DeG

Subject: RE: BS: Positive energy request
From: catspaw49
Date: 24 Feb 10 - 06:34 AM

Ron, I don't know what to say that hasn't been said but you have all my best thoughts coming your way. I'm glad you unloaded here but I wish you'd done it sooner. There may be nothing we can do but listen and offer love and support but you can't be carrying that baggage around inside of you.

You've been a part of this community for a long time and you know we're here for whatever it may be worth to you. That has meant a lot to me in the past............We love ya' and we're here......simple as that.

Spaw

Subject: RE: BS: Positive energy request
From: mouldy
Date: 24 Feb 10 - 06:52 AM

Wow! What a lot you have carried on your own already!
I'm glad Shalisa is doing as well as she is, and I hope our love and good thoughts will help her on her way to whatever her life is meant to be in the future, and support you as you journey along with her.

Andrea

Subject: RE: BS: Positive energy request
From: AllisonA(Animaterra)
Date: 24 Feb 10 - 06:52 AM

Pulling for you here, dear Dharmabum.

A question about the insurance co- do you have a doctor or someone at the hospital who can go to bat for you to argue with them? When my daughter needed elective jaw surgery to correct some birth anomalies, our ins. co denied it saying it was cosmetic. But our surgeon kept at them, wrote tons of letters, until they gave it.
It seems to me that this situation is much more critical, and what you need is an advocate in the system who can fight for you.

Whatever the case, you have my love and support and positive thoughts.

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 24 Feb 10 - 07:22 AM

Ya know,I'd been so busy setting up a support network for my kid,I forgot to check my own dipstick & didn't realize the idiot light was flashing!
Y'all are part of that network.
We thank you.

As my exausted body hit the sack last night,I could hear Shalisa strumming the guitar in the next room.
It was the first time in a while I slept a straight six hours.

Ron.

Alright Spaw,you can release the dipstick jokes now.

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 24 Feb 10 - 07:50 AM

Hi Animaterra,
The health insurance has been an issue.
But we've jumped through the appropriate hoops & seem to be on the right track for now.
That meant starting over with a new neurology team & a new hospital.
We wanted a second opinion anyway,so that's worked to our advantage.

She's also applied for & gotten some financial aid,which took a big chunk out of her initial medical bill.

As far as the docs going to bat for her against the big boys,that remains to be seen how far they'll go.

Ron.

Subject: RE: BS: Positive energy request
From: Bobert
Date: 24 Feb 10 - 08:17 AM

First of all, just know that Shalisa is im my thoughts and prayers...

Secondly, a couple years back I had some neurological damage from an over anxious andpoorly trained massage thearapist... I finally saw a wonderful nuerologist in NoVa who explained that neurological damage/diesease, if it is to improve, does so on a different time level as other stuff... In other words, it's slow...

Here's hopin' that, though slow, that your daughter improves with time and that the "new normal" is not that far from the old normal...

Bobert

Subject: RE: BS: Positive energy request
From: Lizzie Cornish 1
Date: 24 Feb 10 - 08:55 AM

Sending you and Shalisa much love and good thoughts, Ron. She sure is lucky to have you as her Dad. xx

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 24 Feb 10 - 09:02 AM

The idiot light on your dipstick was flashing?????Is that some S&M thing?
Some new studies show that music and singing force different parts of the brain to reconnect and work. Can you get Shalisa to sing or hum along to her guitar?
One day at a time, Ron. Take care of yourself along the way.
Mary

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 24 Feb 10 - 09:02 AM

Bobert,
Thanks Man.

Yea,I know about slow.
I've been living with MS for 26 years.
Like the song says,"I'm built for comfort,not for speed".

But living with this crap has taught me something;
You can burn yourself out fighting your situation,or you can learn how to "Live Well" with your disease.

I've also learned the the human body has the capability to heal itself in it's own way.
That includes re routing nerve signals.

Seems my task at hand is to pass on that knowledge to my kid.

Later,Ron.

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 24 Feb 10 - 09:07 AM

Hey Sins..............

"The idiot light on your dipstick was flashing?????Is that some S&M thing?"

How else could I find it in the dark?;)

Subject: RE: BS: Positive energy request
From: kendall
Date: 24 Feb 10 - 09:12 AM

This latest bout with the "thousand natural shocks that flesh is heir to" has convinced me that positive energy can only be generated inside oneself, but love from outside sure as hell helps to get it going. Here, I have some to spare now that the mudcat has given me so much these past few days.

Subject: RE: BS: Positive energy request
From: olddude
Date: 24 Feb 10 - 09:59 AM

My thoughts and prayers with your daughter and your family

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 24 Feb 10 - 10:02 AM

LOL I had to ask!

Subject: RE: BS: Positive energy request
From: Maryrrf
Date: 24 Feb 10 - 10:19 AM

Thoughts and prayers are with you and your daughter!

