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I'm a 3 time CANCER SURVIVOR!!!!!!!HOOORAH!

MySpace CommentsMySpace Codesmyspace Layouts STORMY AT 2008 RELAY FOR LIFE in Grundy County.We helped raise 71,000 Dollers to help fight back, remember,and find a cure.
I just turned 11 years old and Will be going into the fourth grade. Stormy was diagnosed in June of 2001 shortly after her 4th birthday with Acute Promyelocitic Leukemia in short A.P.L. It's a rare form of Leukemia . Thier are only 15 cases diagnosed yearly. Stormy had very aggressive chemotherapy in 2002 and went into remission and was then put on maitenance therapy which inluded the chemos Methotrexate,6Mp, and Atra. She remained on these chemos orally for one year. Shortly after her one year was up she was taken off all chemos and meds except Septra. We then moved to Tennesee to be close to family. We were there only two months when I found two lumps in her neck while brushing her hair.We rushed her to T.C.Thompson Children's hospital in Chatanooga. The nurse came out drew blood and later informed me that her platlets were low!!! We knew that she would have to face this horrible beast again. As her parents we were devestated! We soon found HOPE in the form of St.Jude's Childrens research hospital. The expert on Stormy's type of Leukemeia was waiting for us when we arrived.He explained that it was rare that a relapse occurs in this type of leukemia. Blood tests showed that her leukemia precentage was 86%!Dr.Razzouk explained that thier was some research on a new drug called Arsenic Trioxide. He was talking about Rat poision. My heart fell to the floor! My husband and I debated on what to do because although the Arsenic trioxide showed promising results she would be the youngest patient at St.Judes to recieve this drug. We prayed really hard and felt confident in going through with this new drug. Her frail body handled 10 doses out of a possible 23. It was killing her leukemia but it was working to fast. It caused her lungs to fill with fluid and she was in severe pain all the time. On Dec 8, of 2002 she was rushed to I.C.U.Stormy was placed on a ventilator and we were told that she would not make it.On Dec 27th she was taken off the venitlator as her lungs showed signs of improvment. Praise god!!!So, the next plan was to go for a bone marrow transplant!First, they had to find a compatiable donor.It ended up being her super brave brother!! Chris was a perfect match!! So in Feb of 2003. Her brother donated bone marrow and she recieved his cells.They grafted very quickly and despite some fevers and terrible nausea from more chemo she done quite well. With the help of big brother she stayed in remission for nine months. She relapsed again in Oct of 2003.We were devestated and felt like we were playing god in a way.So back to St.Jude's where the news awaiting us was not good at all.Her Leukemia percentage was now 89% and she was in alot of bone pain.The doc's told us they were runnning out of options but they would put thier heads together and come up with some type of protocall.The new plan was for more chemo. New types that she had never had before,Brain radiaton, and total body radiaton . Then to prepare her for a stem cell transplant.They again had to find a suitable donor to donate thier stem cells.They doctors decided to use daddy's stem cells because his veins were in much better condition than mine.In Jan of 2004 she recieved Daddie's supper cells! She again did very well with the tranplant but had severe Graft Verses Host Disease.She had to be on extra medication for this and go to the dermatalogist twice a week to get uv treatment.I'm happy to say that now she has been in remmission for 16 months and is doing realy good.Of course she has has suffered from long term effects from chemo and radiation. We were informed that Stormy has cataracts on both her eyes. Her pratority gland in her brain has been damaged as well as a damaged Thyroid. She remains to have left side weakness in her arm and leg. She is a fighter as she has proven time and time again! Stormy is trully a walking testimony to God's healing ways and the mighty work of his healing hands!!!!!! NEW PHOTOS ADDED ON JUNE 27TH .ME AND MY BIRTHDAY PARTY!!!!! Stormy was diagnosed in June of 2001 shortly after her 4th birthday with Acute Promyelocitic Leukemia in short A.P.L. It's a rare form of Leukemia . Thier are only 15 cases diagnosed yearly. Stormy had very aggressive chemotherapy in 2002 and went into remission and was then put on maitenance therapy which inluded the chemos Methotrexate,6Mp, and Atra. She remained on these chemos orally for one year. Shortly after her one year was up she was taken off all chemos and meds except Septra. We then moved to Tennesee to be close to family. We were there only two months when I found two lumps in her neck while brushing her hair.We rushed her to T.C.Thompson Children's hospital in Chatanooga. The nurse came out drew blood and later informed me that her platlets were low!!! We knew that she would have to face this horrible beast again. As her parents we were devestated! We soon found HOPE in the form of St.Jude's Childrens research hospital. The expert on Stormy's type of Leukemeia was waiting for us when we arrived.He explained that it was rare that a relapse occurs in this type of leukemia. Blood tests showed that her leukemia precentage was 86%!Dr.Razzouk explained that thier was some research on a new drug called Arsenic Trioxide. He was talking about Rat poision. My heart fell to the floor! My husband and I debated on what to do because although the Arsenic trioxide showed promising results she would be the youngest patient at St.Judes to recieve this drug. We prayed really hard and felt confident in going through with this new drug. Her frail body handled 10 doses out of a possible 23. It was killing her leukemia but it was working to fast. It caused her lungs to fill with fluid and she was in severe pain all the time. On Dec 8, of 2002 she was rushed to I.C.U.Stormy was placed on a ventilator and we were told that she would not make it.On Dec 27th she was taken off the venitlator as her lungs showed signs of improvment. Praise god!!!So, the next plan was to go for a bone marrow transplant!First, they had to find a compatiable donor.It ended up being her super brave brother!! Chris was a perfect match!! So in Feb of 2003. Her brother donated bone marrow and she recieved his cells.They grafted very quickly and despite some fevers and terrible nausea from more chemo she done quite well. With the help of big brother she stayed in remission for nine months. She relapsed again in Oct of 2003.We were devestated and felt like we were playing god in a way.So back to St.Jude's where the news awaiting us was not good at all.Her Leukemia percentage was now 89% and she was in alot of bone pain.The doc's told us they were runnning out of options but they would put thier heads together and come up with some type of protocall.The new plan was for more chemo. New types that she had never had before,Brain radiaton, and total body radiaton . Then to prepare her for a stem cell transplant.They again had to find a suitable donor to donate thier stem cells.They doctors decided to use daddy's stem cells because his veins were in much better condition than mine.In Jan of 2004 she recieved Daddie's supper cells! She again did very well with the tranplant but had severe Graft Verses Host Disease.She had to be on extra medication for this and go to the dermatalogist twice a week to get uv treatment.I'm happy to say that now she has been in remmission for 16 months and is doing realy good.Of course she has has suffered from long term effects from chemo and radiation. We were informed that Stormy has cataracts on both her eyes at this time which will require surgury in the future. She has muscle weakness in her left side and is having fine motor skill troubles. With God's Healing ways and his everlasting love We know that he will do what he feels is right for Stormy! She is OUR MIRACLE!

