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Madison Smith's Website - Viewing Journal - Thursday, December 4, 2008 5:00 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 - Thursday, December 4, 2008 5:00 PM


Journal

December 4, 2008 11:00pm

Madison had a great day today at both Duke and the UNC Pulmonary Clinic. Today we went to Duke for her regular cancer check up. Her blood looked absolutely beautiful and caused no reason for anyone to think that there is anything going on from a cancer standpoint. We will not go back for another check up with Oncology until April 2009 unless we have a pressing reason to. In a few weeks Madison will hit her three year anniversary of being off treatment. Every year that we move closer to the five year anniversary of being off treatment actually decreases the chances that her disease will return. So three years is a great milestone and we’re happy about it!

The Pulmonary clinic with UNC was wonderful too. They really took their time with Madi and I really felt like they gave her a thorough assessment. They conducted another Pulmonary Function Test for which her results were more favorable than the first one she had done at Duke. They attempted to perform the test that measures that gases that she puts out with breathing (Specifically CO2). However, Madi was unable to complete the test because of the difficulty associated with the test not because physically she couldn’t do it. There was a large degree of precision to the test that was required and apparently it’s tough for some adults to do and they weren’t at all surprised or disappointed that she couldn’t do it. They think we should try it again in a year or so.

The UNC doctor reviewed all of Madi’s films and records from Duke that we were asked to bring. She said that we could repeat the Metabolic Exercise Test but thinks that the decline that we saw on the one from Duke may possibly be coming from “Exercise/Activity induced Asthma”. We’ve had an inhaler for Madi since she was 4 or so but have only used it two or three times ever. She’s never had an asthma attack but was labeled Asthmatic when she was on treatment. When she got a cold on treatment she kept it for a long time because of a compromised immune system and sometimes she would wheeze a little. Per this doctor’s recommendations we are going to try Madi on the inhaler two puffs each morning before school and see if that doesn’t improve how she feels overall. If she’s breathing better, maybe her head will hurt less frequently. If her head hurts less she will likely feel better more often and may not be as fatigued as often. We feel like it’s worth a shot and it certainly won’t hurt anything, especially Madi. I will likely run this by the Duke doctor and see if he too thinks this makes sense. He had suggested repeating the Exercise Test with the chief of the Exercise lab. That test was certainly no piece of cake and a big part of me hates to put her back through it again.

Madison had a bad day Monday with a headache and fatigue but the rest of this week has been pretty good! When she slept so long Monday afternoon, it made my mind go in bad places as extreme fatigue is associated the return of Leukemia. It’s a relief that her blood-work was great today! Sometimes we worry about skipping in for our quick blood draw, expecting everything to look good as it has since she’s been off treatment and then be blindsided by bad news. No matter how positive we try to stay regarding this disease, we will never forget how it felt when she was diagnosed. Blindsided is a perfect word and we hope and pray we will never feel that way again!

Thanks for catching up with us and I’ll update again after I speak the Pulmonologist at Duke again.


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