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Madison Smith's Website - Viewing Journal - Thursday, November 20, 2003 5:00 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, November 20, 2003 5:00 PM


Madison had a rough start to the week this week but as we are approaching the end of the week things have settled back down. Monday she was scheduled for her normal treatment day at Duke in addition to a planned spinal tap. As a result of the spinal tap being scheduled she wasn't allowed to have anything to eat or drink that morning prior to arriving.

Despite her empty stomach, she was sick more than nine times before arriving at Duke. Needless to say, by the time we arrived she was dehydrated and needed an IV started for fluid. After her doctors ran her blood work they discovered that her hemoglobin was well below normal so, she had to have a blood transfusion while we were there. Her doctors explained that because chemo kills the good cells and the bad cells she wasn't producing as many red blood cells as normal which was why it was so low. Although once again the vomiting was more than four days after her last treatment they still felt that it is likely related to it.

Just to be sure, they ordered X-rays. From what the X-rays displayed they didn't feel that any of it was related to the mass or problems that it could cause. The mass in her chest has not made much change at all in size since the last CT scan three weeks ago. Her doctors didn't discuss rescheduling her portacath surgery. We are not planning to proceed with the surgery until we hear back from St. Jude's with their feedback regarding Madi. Her doctors at Duke mentioned that they felt for sure we would hear something from them (St. Jude's) this week.

We are happy to say that the spinal tap on Monday was by far the best one yet that she has had procedure wise. The doctor did such a great job that it was virtually a non-event unlike the previous 6 or 7. Madi has had some terrible reactions to some of the drugs that are used for sedation. As a result, we have tried several approaches & different drugs. This time we didn't use any sedation medicine just pain medicine. She was awake, alert and very calm. We will do all of them this way from now on. Now we know which drugs she needs to stay away from. This was a big win!!!

Madison's white blood count was extremely low on Monday. We have stayed in most of the week trying to keep her well. Please continue to pray for our family.

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