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Madison Smith's Website - Viewing Journal - Sunday, December 11, 2005 8:36 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 - Sunday, December 11, 2005 8:36 PM


Madison has had a good month! She started going back to school for a full day around Thanksgiving and has been doing great with it. Shortly after school started (around October) we started pulling her out half days. She was so tired. We would pick her up from school and then she would come home and sleep for three and half to four hours. The thirty minute nap she was getting at school wasn't enough for her. All seems much better now.

Since last update Madi hasn't had any more Migraines just bothersome headaches. The headaches seem to come and go and I am not so sure that they aren't related to sinuses or allergies. They don't seem to be bad, not like they were. She had a MRI of her head two weeks ago which everything checked out beautifully. She was so brave for that MRI. It lasted over an hour and she lay there very still the whole time (without sedation). We were very proud of her. The technician said that she was really a better patient than most of the adults that he does.

Madison went in for her regularly scheduled treatment on December 6. She had what is supposed to be her last spinal tap that day. She does these without sedation because of some nasty reactions that she has had to sedation drugs in the past. Most of her spinal taps have gone pretty well. We've had a few that I would definitely say were terrible. Tuesday's wasn't quite that bad, but it was certainly the worst one she's had in sometime. Dr. Beam said it always seems like the last one doesn't go so well. The results came back fine, it was just the procedure itself that was bad.

Before the procedure Madison told me that she was going to be so brave and not cry. After the procedure she said “mommy I tried really, really hard to not cry but it hurt so bad, I had to cry a little.” It has and continues to break our hearts the pain that she has had to go through. Why in the world she thinks she shouldn't cry is beyond our comprehension.

The first Tuesday in January Madison will be going in for her last chemotherapy treatment. She will also be having a bone marrow test at that time. This test will also be painful but should be much quicker than a spinal tap. Please pray for Madison to get through this test. It is our prayer that this test will come back free of any leukemic cells (blasts). None of us are expecting anything but clear results from that test.

Thank you for being so wonderful to Madison and our family! Your prayers have lifted us in times that we felt knocked down. Thank you for all of your support since this all started in September of 2003.


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