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Madison Smith's Website - Viewing Journal - Friday, November 7, 2008 9:59 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 - Friday, November 7, 2008 9:59 AM


Journal
November 7, 2008 4:00pm

Madison was scheduled to go to Duke today. We were going review her results of the Metabolic Exercise Test. Duke called at the last minute today and postponed our appointment because they had 3 physicians out unexpectedly. We are supposed to be called later today or Monday to be reschedule for sometime next week. I have asked them to forward me a copy of her results as they are still not showing up in our patient portal. I was a little disappointed that we had to be rescheduled because we are ready to understand what exactly was meant by “clinically significant”. We will update when we have new information.

Madison has had a pretty good week for the exception of a little ear infection. Her head hasn’t really hurt too much. We are still taking the new medicine that Neurology prescribed 6 or 8 weeks ago. Maybe it is going to work after all.


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