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Madison Smith's Website - Viewing Journal - Tuesday, February 10, 2004 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, February 10, 2004 7:00 PM


Madison went to Duke for her regular treatment as planned yesterday. She was scheduled to have another spinal tap. The procedure was completed but didn't go as smoothly as we had hoped. When they do the procedure a needle is inserted to draw fluid from her spinal column. With each spinal tap that Madison has had more scar tissue has formed in that area. The doctor has to be able to get through the scar tissue to be able to reach the fluid. Yesterday the needle had to be reinserted more than five times to get the fluid. It was extremely uncomfortable for her but as usual, she pulled through like a champ.

Madison's counts were good yesterday which means that she is not presently as susceptible to infection right now. She has been really pale and has had darkness around her eyes over the last couple of days. The doctor also noticed a heart murmur again yesterday. The murmur was present when she was first diagnosed but disappeared when the mass in her chest had shrunk significantly. This time they thought that the murmur might be a flow problem as a result of low hemoglobin. Upon receiving her blood work back, her hemoglobin was fine and she was not in need of another transfusion.

They don't think that the murmur has anything to do with the mass. They will continue to monitor the murmur. In the coming months they will send Madi for a work up in pulmonary and possibly do a sleep study on her to determine if the labored breathing that she has had since her original diagnosis is just her new normal as a result of being on the ventilator or some other type of problem. It is very likely to be as a result of the vent.

They explained yesterday that the mass in her chest may very well never go away. As long as it is not growing and there aren't any Leukemia cells present it shouldn't cause Madison any problems or alter her prognosis in any fashion. Despite the murmur and labored breathing they still do not have any reason to believe that the mass is getting bigger at this time.

We are all still awaiting the arrival of the new baby. A trip to my doctor on Friday revealed that they do not want me to go past 39 weeks. So if Maiya doesn't decide to come on her own this week we are scheduled at Duke on Monday February 16, 2004. I think that we are all ready and eager for her arrival.

Over the next couple of months with Madison's planned rigorous treatment and Maiya, things will no doubt be crazy around here! Please continue to keep us in your prayers.

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