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Madison Smith's Website - Viewing Journal - Monday, August 9, 2004 10:00 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 - Monday, August 9, 2004 10:00 PM


For Alexis Chapman

Since our last update Alexis and Linda left Duke to head to Kentucky (home) for a week. The entire family was really looking forward to being together for a whole week. They have now been home for more than two weeks.

Duke had made a referral for Alexis to go to Sloan Kettering Cancer Center in New York. This facility is recognized for treating Neuroblastoma. While there is not a permanent cure for Neuroblastoma (at least what Alexis has) known Duke felt that Kettering would be able to at least provide comfort for her and provide hope that the different treatment that they have to offer may work.

Things had been moving along for Alexis to get to New York then last week they came to a screeching halt when Medicaid ruled that it would not pay a dime for Alexis's treatment at Kettering. They stated that the procedures are not FDA approved and that they can't pay for anything that isn't approved as such. To further complicate things Kettering is a private hospital which means payment is due in full at the time services are rendered. There isn't a payment option available.

The staff at Kettering hasn't been prompt in answering the Chapman's questions. They are in the process of trying to determine whether the doctor at Kettering has reviewed Alexis's records and what their overall feeling is on their ability to help her. The Chapman's are already disgusted by the way the staff at Kettering has treated them. The Chapman's are naturally trying to make a good decision before taking Alexis across the United States. They want to make sure that they aren't jeopardizing her health further by unnecessary travel.

The cost for treatment at Kettering will be any where from 150,000-350,000. This past week we called into the Patient Advocate Foundation to see if they were aware of any other viable options for the Chapman's to explore. They were checking and planned to have some answers for the Chapman's this week. Perhaps there will be a research study going on at another facility that Alexis will be able to become a part of.

Alexis is doing okay now, she wasn't doing very well a week ago Saturday. She was unable to walk and was in severe pain. Her local doctors are treating her with Morphine at home. Since then she has gotten a little better and has regained her strength to walk. She will likely continue to be on Morphine for pain.

The Chapman's have a meeting scheduled on Tuesday the 10th for which they hope to walk away with a plan of what they are going to do. The meeting will consist of their Duke doctor, the local doctor, and hopefully the Doctor from Kettering.

If it is still the Chapman's will to go to New York we will be starting an aggressive fund raising attempt to raise the amount needed to go. The Chapman's will need help very fast, Alexis will get progressively worse quickly. Duke projected that she would be completely unable to do anything on her own by the end of September.

Please continue to keep Alexis and her family in your prayers. If you would like to send a card their address is:

Billy & Linda Chapman
HC 69 Box 410
Beauty, Kentucky 41203

We will keep you posted on new information that we have.


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