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Madison Smith's Website - Viewing Journal - Wednesday, January 7, 2004 7:00 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 - Wednesday, January 7, 2004 7:00 PM


Madison had her regular treatment at Duke on Monday. She had to have another spinal tap. This was the first one in several weeks. All went well, and for the first time Madison didn't cry even the first tear. It's amazing to us how truly brave she is. The procedure is extremely painful and the woman who preformed it did a remarkable job.

Since our trip to Children's in St. Louis Madison has been doing much better. She hasn't had a fever or anything particularly wrong. Monday her counts were way up from where they have been and there wasn't a need for another blood transfusion.

We were given our tentative treatment schedule for January and February and provided that everything goes well Madi is only scheduled for seven treatment days at Duke during that time. March will begin her 're-induction' period. This means that she will repeat the intensive treatment regimen that she received when she was originally diagnosed for roughly 28-days. Originally she was going 3 days a week but because they will be changing one of the drugs for re-induction we should only have to go once a week and sometimes twice but not three times a week. They will also be putting her back on the steroid, which severely alters her personality, eating habits and proved to really disrupt her sleep the last time. Luckily though, it should only be for about 28 days. According to our calculations with Madi on the steroid and a new baby due Feb 22, 2004, March will likely prove to be a sleepless month for the whole family. Hey what can we say we're in this together!!

Madison is not scheduled for another treatment until January 15th. Her doctors think that the Chemo that she is presently taking will not make her counts drop as drastically as they have up to this point. Unfortunately, there is no guarantee they can only speak about previous experience. We have learned that every child reacts very differently to the same drugs. Every situation is different. We will hope for the best.

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