Fighting for my mother’s life..

The last few days have been indeed difficult.  I have managed to keep my mother in the dark about the truth of how sick she really is.  The problem is that she feels absolutely normal.  She looks just fine.  But she is on the edge of death.  To make things worse, the doctors have zero idea what the problem is truly.

My mother is no longer making her own platelets.  She is destroying any that are given to her.  They replaced her blood with new blood, and in one day she chewed through over half the platelets that were given to her.  The original diagnosis of ITP is no longer valid.  She has not responded to any of the treatment.  She now has issues with her bone marrow and that too is sick.  So, we are talking that it is either an auto immune problem, or a viral infection of some type that is really rare and isn’t showing up on the normal tests.

Problem is that the doctors have not been very good at communicating with me.  I hadn’t been able to speak to anyone in 3 days.  Her platelets had gone down all the way under 2,000.  (That is near death for all of you who don’t know).  There was no one available to speak to me.  I left message after message.  Nada.

Finally yesterday, my brother Larry went down there for me and made it happen.  He is very big and mean looking and made sure that he spoke to the right people.  Magically her doctor appeared.  I was able to speak to her on the phone.  I told her of my dissatisfaction with the situation and discussed moving her to another facility.  I’m giving this doctor one last chance. 

We are starting my mother on a type of chemotherapy today.  I agreed to it, because basically I came up with this idea over a week and a half ago.  Hopefully it will do what the steroids couldn’t with very little side effects.  It isn’t the traditional type with hair loss etc.  We are also getting a second opinion consult today.

Its difficult because my specialty is not hematology (medicine of the blood).  I am a neurology girl.  So I’m having to guess alot on stuff.  I don’t like not knowing.  I’m having to swat up quick.  I hate it that the doctor treats me like I’m retarded.  Its frustrating.

My mother realised only yesterday things are serious, but she doesn’t realise still how her life hangs in balance.  I guess I couldn’t keep her in the dark forever.  But it was nice that she was thinking that she was going to get out of the hospital in a few days and just live her life.  Her spirits were really high.  I hope by seeing her loved ones for “Mother’s Day” this weekend she feels loved.

I am leaving all of this in God’s hands.  He has a plan.  I have faith.

Song of the day - Rescue Me - Aretha Franklin

For all of my readers…. you’ll know exactly why this is the song of the day!  :)  Wishing you all a great day!

A thought for the day

My mother shared this with me many many years ago… thought it was appropriate today…

“If you can keep your head about you, when all around you are losing theirs, it simply means you don’t understand the true situation!”

This should be interesting..

Well folks, my whole family will be here for the weekend.  My younger brother is flying in tomorrow morning with his wife Christel, and my chosen sister Annette is flying in tomorrow night.  They are all staying at my house along with my oldest brother Larry and his daughter Alex.  This will be the first time in YEARS we have all been under the same roof for more than a couple of hours.  It should be interesting to say the least.

My mother finally has a clue as to her health situation being bad.  She still doesn’t understand HOW bad she is, but I think she’s getting the hint.  She’s going to be receiving chemotherapy tomorrow.  We don’t really know the actual cause of what is going on.  It could either be viral, or auto immune.  What ever it is, its very unusual in the way it is presenting itself, and resistant to all of the usual treatments so far.

Pray that my brothers are on their best behavior and they don’t wear me out this weekend.  I know Annette will be helpful (if she doesn’t get food poisoning this time).  I hope that having everyone here will make my mother smile for Mother’s day. 

I am absolutely exhausted.  I just hope I can make it through all of this.  I am really starting to hurt.  My body is warning me that it can’t be pushed too much further. 

It will be an interesting weekend for sure….

