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Madison Smith's Website - Viewing Journal - Tuesday, March 22, 2005 10:00 AM
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 - Tuesday, March 22, 2005 10:00 AM


Madison went to Duke yesterday for her regularly scheduled treatment. She was scheduled to receive her chemo, an IV antibiotic that she gets monthly and a spinal tap. Everything went as planned and actually went exceptionally well! The strength that she displays through all that she goes through continues to amaze me. Yesterday through them accessing her port (putting the needle in), taking it out and most of all, the spinal tap (a needle going into her spinal column) she never cried the first tear! She just took deep breathes and tried to get through it. It was truly amazing!

For another praise, Madi's counts were up over 4000 yesterday. This marks the second time ever since she was diagnosed that her counts were that high. The first time was two weeks ago. When we speak of her counts the numbers represent her ANC (Absolute Neutrophil Count) which is her ability to fight infection. The number must be over 500 for her to participate in the normal activities that other people do. We have been well below that number many times but often are around the 700-1000 range. So needless to say, 4000 is wonderful!

March 17th marked one month since Madison's chronic diarrhea symptoms went away. Although they went away, she was still testing positive for blood in her stool after that. She had the symptoms dating back to Thanksgiving and had consistently tested positive for blood since January. Duke wanted to give her one month to be free of diarrhea to see if the blood wouldn't go away on it's own before doing a colonoscopy. Unfortunately, as of March 19th , she was still testing positive for blood.

Duke will be scheduling a colonoscopy for the first week in April or so. Madi really wanted to go see her Grandparents in the St. Louis area for Easter. Since she had some time off from school we went ahead and scheduled a trip. I expressed to Duke yesterday, that we really didn't want our trip ruined by this. We prefer to ruin our trips on our own by hospital visits while were there! Just kidding, but it seems that way. Madi has been feeling too good to make her feel bad right before she goes on a trip that she is really looking forward to. Further, we just want to have a good time, we don't want to worry about any results especially if they aren't what we want to hear and we just want to see Madison enjoy the trip. Duke agreed and said that they didn't see any major reason that we couldn't do this since her counts are good and she doesn't have any other symptoms. Hooray!!!!

Since last update Madison has been doing great. She has been able to go to school every day, participate in dance as well as swimming. She's getting better at swimming and tries really hard to be brave there as well. Last week, she worked with the kick board all by herself and was pretty proud. We'll be glad when we can put swimming behind us. Sometimes I feel that we are mean for making her go. I also feel that practice makes perfect and every child MUST learn how to swim. I really don't think that we'll be doing her any favor by stopping the lessons. We hope that with each lesson she will feel more and more comfortable with it and will start to really enjoy it.

From our family to yours, we hope that you will enjoy Easter and the time that it affords you to spend with the ones you love. Please keep us in your prayers!

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