To Love You - A Wordless Wordful Wednessday

Beautiful,
Beautiful,
Precious Child.
I see your face
looking back at me
In the pictures I see,
And I want to
Hold you,
hold you
And I need to
Love you, love you.

Beautiful,
Beautiful,
Precious Child.
I want to
take away your pain,
And I want to hold you,
hold you
And I need to love you,
love you.

Do you know
The tears that fall?
How I want to make things
okay?
How I need to
Love you,

darling

Beautiful,

beautiful
Precious Child

Copyright Alexandra Mikaela 2008 ALL RIGHTS RESERVED (seriously!)

Dedicated to all the children
Who've captured my heart
Who hurt,
or who are hurting
That I want to take in,
and hold, and love.
To the children who are voiceless
Who I fight to give a voice
To the children who lived
Or who are living
Without love.
To the children who are loved
But love cannot help,
Only the Love which is God
And the miracles
He performs
To the children
I want to give the world
And love.

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Today we pick my big brother up from the airport! This Thanks-Giving he will have someone to spend it with, and will be surrounded by people who love him. Welcome to Albuquerque, Brian!

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This Thanks-Giving I'm thankful for everyone. For the voiceless, for the lonely, for those who you don't hear about every day, for the precious children of God who sometimes feel worthless, but to me, mean the world. You are children of God, and, if only by He and I, are loved. So happy Thanks-Giving to everyone. To the every-day people, who make every day special.

The aftermath

I'm depressed, and confused, and heartbroken. I keep up with a lot of kids, and every time one passes it hurts. But every once in awhile, one hits me really hard. Ella stole my heart. And the way I found out yesterday made it even worse. I feel like such a complainer, too, because if I'm hurting like this, I can't imagine how much her family is hurting. I thank God that I've never felt that, and hopefully never will, but at the same time I know that even though my pain is much, much less, it is still pain and I have a right to feel it. Fly high princess. You are always loved and will be missed, until that glorious day we are called home.

DIPG Treatments & More

I'm extremely shaken over Ella's passing, and needed to do something constructive.

It is a common misconception that there is nothing that can be done for a DIPG patient, and it is simply not true. Here are some treatments out there for DIPG patients*-

~Chemo & Radiation can prolong the life of a child with DIPG and to an extent, shrink the tumor
~Antineoplaston treatment @ the Burzynski Clinic in TX
http://www.burzynskiclinic.com/ - http://clinicaltrials.gov/ct2/show/NCT00003458?term=antineoplaston&rank=12 - 6 DIPG children have been confirmed cancer free for at least 5 years
~Envita
http://envita.com/ - In many DIPG patients, envita improved quality of life and extended their lives
~Nimotuzumab
http://clinicaltrials.gov/ct2/show/NCT00600054?term=NCT00600054&rank=1 - http://clinicaltrials.gov/ct2/show/NCT00600054?term=diffuse+AND+pontine+glioma&rank=1

To my understanding, antineoplaston treatment & envita are not covered by any insurance companies, though they seem to be getting results and have very minimal side effects

*Please note that I cannot guarantee the accuracy (or lack there of) listed here.

What are you trying to tell me???

Today I'm sitting at my computer, on C.O.A.L.s Foundation, going through names & CB (CaringBridge) sites, and it's like all the names just scroll by, but one is just jumping at me. I keep scrolling. I stop. Something's telling me to scroll back up. I can almost here it in my head "Stop- Go back - Haley Jones*- her name is Haley Jones*". So I scroll back up...there it is, Haley Jones*. I click her link. I find out she has DIPG. Same as Ella, and the numerous other children I've recently (but not intentionally) discovered. Now, this is totally terminal** and a rare childhood cancer (and childhood cancer in general is considered rare). Yet this is the fifth or sixth child I've found with it in the last month. I start falling in love with Haley. And then, I look down to the most resent journal entries...Haley died more than eight months ago. The introduction hadn't been updated. Call me crazy, but I really feel God had a hand in this, I just don't know why.

Lord, before this month I've only heard of one child with a DIPG tumor. Now everywhere I go, you are sending me stories of children with this tumor. What am I supposed to do? What message are you trying to send me? I feel you're trying to tell me something, but I don't know what it is! Do I donate to a certain foundation? Do I read more about this? Jesus, guide me. Tell me what it is you want me to do. I'll listen. I may be reluctant, but I'll listen in the end. I'm so confused. Haley died months ago...she is a precious child with an amazing story, but why did you show me her story? Why was I able to read her name while quickly scrolling through pages, but no one elses? You are showing me these children, all with one thing in common- a deadly tumor. Where do I go from here?