 

Song of the day - Jonas Brothers - Hold on

I asked my niece what is a song of inspiration for her.  She suggested this one.  Sounds pretty good to me…

Hold On lyrics

We don’t have time left to regret
It will take more than common sense
So stop your wondering take a stand
Theres more to life than just to live

Cause an empty room can be so loud
Its too many tears to drown them out
So hold on, hold on, hold on, hold on

One single smile a helping hand
Its not that hard to be a friend
So don’t give up stand ’til the end
Theres more to life than just to live

Cause an empty room can be so loud
Its too many tears to drown them out
So hold on, hold on, hold on, hold on

When you love someone
And they break your heart
don’t give up on love
Have faith, restart
Just hold on, hold on, hold on, hold on

When it falls apart
And your feeling lost
All your hope is gone
don’t forget to hold on, hold on

Cause an empty room can be so loud
Its too many tears to drown them out
So hold on, hold on, hold on, hold on

When you love someone
And they break your heart
don’t give up on love
Have faith, restart
Just hold on, hold on

Cause an empty room can be so loud
Its too many tears to drown them out
So hold on, hold on, hold on, hold on

When you love someone
And they break your heart
don’t give up on love
Have faith, restart
Just hold on, hold on, hold on, hold on

 

My how times have changed - dating teen style today…

My little 13 year old niece Alex is staying with me this week.  Poor little thing is pretty bummed out at the moment.  Apparently her little “Boyfriend” that she has been “going around” with “kicked her to the curb” last Friday via text.

Now, being as strict as I am with her, you might wonder why it is that I allow her to have a “boyfriend”.  Well, its because it isn’t a “boyfriend” of our understanding.  Their relationship is 100% via text! LOL!  They see each other at school.  They get a 15 minute break, and a 45 minute lunch and that’s it.  They live far apart, so they do not see each other after school at all.  Alex goes to a special charter school and so none of her school friends live close or socialise normally.

It has been an interesting life lesson for her.  The boy texted her to break-up, but didn’t say why.  A couple of days later, he told her that he was now with a new girl.  He and Alex continued to text back and forth like crazy.  I said, “Honey, you should not text him if he belongs to someone else”.  Just leave him alone.  See if he texts you.  So today she sat all day.  Nothing.  Not one text from him.  I felt bad for her, but it was a good lesson.

I told her that boys don’t like to be chased.  That you have to have enough respect for yourself to let them do the calling.  You aren’t desperate.  Wipe your feet and move on.  Besides, if he is disrespectful enough to already be “seeing” one of your girlfriends, how great is he anyway?

I think that we should be more open with our daughters about the rules of relationships.  I want Alex to have self respect.  I don’t want her to feel like she has to have a boy to feel self-worth.  I want her to know that it is better to be alone than to be with the wrong person.  I want her to have respect for her soul, and respect for her body.  Hopefully, that will save her alot of pain and heartache in the future. 

Its a difficult time.  I remember being 13.  Alot of confusing things happening right now.  Things have changed alot since I was that age.  Kids are under more pressure to grow up, have sex and do other things than they were when I was her age.  I guess knowledge in this case and being open is my only chance to combat this.  Give her the tools she needs to handle these situations and just hope and pray for the best.

The internet and children…teaching safety

Having a 13 year old niece that I help to raise, I am very conscious of what she is exposed to on the Internet.  She actually owns 2 laptops, but BOTH are monitored by me personally.  Both are locked down by parental controls.  She does not have unsupervised access at any time.

Years ago, I did some private tutoring for American women in my American women’s club in the UK.  I would fix their computers and help them get online.  I also would place parental controls on for their children.  Many parents asked me why it was that I felt this was essential even with children as old as 15. 

My reply was:  “Giving a child free reign to the internet is like taking your child and dropping them off in a big city and telling them to have a good time without any supervision, protection, or guidance.  It is THAT dangerous.”

When discussing this with my niece who was 12 years old when I gave her the first laptop, she was obviously unhappy with the idea that her computer would be locked down.  I got real with her.  I told her how dangerous the Internet was.  I offered to show her myself exactly what was out there as far as pictures and gross things to be seen.  From Porn, to other types of abuse.  I also explained to her about men pretending to be children to lure real children from the safety of their homes.  Once she understood that this really wasn’t something that SHE wanted to deal with, she was perfectly happy to have the controls placed.  I also told her that with experience and knowledge and age I would need to guide her less and less, like everything else in life. 

I am very lucky with my niece.  She’s a very good kid.  She’s responsible and wise for her age.  You can reason with her as long as you explain the situation to her in a reasonable fashion.  We have that trust.

