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Madison Smith's Website - Viewing Journal - Tuesday, December 23, 2003 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 - Tuesday, December 23, 2003 7:00 PM


We hope all of you are preparing to enjoy the things that this holiday season brings.

Madison had her regular appointment at Duke on Monday. We were there by 8:00a.m. and unbelievably we were walking out of there at 10:45a.m. This never happens, in fact most treatment days are an all day affair lasting until as late as 8:00p.m. Well it was too good to be true as her doctors were calling on the cell phone before we got out of the parking lot.

They explained that her creatinine levels were pretty high. Generally this means that there is something going wrong with the kidneys. Madison's creatinine had never been high before, not even when they were expected to be high due some of the drugs she received while in the intensive care unit. They wanted to test her again.

They tested her again, and although it was a little lower, it was still more than double the normal range. They then ordered an ultrasound of her kidneys, but prepared us that it was very possible with her levels where they were, that it would not come back normal. If it didn't, she was likely going to be admitted. Her being admitted at Christmas would concur with our on going joke that we are on the holiday and weekend plan of being admitted!

The good news was almost immediate following the ultrasound that everything was normal. Her creatinine being high is just another one of many unexplained things going on with Madi. Her doctors will be monitoring it closely.

As a result of the news our Christmas plans have not been altered! Madi had to be checked again this morning in which the test revealed that her creatinine level was perfectly normal! Providing that everything else goes well, she will not have anymore labs run until the 29th.

St. Jude's has finally responded to our request for a second opinion. In a nutshell they say that they concur with the diagnosis and the description of the mass. At this point they also agree with the exact treatment plan that Duke has implemented, however, they have requested to look at some of the CT scans and other various films. They said that they would be in a position to comment further after reviewing the requested films.

Madi's counts are unexpectedly back down again. They are down almost as low as they have been. She is extremely susceptible to infection right now, but her doctors felt that they should be going back up in 3 or 4 days from this past Monday. Sometimes Madi's counts have not been what was expected at certain times.

Madison really looks good and seems to feel good. She is looking forward to spending some time with her brother Cody in the next few days.


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