*Child's name changed
**There are VERY few (I've heard there are 7 confirmed 5 year survivors, there may be more) survivors, if any. You can never reall get a solid dx because the location prevents it from being biopsied. It is possible the few survivors did not in fact have DIPG, but something else. Possible, but unlikely. No one really knows.

I will be posting more about DIPGs, as I don't believe anything is a coincidence and maybe I can help someone out there.

Peace, love,
F.R.O.G! (Fully rely on God!)

OR as Zack would say,
"Peace, Love, PLATELETS!" LOL

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UPDATE- I just went to check on Ella. She passed away. Yesterday, 9:45 pm. One of her last requests was McDonalds, which she could not eat. But heaven is even better than McDonalds. I just have to trust that. I have to trust God that she is being taken care of and loved.

I can't believe this...I just can't!
Ella's CaringBridge

Check out this give away from MckMamma!

Today Renee (and her husband deployed husband Frank, daughters Kennedy, who has Down Syndrome & bravely battled leukemia, Kassidy who is 9 years old, and her sons Kameron, age 7, and Keeghan, who is a year old) from Life With My Special Ks introduced me to MckMamma (and her husband Prince Charming, precious MckKids, Big Mac, MckNugget, Small Fry, & MckMuffin, aka MckMiracle) and her blog My Charming Kids and the contest she's holding.

As you probably know, I LOVE photography. It is my therapy, it is my way of looking for the good in life, and documenting the bad, so that people can become aware of the problems in this world and help be a part of solving them. So when I heard that part of the prize was camera lenses for whatever camera you have, I freaked out! How cool would that be? Think of how much that could improve my non-profit photography project,Memories and Miracles Photography! And get this- all you have to do is check out MyCharmingKids.net, post a comment, and post about it in your blog!

"TOAST"

I was reading a post in one of Christine's blogs, Smiles and Trials, and it inspired me to post an entry here in my own blog. A pretty unrelated entry, but an entry none-the-less. Here is an excerpt from her post and the comment I left.

"Thankfully, and friends can vouch for me, I have a "Bring it on" attitude! If it weren't for this attitude, I would have already been toast by now. ;)"

That excerpt made me laugh and inspired my own post... The reason is that any time my instant messenger freezes up (usually the rest of my computer follows. I only talk to one person on the IM, who is my mom's friend, as well), a little pop up comes up, and says, of all things, "TOAST".

So even when my computer is crashing, and my day is going askew, there's always a little giggle to be found, and some fresh "toast"!

HELP ME GET THIS "WOMAN" OFF YOUTUBE!!!

You may or may not know a little girl by the name of Taylor Warren who is battling leukemia. Surfing YouTube today I discovered someone had posted an attack against her and her family.

This "woman" (and I use that term lightly) posted an attack at her family titled "Taylor Warren - Battle Against Junk Food", and started the video by saying "Please don't feed your children like this!" and showing COPYRIGHTED photos of Taylor. Her family has made it clear by the no-right click & display of the photos that they are not to be taken. She says she does not mean to single her out, yet she is posting pictures she shouldn't even have, basically going "ooh! Look what she's being fed! Now she has cancer and they're still harming her!" If you've had a child with cancer, you know what a blessing it is for them to be able to eat anything at all!

Please, join me and help get this monster off youtube!!!

CLICK HERE to watch the video
Click "FLAG", then in the drop down menu, mouse over "Hateful or Abusive Content" and then "bullying". I have attempted to alert the family and hopefully they will report the copyright infringement, and with your help we should be able to get this "woman" of of youtube and away from precious Taylor!

I will add a "Mr Linky" to this as soon as I can. When I do, if you've posted on your blog/myspace/etc about this, please add the link to it here (that way not only are you helping, but you will hopefully get some extra views, too!)

THANK YOU!!!

Then Sings My Soul Saturday - Rush

*Phew* I managed to click "new post" at 11:59pm---- just in the nick of time! ("nick of time"? How do you spell the nick anyways? Is it "nitch?" "nic?") So even though it's not posted on Saturday, technically it still counts, right?

