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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
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!
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