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Madison Smith's Website - Viewing Journal - Friday, October 31, 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 - Friday, October 31, 2003 7:00 PM


Madison's surgery that was scheduled for Thursday, October 30, 2003 was postponed until further notice. She was initially scheduled to have a portacath surgically implanted. The purpose was so they would be able to administer drugs and or fluids through the port going into her body as opposed to sticking her each time throughout her treatment.

We went to Duke on Thursday as planned for the surgery. The anesthesiologist decided against the surgery when we got there as he felt that the mass in her chest was still too large. Although the mass is 70% smaller than what is was a month ago he claimed that it is still 60% blocking several vital organs. The difference now is that it is blocking them not compressing against them as it was before. He felt that by putting Madi under, it would relax her too much to the point that the mass would compress and possibly close off her airway. Her doctors will re-evaluate in three or four more weeks to determine when the surgery will be more appropriate with less risk.

The mass has not shrunk at the speed that her doctors had expected given the treatment that she has had. Because of the type of mass that it was and where it was located the doctors were unable to take a biopsy of it. Given the above mentioned things, there are some questions as to whether the mass could possibly be something else unrelated to the Leukemia. The current plan is to continue treating the mass as they have for three or four more weeks and then explore other options.

Duke has sought the opinions of other specialists throughout the country regarding Madi and thus far all of them are on the same page. Howard and I have asked St Jude Children's Research Hospital to give us their opinion. St. Jude's and Duke have an alliance with each other. Because of this, we were able to seek their opinion without any hard feelings, but most of all, without having to physically take Madison to Memphis. Once we receive their feedback if it happens to be different, we will be able to have St Jude's suggested course of treatment fulfilled in North Carolina at Duke.

Madison's on-going chemo is scheduled for one day a week at Duke and the other drugs should be able to be administered at home with the help of home health. One day a week will be a welcomed change by all of us! Providing that all goes well, this should be the course of treatment over the next 9 months.

Madi is doing great! She was able to attend a church function for Halloween and she had a ball. We learned this week that we are expecting another little girl. Madi is excited about becoming a big sister, and has been practicing all of the chores with her dolls. Please take a moment to sign the guest book, if you haven't. We read the messages daily, and are saving them in a book for Madison. We will update this message again upon having new information.

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