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Madison Smith's Website - Viewing Journal - Wednesday, September 24, 2008 4:15 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 - Wednesday, September 24, 2008 4:15 PM


September 24, 2008

Journal 9:00 p.m.

Today is a day of significance for our family. Exactly five years ago today marked the day that our lives changed forever. Madison was diagnosed with Leukemia in the early hours of September 24th 2003. Really, I can almost feel the numbness we felt that day all over again. Yesterday, September 23rd marked five years that Madison was loaded onto a helicopter, fully intubated (on life support) headed to Duke Hospital in Durham, NC. They didn’t expect her to even live. As I reflect on the last five years today, I choose to be thankful. I am thankful for Madison, her life, her spirit, her perseverance. We are thankful that God chose to give us the last five years with her.

As I reflect on the last five years, there have been many times that we have wished that Madison didn’t have to go through the things that she has had to during her short life. However, we are all defined by the things that we have experienced both good and bad. We believe everything that has happened or is happening is part of God’s bigger plan. Although we are unsure of the direction of that plan, we have faith that it is all for our good and his glory. So given the chance to erase where we’ve been over the last five years, we wouldn’t.

Madison has been off treatment with no re-occurrence of her cancer since January 2006. While her journey since getting off treatment hasn’t been easy by any stretch of the imagination, we are thankful that we have had the opportunity to embark upon that journey. Thank you to all of you for your fervent prayers through all of this. We love you guys and hope you will continue to keep Madison in your prayers!

Since last update Madison has had a couple of Dr’s appointments. In a nutshell, we did the annual cognitive appointment that we go to Duke for as well as a follow up appointment with her Neurologist. We are still awaiting the results from the cognitive testing. The neurologist changed Madison’s medicine again because the first one didn’t seem to be helping her chronic headaches. She has been on the new medicine for a week now and so far we’ve had two bad days on it. So, it will be a while (6 weeks or so) before we will be clear on whether or not it’s working. The more things we try unsuccessfully, the more convincing to the cardiology team that the headaches are directly related to blood flow issues surrounding her blocked veins. One day, we’ll figure all this out.

School has truly been posing some real challenges this year. Madison loves both of her teachers but has been overwhelmed with her homework. She’s been in school for a month now and we are still trying to find our groove. Duke will be providing suggestions to us on October 7, 2008. Madison also has a pulmonology appointment that day. We will update again after those two appointments.

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