I do not allow her to have a myspace account.  I don’t allow her to “chat” or have an IM account to talk with her friends.  She does have an IM account, but I limit who she speaks to.  She is not allowed to add anyone without approval.  I have to know them first.  I don’t allow her to post her pictures on the net, or give out any personal information.  She’s shown an interest in having a blog, but I am hesitant to allow it as I don’t live with her regularly and my control over its content wouldn’t be absolute.  Who knows who she could come in contact with.  For now, I don’t feel that it is safe.

If she decides to blog, I will add her as a guest blogger on my account.  That at least will give me a little more control.  We’ll see. 

There are so many pressures and stresses out there these days for children to face.  So many dangers.  Whilst I believe in preparing my niece for the world, and not filling her with fear, I also don’t feel she is ready to simply be thrown into the deep end.  I wouldn’t leave her alone in a big city…. why would I leave her alone here???

Song of the day - American Pie - Don Mclean

This song means something just a little bit different to all those who listen.  If you ask people what it means, they will have their own version.  Still, when I listen to it, its strangely uplifting although melancholy at the same time.  Strange.

A long, long time ago…
I can still remember
How that music used to make me smile.
And I knew if I had my chance
That I could make those people dance
And, maybe, they�d be happy for a while.

But february made me shiver
With every paper I�d deliver.
Bad news on the doorstep;
I couldn�t take one more step.

I can�t remember if I cried
When I read about his widowed bride,
But something touched me deep inside
The day the music died.

So bye-bye, miss american pie.
Drove my chevy to the levee,
But the levee was dry.
And them good old boys were drinkin� whiskey and rye
Singin�, “this�ll be the day that I die.
“this�ll be the day that I die.”

Did you write the book of love,
And do you have faith in God above,
If the Bible tells you so?
Do you believe in rock �n roll,
Can music save your mortal soul,
And can you teach me how to dance real slow?

Well, I know that you�re in love with him
`cause I saw you dancin� in the gym.
You both kicked off your shoes.
Man, I dig those rhythm and blues.

I was a lonely teenage broncin� buck
With a pink carnation and a pickup truck,
But I knew I was out of luck
The day the music died.

I started singin�,
“bye-bye, miss american pie.”
Drove my chevy to the levee,
But the levee was dry.
Them good old boys were drinkin� whiskey and rye
And singin�, “this�ll be the day that I die.
“this�ll be the day that I die.”

Now for ten years we�ve been on our own
And moss grows fat on a rollin� stone,
But that�s not how it used to be.
When the jester sang for the king and queen,
In a coat he borrowed from james dean
And a voice that came from you and me,

Oh, and while the king was looking down,
The jester stole his thorny crown.
The courtroom was adjourned;
No verdict was returned.
And while lennon read a book of marx,
The quartet practiced in the park,
And we sang dirges in the dark
The day the music died.

We were singing,
“bye-bye, miss american pie.”
Drove my chevy to the levee,
But the levee was dry.
Them good old boys were drinkin� whiskey and rye
And singin�, “this�ll be the day that I die.
“this�ll be the day that I die.”

Helter skelter in a summer swelter.
The birds flew off with a fallout shelter,
Eight miles high and falling fast.
It landed foul on the grass.
The players tried for a forward pass,
With the jester on the sidelines in a cast.

Now the half-time air was sweet perfume
While the sergeants played a marching tune.
We all got up to dance,
Oh, but we never got the chance!
`cause the players tried to take the field;
The marching band refused to yield.
Do you recall what was revealed
The day the music died?

We started singing,
“bye-bye, miss american pie.”
Drove my chevy to the levee,
But the levee was dry.
Them good old boys were drinkin� whiskey and rye
And singin�, “this�ll be the day that I die.
“this�ll be the day that I die.”

Oh, and there we were all in one place,
A generation lost in space
With no time left to start again.
So come on: jack be nimble, jack be quick!
Jack flash sat on a candlestick
Cause fire is the devil�s only friend.

Oh, and as I watched him on the stage
My hands were clenched in fists of rage.
No angel born in hell
Could break that satan�s spell.
And as the flames climbed high into the night
To light the sacrificial rite,
I saw satan laughing with delight
The day the music died

He was singing,
“bye-bye, miss american pie.”
Drove my chevy to the levee,
But the levee was dry.
Them good old boys were drinkin� whiskey and rye
And singin�, “this�ll be the day that I die.
“this�ll be the day that I die.”