Journal

Saturday, July 5, 2008 6:05 PM CDT

Well hope that all our friends had a wonderfull 4th.We decided to decorate daddy's big "ol" truck and be in the city parade.Stormy had a fun time.Visitng with school friends and throwing candy out to all the kids watching the parade go by.Celebrating our Country's FREEDOM!
After that we went to a friends house where Stormy,Her big Brother Chris,ans some more kids enjoyed setting off fireworks.Stormy has never liked the big pops and bangs.She's more into all the little sparkly stuff.She's such a girl....sometimes.
She was trying to run from a firework that scared her and ended up burning me with the punk she used to light it! It hurt but I'll live!
Health wise she's doing good.We have to go back to S.Jude's for a bone marrow asperation on July 14th and 15th.She had a annual visit in June but she got sick while she was there and they nor I did not want her to go under sedation while being all stopped up plus coughing her head off.
Poor baby .She really had a tough week.The only thing that is really bothering her is aches and pains that she has that have been shooting up her hands and feet.We are going to nero when we go back in July.These are not minor little pains.They really hurt her.So keep my baby girl in your prayers. She turned 11 years old on June 19th.
Every Birthday is trully a gift.I get goosbumps everytime I see her take a deep breath,make a wish, and blow out her Birthday candles.I'm going to try to start updating more now that I'm not working anymore.i needed some time off to spend with my kids.Plus Stomy's brother Chris had a major surgurey on his knee from a football injury he's had for 3 years now.
So say a prayer for Chris to as he hates being layed up on the couch ,not able to bend his leg and having momma wait on his every need.
talk with ya soon ,
Tonya

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NO HOSPITAL
stormy lott p.o. box 142
tracy city.Tn 37387
931-592-3734

Links:

www.hugsandhope.com   quiltsoflove.com
www.caringbridge/ar/emmagrace   www.smilequilts.com
www.caringbridge/tn/ptyler   www.stjudes.org.


 
 

E-mail Author: plainsmiles722@yahoo.com

 
 

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