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~*~ Bailey's Webpage ~*~

~See Bailey's Smile Quilt ~



Welcome to Bailey's web page. This web page has been made to keep our family and friends updated about Bailey's fight against Neuroblastoma. Bailey was diagnosed at 9 months with Stage IV Neuroblastoma on December 29, 1999. He has had a total of 13 rounds of chemotherapy, an autologous bone marrow transplant, many surgeries, radiation, and 30 months of accutane.

God, please bless our family and all the families fighting this horrible disease. Please give our children the miracles they need so that they can show the world the power of your love.


Bailey was diagnosed at 9 months w/ Stage IV Neuroblastoma, n-myc non-amplied, favorable histology. He was treated at that time as intermediate risk because of his age with 8 rounds of chemo, surgery and inter-operative radiation. He was NED for 7 months and relapsed. He was then treated as high risk and did another 6 rounds of chemo, bone marrow transplant and stem cell transplant, external beam radiation, followed by 6 months of accutane. He was NED before his bmt and sct, then 10 months after completing accutane had another surgery to remove what was determined through pathology to be a ganglioneuroma on his lung. He then was NED for 10 more months, when a new tumor showed up behind his liver. We were told by both UCSF and MSKCC that it was inoperable and the best they could do was try to biopsy to see what it was. Our amazing surgeon at UCSF removed the ENTIRE mass on 1/16/04 and Bailey started 2 years of accutane. The mass was 98% ganglioneuroma and 2% neuroblastoma. He completed the 2-year course of accutane in February of 06. This is the first complete year since he was diagnosed that he has been off all treatment. So, at the age of 5, he was considered a 4-time survivor of NB! On February 11, 2009, Bailey had his LAST MIBG Scan ` 5 years after his last surgery and 3 years since finishg treatment! His aorta has narrowed from all of the tumors wrapped around it and all of the radiation to that area, he has LOTS of dental issues, he has lost some hearing, and his growth may become a factor. We will take these small issues to have him here with us! We are very thankful for every day!



~ Into My Heart ~

You tiptoed right into my heart;
I knew I loved you from the start -
That tiny hand, that baby face,
A world of filigree and lace.
Your smile, your voice, so sweet and dear,
You filled my world with endless cheer.
You own my heart, dear little one,
You fill my world with endless fun.
Togetherness, each hug, each kiss -
'Tis all of these I wouldn't miss.
I love the time I tuck you in,
The mornings when our days begin.
Dear little boy, you'll always be
The whole wide world and all to me.
I'm thankfull for each hour we spend
And all the happiness you lend.
It matters not when we're apart,
You'll always live within my heart.

Garnett Ann Schultz


~ He's My Son ~
by Mark Schultz

I'm down on my knees again tonight
I'm hope'n this prayer will turn out right
See, there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries
Not to cry
As the tears fill her eyes

Can you hear me
Am I getting through tonight
Can you see him
Can you make him feel all right
If you can hear me
Let me take his place somehow
See, he's not just anyone, he's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God, who he needs right now is you
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired
And he's scared
Let him know that you're there

Can you hear me
Am I getting through tonight
Can you see him
Can you make him feel all right
If you can hear me
Let me take his place somehow
See, he's not just anyone, he's my son


~ The Littlest Soldiers ~
by Cheryl Jagannathan
Mother of Robby Putnam, Leukemia SURVIVOR

The medals on our chests
Are broviacs for meds
Helmets won't stay on
Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No Marine could do as well
We are only children
Living in this hell.

So bring on the medals
The purple hearts of wars
The gold cross, the silver star
To place upon our scars.

For we are the children of cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our REWARD!

Journal

Wednesday, February 11, 2009 12:48 AM CST

DAY 2,738

CHECK OUT BAILEY'S NEW WEBPAGE

www.caringbridge.org/visit/baileyj

Updates will be posted there from now on! It has HOCKEY!!!!!!

Read Journal History


Sign and view the guestbook
Sign and View Guestbook

View personal photos

View Photos

Hospital Information:

UCSF Medical Center
505 Parnassus, 7 Long
San Francisco, CA
415/476-1000

Links:

http://www.stbaldricks.org   THE SAINT BALDRICK'S WEBSITE
http://www.caringbridge.org/visit/baileyj   BAILEY'S NEW WEBSITE
http://www.caringbridge.org/nv/haley   HALEY'S CARINGBRIDGE WEBSITE!


 
 

E-mail Author: tahoejohnsons@sbcglobal.net

 
 

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.
 
 
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