This song probably means something different to you, but to me it is very symbolic of something you might not expect. I'll explain after I paste the lyrics


"Rush"

by Aly & AJ



Into your head, into your mind

out of your soul, race through your veins

You can't escape, you can't escape.



Into your life, into your dreams,

Out of the dark, sunlight again.

You can't explain, you can't explain.



Can You feel it, can you feel it,

Rushin' through your hair,

Rushin' through your head,

Can you feel it, can you feel it,



Don't let nobody tell you, your life is over,

Be every color that you are,

Into the rush now,

You don't have to know how,

Know it all before you try.



Pulling you in, spinning you 'round,

Lifting your feet right off the ground,

You can't believe it's happening now.



Can You feel it, can you feel it,

Rushin' through your hair,

Rushin' through your head,

Can you feel it, can you feel it,



Don't let nobody tell you, your life is over,

Be every color that you are,

Into the rush now,

You don't have to know how,

Know it all before you try.



It takes you to another place,

imagine everything you can.

All the colors start to blend,

Your system overloads again.



Can You feel it?



Don't let nobody tell you, your life is over,

Be every color that you are,

Into the rush now,

You don't have to know how,

Know it all before you try.



Don't let nobody tell you,

Yeah, yeah, yeah, yeah

Don't let nobody tell you,

Yeah, yeah, yeah, yeah



Don't let nobody tell you, your life is over,

Be every color that you are,

Into the rush now,

You don't have to know how,

Know it all before you try



Yeah, yeah, yeah, yeah

Yeah, yeah, yeah, yeah




To me, this song symbolizes a period in time after the diagnoses of a serious disease. Here is how I see it-

Into your head, into your mind - suddenly everything in your life is turned upside down. It's hard to think about anything else. From one appointment to the other, handfulls of pills, pokes, prods, scans, like a ball in a pin ball machine.
You can't escape, you can't escape -at first, you just want to run away. How can this be happening? Why me? How can I be healthy, happy, living my life and then the next I'm pulled into this mess! I want it back like it was!
Into your life, into your dreams,
Out of the dark, sunlight again.
You can't explain, you can't explain. -But one day it hits you, that you have to sink or swim. As Lance Armstrong said, "You have two choices, physically and emotionally. Give up, or fight like hell". Are you going to live in self pity, let the fear consume you, or just pretend it isn't happening, or are you going to kick ass? (pardon my french) You realize you may never know why you're sick, why it happened to you, and that's irrevelant. The point is you do have it, and if you let it, it will kill you. So you've made up your mind- no matter what happens, you are going to fight to the finish!
Can You feel it, can you feel it,
Rushin' through your hair,
Rushin' through your head,
Can you feel it, can you feel it, -you're in control again, you're pumped up! You CAN do this! You WILL win!
Don't let nobody tell you, your life is over,
Be every color that you are, -Don't give up, don't let anyone tell you your life is done! Live to the fullest, shine! Be every color that you are!
Into the rush now,
You don't have to know how, -you don't know what's going to happen, you don't know how you're going to do it, but you are ready. Before you stands a rush of tests, appointments, doctors, and a life you never thought you'd be experiencing. Looking ahead, into the unknown, you take a big breath, you will get through it. How, you don't know, but what you do know is that you are going to win!
Know it all before you try. -Soon enough you're going to be there, soon enough, it will be a part of life. Don't worry about hows or whys, it won't take long. You'll never be "used to it", but you will come to accept it.
It takes you to another place,
imagine everything you can.
All the colors start to blend,
Your system overloads again. -you're not living in the life you knew before. This is a whole new world, and it's not an easy one. It's hard not to think of the fear, and the pain, and to wonder what's going to happen to you. You're having doubts...can you do this? Is it worth the fight?
....Can You feel it?.....
Don't let nobody tell you, your life is over!
Be every color that you are,
Into the rush now,
You don't have to know how,
Know it all before you try. -Yes! You can do this! Your hope takes over, and you realize that you may not know what's ahead, but there is always hope. You are going to fight! You are going to win! Be who you are, live out loud! Shine like the stars, let your colors show! This is your life and you're going to live it!!!

Here is a link to a video of the song, with lyrics. Enjoy!

http://www.youtube.com/watch?v=HnGQYz3mD_s
(note- I did NOT make this video, just found it on youtube =) )