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Madison Smith's Website - Viewing Journal - Thursday, December 4, 2003 8:00 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 - Thursday, December 4, 2003 8:00 PM


Madison's surgery to insert her portacath began on time this morning around 8:45A.M. Again, the portacath is a line that is under the skin in her chest that has a port that can be accessed to administer drugs, IV's and get labs throughout her treatment. This reduces the necessity to stick her with needles in other places so frequently.

Overall the surgery went well, it took less than an hour. Madison is at home resting and will be a little sore for a few days.

The surgeon came out when he was finished and said that he had an extremely difficult time inserting the line. He tried five or six times to insert it in her left upper chest area, unsuccessfully. He then tried four times to insert through her lower neck, unsuccessfully. Finally he tried her right side five or six times and when he was ready to conclude that it could not be put in, he tried one last time and was successful.

He said that he had never run into this before. He claimed that the surgery is one of the most common and simple procedures done in the operating room. It was his feeling that Madison's overall anatomy had changed significantly from when the mass was so large and compressing against everything. Because of that, everything on the inside has shifted from where it would normally be, causing the difficulties.

Madison should finally be able to have her pic line removed from her arm on Monday. She has had it for more than two months and is quite sick of it. She is still on IV fluids at home, at night and will continue until her appetite improves.

Thank you for your continued concern and support.

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