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Madison Smith's Website - Viewing Journal - Saturday, November 19, 2005 10:12 AM
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 - Saturday, November 19, 2005 10:12 AM


Since last update we have had a couple un-expected trips back to Duke! A couple weeks ago she had to go in for a UTI. She was treated and released (no big deal) and is now much better!

We spent the better part of yesterday up there again trying to figure out why she is has been having severe headaches that are coming and going. After completing a CT Scan they confirmed that her brain looks great but still don't know where the migraines are coming from. She is now scheduled for an MRI on December 1st. She has done better today, pray that the headaches will stay away. If she is still having headaches by Tuesday they are going to do a spinal tap early. Hopefully that will not happen.

We went in for our regularly scheduled treatment on November 8th everything went really well. While we were there we learned that Madison should finish her chemotherapy in January 2006. Yes, I said January 2006! All along we have been under the impression that her treatment would be three full years. They said that the standard treatment for her disease is three years for boys but not for girls and barring anything unforeseen she will finish in January!

Needless to say we are excited about this news! We got that news on a Tuesday and the wild thing was the day before I had asked Madison if I could give her a magic wand and she could wave it and change anything about herself or her life what would it be? She paused for a moment and said “well, I wouldn't have a port anymore and I wouldn't be sick anymore.”

So the very next day we were able to tell her when her wish could come true. It was awesome and the smile on her face was worth a million bucks! She was actually asleep when her doctor told me the plan so I shared it with Madi over lunch after her treatment.

As of now the plan is that we will go December 7th and she will have to have a spinal tap. Then January 3rd she will go in for her last chemo treatment and a few weeks after that they will do her last bone marrow test and if all is well a few weeks later they will take out her port.

We will have to go every month for the next year for blood work she just won't have to have any drugs! All of this comes to us as great news but as her parents we are nervous about her vulnerability off treatment. Duke says that this is a natural feeling shared by most parents who have had children that have gone through this. I'm sure the more time that goes by the less nervous we will be.

Please continue to keep all of us in your prayers!

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