I met a girl who sang the blues
And I asked her for some happy news,
But she just smiled and turned away.
I went down to the sacred store
Where I�d heard the music years before,
But the man there said the music wouldn�t play.

And in the streets: the children screamed,
The lovers cried, and the poets dreamed.
But not a word was spoken;
The church bells all were broken.
And the three men I admire most:
The father, son, and the holy ghost,
They caught the last train for the coast
The day the music died.

And they were singing,
“bye-bye, miss american pie.”
Drove my chevy to the levee,
But the levee was dry.
And them good old boys were drinkin� whiskey and rye
Singin�, “this�ll be the day that I die.
“this�ll be the day that I die.”

They were singing,
“bye-bye, miss american pie.”
Drove my chevy to the levee,
But the levee was dry.
Them good old boys were drinkin� whiskey and rye
Singin�, “this�ll be the day that I die.”

A Picture of Miley Cyrus through the eyes of a 13 year old..

I am going to do something a little different today.  I am going to turn my blog over to my 13 year old niece Alex.  She has alot to say about Miley Cyrus and her recent pictures and the controversy that has been caused.  Maybe you will agree with her point of view, maybe you won’t.  At least she has one.

Well for starters, I love Disney Channel! I watch it whenever I can. Hannah Montana is one of my favorite shows. Recently, I heard about the pictures she took and I think that she is too young to be doing things like that. I want you to think about them and see if you think people are making too big of a deal over it or if you agree with me. I think that the pictures are really inappropriate and that she should have done something less revealing. If you think about it … alot of people watch Hannah Montana and most of the viewers are young. Most girls say they want to be just like her. To tell you the truth I said that before, and now I don’t feel the same. Now think to yourself… do you want your child to do things like that and want them to think taking pictures like that is ok?  I on the other hand think that she needs to be more responsible. There are little kids watching her and I think I have lost a lot of respect for her but I think she just needs to think about what she does before she does it. I really like Miley and think she is really cool. I will continue to watch Hannah Montana but I just wanted to make my point clear to all the people that agree or disagree with me. You can say it is harsh but you have to think about it from my point of view  and just think about it. I personally think she needs to think things through. I have asked some of my peers what they thought about the pictures and they said that people are making a bigger deal than what it is. I think it is a HUGE deal. Some people think about the serious affects of this and some people don’t. I just want you to think about it. I really think this is something you want to talk to your kids about and let them know that those pictures were unnecessary.

Well, there you go!  I did not help her in any way writing this post, or help her to formulate her opinion or argument on the subject.  She brought the subject up to me as we were out at the store today and asked me to blog about it.  She was so passionate about it, feeling that it was so wrong, I felt that it was a good idea to give her the opportunity to express it herself instead of me doing it for her.

I’m sure she would like to hear back from you all your opinions.  It will give her a good opportunity to get feedback. 

Song of the day - Carry on your wayward son - Kansas

This is such a powerful song.  I woke up this morning with this song in my mind.  I don’t know why.  I guess someone out there needs to hear it.

{Refrain
Carry on my wayward son
There’ll be peace when you are done
Lay your weary head to rest
Don’t you cry no more

Once I rose above the noise and confusion
Just to get a glimpse beyond this illusion
I was soaring ever higher
But I flew too high

Though my eyes could see I still was a blind man
Though my mind could think I still was a mad man
I hear the voices when I’m dreaming
I can hear them say

{Refrain

Masquerading as a man with a reason
My charade is the event of the season
And if I claim to be a wise man, well
It surely means that I don’t know

On a stormy sea of moving emotion
Tossed about I’m like a ship on the ocean
I set a course for winds of fortune
But I hear the voices say

{Refrain
No!

Carry on, you will always remember
Carry on, nothing equals the splendor
The center lights around your vanity
But surely heaven waits for you

Carry on my wayward son
There’ll be peace when you are done
Lay your weary head to rest
Don’t you cry (don’t you cry no more)