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Madison Smith's Website - Viewing Journal - Wednesday, December 3, 2003 8:00 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 - Wednesday, December 3, 2003 8:00 PM


Madison has felt better the last two days than she has since she has been diagnosed. It seems as though she is really getting back to the Madison that we had become used to.Very chatty, I don't know where she gets it from!

We went for our normal treatment on Monday and everything went very well. They did her blood work and her counts had risen back up to a normal level. We followed up with her regular doctor about being told she had 'Arachnoiditis' and he was able to quickly calm our worries and clear up the confusion from what we were told while she was hospitalized this last time. He explained that Madi's arachnoid gland was temporarily agitated due to so many spinal taps back to back. He assured us that she doesn't have the chronic disease of Arachnoiditis generally found in adults; they just simply called it the same thing symbolizing temporary inflammation. Again, they are blaming this for the headaches and excessive nausea she has experienced. Both doctors concur that this condition should get better each week that goes by that a spinal tap does not have to be completed.

The last CT scan of her chest showed the mass was approximately 30% smaller than what it was 4 weeks earlier and overall it is almost half the size of what it was when she was first diagnosed. Her doctors had suggested that they may take a biopsy of it at some point. Based on a research study that they looked up they have decided that they will not be taking one. Upon diagnosis they called it malignant because they found the same Leukemia cells in the blood within the mass as they did throughout Madi's body. Because Madi is currently in remission there is not any Leukemia cells present in the mass now. The study proved that the size of the mass upon diagnosis whether large or small didn't make a difference in improving or declining the odds that the Leukemia would relapse.

We are still waiting to hear from St. Jude's. We had not originally planned on moving forward with the surgery to insert the portacath until we had heard from them. Based on the new information regarding the mass we have decided to move forward with the surgery. The surgery is presently scheduled on Thursday, December 4th. It is expected to be out-patient surgery without complications.

Madison is still on an IV at home but they have changed it to just at night as opposed to both day and night. Madi is real happy about that change. Being connected, although portable has been a pain for her as the bag is just heavy enough that she can't carry it well. She still really isn't eating well, so I am not sure how long we will have to continue the IV.

Please keep us in your prayers on Thursday as she goes through her surgery. Oh. and by the way, Madi is still Smiling!!!! Sometimes it's contagious!

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