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Madison Smith's Website - Viewing Journal - Saturday, January 7, 2006 5:09 PM
Thank you for taking time to inquire about Madison and how she is doing. Madison was diagnosed with high risk T-cell Acute Lymphocytic Leukemia on September 24, 2003 at Duke Hospital in North Carolina. She had just turned three at that time. Leukemia is a blood cancer that is not believed by medical professionals to be inherited at this time. She presented with a mass in her chest that encompassed the majority of the upper half of her chest area. The mass was related to the leukemia. It collapsed her left lung and a portion of her right lung and was shutting off the blood flow from her heart to the rest of her body. She was in the pediatric intensive care unit for almost two weeks on a ventilator. We weren't sure then if we would ever have a chance to fight the leukemia. Madi is a true fighter and pulled through! After getting off the vent, Madison was able to achieve remission by the 28th day of treatment. She underwent two and half years of aggressive chemotherapy (protocol 1961) and radiation for the mass. On Christmas Eve 2005, a little over two years after her diagnosis Madison had a chest CT done that revealed that the mass was finally gone! Madison finished her treatment in January 2006. Children that have cancer are not considered "cured" until they have been off treatment with no-reoccurrence for five years. Duke has followed Madison throughout her treatment. She will continue to be followed by Duke. In April 2008 Duke uncovered that Madison has an obstruction in 3 of her veins. The veins involved are the Left innominate vein, the left (lower) internal jugular vein, and her sub-clavian vein. These veins are responsible for carrying her blood back to her heart and hers are 100% occluded. What is going on with her right now is likely a result of the mass she had in 2003. There aren't really any easy fixes for what is going on with her and no real cases that it can be compared to. We are working with Duke in an effort to resolve this issue. In February 2011, Madi moved from in-remission to "CURED" from her disease We've come this far for a reason! Please continue to lift all of us up. The care and concern that we have felt from all of you continues to be an encouragement to us. Thank you...
 
- Allison

Update - Saturday, January 7, 2006 5:09 PM


It has been an amazing year! We received great news that the mass in Madison's chest that had once encompassed almost her entire upper chest cavity was all but gone. She had a CT scan on December 23rd which proved that all that seems to be left of the mass is calcified scar tissue. This was awesome news for us, and a great blessing for us to get around the holidays.

We had a wonderful Christmas this year. Although we tend to travel around the Christmas holiday, this year we decided to stay home. It was nice to spend Christmas in our own home with the family. During the holiday we enjoyed out of town guests and catching up on missed family time. It was great!

Madison's favorite present this year was a tent & a Easy Bake Oven. Really that was all that she wanted. The real gift was the news that we received on Jan 4th. Madison's Bone Marrow Test that was performed on January 3rd came back completely clear & free of any leukemic cells. This has been a huge sigh of relief for all of us and especially Madi!

January 3rd 2006 also marked the date of Madison's last chemotherapy treatment. We are happy to be rid of the majority of the various medicines that she has been on since 2003. Madison will still be followed at Duke every month at which time she will have to do blood work. Her doctors made a decision to continue to give her IV-IG (immune globulin) until spring. This helps boost her immune system; they felt it would be a good idea since we are in prime time flu season. Until we are finished getting the IV-IG we are going to leave her port in.

Madi is now a little apprehensive about getting her port out because she doesn't want them to have to take blood from her arm each month. We are slowly working on her about this. We had a bad blood draw from her arm when she was first diagnosed and unfortunately, it hasn't been anything that she's forgot.

Her doctors say that it will take Madi's body three to six months to get back to what would be considered normal for a child her age. The thought of normal seems really nice at this point. It will be great to not have to worry as much about germs and other sick people around. Of course, we've turned into human radars; we can sense sickness and nastiness five miles away! Maybe we will get back to being normal people too… Ha Ha…Never!

Today, I am thankful! I am thankful for our God that is so good! I am thankful for the staff at Duke, for the care that they have given Madi. I am thankful for all of you that have been a huge blessing to us through all of this but most of all I am thankful for Madi! She has been a strong, tough, brave, little girl through all of this. We are thankful that the lord blessed us with a child that could cope the way she has from the beginning until now. Isn't amazing how “one small voice can teach the world a song”?

We love all of you! Please keep all of us in your prayers.


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