Subject: RE: BS: Positive energy request
From: LilyFestre
Date: 24 Feb 10 - 10:53 AM

Kendall said, "This latest bout with the "thousand natural shocks that flesh is heir to" has convinced me that positive energy can only be generated inside oneself, but love from outside sure as hell helps to get it going"

AMEN.

Lots of prayers and positive thoughts my friend.

Michelle

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 24 Feb 10 - 05:25 PM

It seems like there are quite a few good folks here at the Mudcat,who're going through some tough times lately.

Now,I checked in here the other day,after I had slid off of the radar for awhile.
No particular reason,just where life had led me for a time.

I've only met a few of you in person,& even fewer have ever met my daughter.
Still,it took less than ten minutes for you to respond to my post with your love & support.
WOW!If this ain't a family,I don't know what is!
You guys are too much.
Especially those of you who are dealing with your own "Natural Shocks".
We're pulling for you too.

    Ron.

Subject: RE: BS: Positive energy request
From: Sandra in Sydney
Date: 25 Feb 10 - 01:17 AM

the other thread

sandra (sending more good wishes)

Subject: RE: BS: Positive energy request
From: Genie
Date: 25 Feb 10 - 02:14 AM

This really is a lot for you and your family to carry, Ron.   I am sending positive visualizations and energy your way. I hope our care and concern can speed Shalisa's getting to that "new normal" and help ease the stress of all this.

{{{{{{{{{{Hugs}}}}}}}}}}

Genie

Subject: RE: BS: Positive energy request
From: GUEST,Regular guest poster.
Date: 25 Feb 10 - 02:27 AM

One of my children is facing something similar. Believe me when I tell you you have my deepest empathy and sympathy. And you'll be in my prayers, Ron, both of you.

Subject: RE: BS: Positive energy request
From: open mike
Date: 25 Feb 10 - 02:39 AM

THANKS FOR SHARING THIS WITH US...what a scary thing this is..
i am so glad to hear that you have a musical connection with your girl.
I have a daughter about that same age, and am sending you healing wishes for the best outcome. keep the music going, and keep us posted.

Subject: RE: BS: Positive energy request
From: KT
Date: 25 Feb 10 - 03:52 AM

Just on the cat for the first time today, and just now finding this. I'm joining those who've offered good thoughts and prayers for you and your daughter, Ron. Holding you both in light~KT

Subject: RE: BS: Positive energy request
From: Morticia
Date: 25 Feb 10 - 03:55 AM

You've got it from me

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 25 Feb 10 - 10:19 AM

I've printed out your responses & Shalisa's been reading them.
To say that she's been touched by each & every one of them would be an understatement.

At this time,even the daily routine tasks,from getting dressed,making breakfast,to doing laundry,are all considered part of her therapy. Though she does need someone to remind her of the task at hand right now.

You know how we all from time to time,will walk into a room & forget what it was that we were looking for,or what we were there to do?
Well,that's Shalisa's life is right now.
And repetition is a very important part in the retraining of her brain.

Shalisa's reading your posts,& re reading them,over & over.
Because she can't remember reading them the first time.

Again,repetition = good.

The thing that's important for each of you to remember,is that every time she reads one of your notes,it triggers an emotional response in her.
I have to believe that every one of those "emotional responses" puts her that much closer to knocking another piece of the puzzle back into place.

So,to each of you, I want you to know,(and I wish I could word this more eloquently)there is a very tangible result from your actions.

We're getting hammered with yet another snowstorm today.
Good day for Shalisa & I to play some tunes.

Later,Ron.

Subject: RE: BS: Positive energy request
From: Stilly River Sage
Date: 25 Feb 10 - 11:17 AM

Ron,

We had a shock about 4 years ago when my daughter was hospitalized and needed a couple of units transfusion. The nurse in the ER commented that "they'll probably need to call an oncologist." That sent us into a true tailspin. We learned in the next couple of days that all hematologists are also oncologists, though not all oncologists are hematologists. That little omission, when the nurse first uttered the word "oncologist," gave us a couple of really bad days and nights. The nurse should have been more careful in how she termed that remark, because it was like a sentence of death before a diagnosis had even been reached.

My daughter's problem was diagnosed, a surgery performed to deal with it. Choices were made, but it took a lot of research on my part to help us decide what needed to be done.

If you come up with technical terms that you need some help with, I work in a library with a nursing school and a lot of subscription medical databases. If you need any research, send a PM and give me the term and I can probably send you PDFs of articles or citations for you to read* or share with your doctors.

*You can scare yourself shitless reading some of these without a medical background, so I'm not offering this casually. If you think any of these searches would help, let me know, but I understand if it is too much information. And before you send me a PM, run those key words through the database at National Institutes of Health (NIH). And research receiving federal funding must by law be published. And you are entitled to take a look at this along with your doctors.

