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Madison Smith's Website - Viewing Journal - Wednesday, September 22, 2004 12:00 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 - Wednesday, September 22, 2004 12:00 AM


We took Madison locally to have her blood drawn on Monday. Her doctors from Duke had requested that we do this to see if her counts would be high enough for them to move forward with the spinal tap and bone marrow test on Tuesday (today). Still, her counts were found to be too low so we didn't end up going in for the two tests.

We ended up having to take her up to Duke on Monday after all as they decided that they wanted to go ahead and do some x-rays of her lungs. She had been having some problems breathing over the weekend and they wanted to check just to be safe. Her x-rays came back normal and although they couldn't hear any problems with the stethoscope they heard her wheezing when they examined her. They aren't sure why she was wheezing but they gave us a medicine that has helped her tremendously.

Madison's counts have been down for a long time now. They told us that if her counts were low Monday (September 20th) that they !
would raise their eyebrows but wouldn't be overly concerned. They also said if they were still low this coming Monday that it would cause concern for which they would then go searching for signs of relapse. The likeliness of relapse is roughly one percent. We have been comforted by the large percentage in our favor.

On Monday September 27th Madison will be having the bone marrow test at Duke regardless of the status of her counts. Duke has asked us to take her locally on Friday of this week and have her blood work done and advised further that if her counts are still below the magic number that we should take her again on Sunday and have them done again.

Once the bone marrow test is complete it will probably be the next day before we will know the findings of the test. Her doctors get preliminary findings for which they don't like to share with families because they aren't the official results and sometimes there is enough difference between the two that !
it changes everything. We will update as soon as possible.

As
always, please keep our family in your prayers.


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