Good luck. I hope the Mudcat community can help you in many ways.

SRS

Subject: RE: BS: Positive energy request
From: GUEST,Regular guest poster.
Date: 26 Feb 10 - 02:53 AM

Dear Shalisa,

I want you to know that my daughter went through and still goes through some of what you are having to deal with. She has the best memory of anyone I know. I'm pretty old now, and sometimes I forget what I went looking for because by the time I get there to get whatever is, my memory of it is gone. Drives me "mucho loco" sometimes.

I am happy that you and your dad get to do so much together. I'll tell you right now, he loves you and really admires you for the great effort you are making. Please, be proud of yourself. We have an expression we use in firefighting: NO ONE is unimportant on a fire scene. Well, no effort you make is wasted. We all think you're pretty wonderful. Keep believing and keep trying.

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 26 Feb 10 - 08:13 AM

I just whish I had the time to PM each of you.

For now just know we're grateful beyond words for your support.

Ron.

Subject: RE: BS: Positive energy request
From: Sandra in Sydney
Date: 26 Feb 10 - 08:30 AM

Gidday Shalisa

I hope you & your Dad have a great musical day

sandra

Subject: RE: BS: Positive energy request
From: GUEST,Regular guest poster
Date: 26 Feb 10 - 03:06 PM

Hi, Shalisa. I wanted you to know that I'll be out of touch because I'm moving to a different province in Canada. I will be keeping you in my prayers. By the way, I sent a small present to you. It is in today's mail--but knowing the post office as I do it could take about ten days to reach you. I wanted to let you know that all of us on Mudcat are really 'pulling' for you. If you get a chance in the next while, would you be kind enough to tell us what kind of music you like?

I'll be back in touch as soon as I can.

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 26 Feb 10 - 03:19 PM

Shalisa,
When you feel up to it come take a room at the Mudcat Recovery Ward - a fairly zany place formally known as the Neil Young Center For The Terminally Screwed.
It is our Cyber Place for recovering from real world illnesses. Just watch out for Nurse Ratched, last seen with a needle the size of a harpoon and an attitude to match. Let me know your favorite colors and I will design a room there for you.
Mary

Subject: RE: BS: Positive energy request
From: VirginiaTam
Date: 26 Feb 10 - 03:22 PM

I don't know you Dharmabum and as I haven't been on Mudcat all that long I guess not surprising.

But as a Mom who has gone through the ordeal of an ailing daughter with whom I used to sing, you have my understanding and best wishes.

As much positive energy (which is perpetually refilled here on Mudcat) as I have to give are yours and Shalisa's.

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 26 Feb 10 - 03:23 PM

Entrance to the Recovery Ward:
thread.cfm?threadid=126570&messages=286#2850108

Subject: RE: BS: Positive energy request
From: GUEST,Regular guest poster.
Date: 27 Feb 10 - 02:56 PM

Hi, Shalisa and Ron. Getting ready for the train--I love trains to travel by--and will be on-board in six hours. I will write to you both later in the coming week. I hope your weekend is wonderful and that the music is cookin'. Keep well both of you.

Later.

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 01 Mar 10 - 11:01 AM

My computer is infected and refuses to produce anything but porn sites. Posting from work just to see how things are going.
Mary

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 01 Mar 10 - 06:24 PM

Hi Sins,Sorry about your computer issues.

Shalisa had her second lumbar puncture (spinal tap)today.

All went well, She only experienced a small amount of discomfort.

Resting well now.

Ron.

Subject: RE: BS: Positive energy request
From: Jeri
Date: 01 Mar 10 - 06:48 PM

Ron, I'm sorry about this and I hope for the best for Shalisa.

I still have the lovely wood portrait of Rick that you made, and I miss seeing you at Old Songs. You're one of the good ones, and I'd love for good things to happen to you and yours.

Jeri

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 01 Mar 10 - 08:05 PM

Thanks Jeri,
I hope to get back to O.S. one of these days.
It'd be nice to see you again also.

Ron.

Subject: RE: BS: Positive energy request
From: Sandra in Sydney
Date: 02 Mar 10 - 02:23 AM

sending more good wishes to Shalisa

sandra

Subject: RE: BS: Positive energy request
From: AllisonA(Animaterra)
Date: 02 Mar 10 - 06:42 AM

Me, too...

Subject: RE: BS: Positive energy request
From: GUEST,kendall
Date: 02 Mar 10 - 07:43 AM

Ron, I too hope to see you at Old Songs again. Having you camped nearby was a pleasure.

Subject: RE: BS: Positive energy request
From: GUEST,Regular guest poster
Date: 03 Mar 10 - 02:17 AM

Well, I'm in Quebec. Now, I'm goin' ta sleep. Hope you're well.

Me.