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Madison Smith's Website - Viewing Journal - Saturday, January 10, 2009 5:42 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 - Saturday, January 10, 2009 5:42 PM


Saturday January 10, 2009 11:00pm

Journal

Thank you for all of your consideration and prayers for Madison over these last few weeks. As I write this, Madi is currently asleep in Duke’s pediatric sleep lab. She is here for a sleep study in hopes that it too will provide some additional insight into Madi’s “issues”.

Madison went this week and had a high resolution (ILD Protocol) CT scan. ILD stands for Interstitual Lung Disease for which Pulmonary Fibrosis falls into the category of. On Friday, we returned to Duke to go over the results of the scan as well as the results of the Exercise Stress Test completed on December 10th.

To everyone’s surprise Madison’s CT scan was actually very normal! Fibrosing is another term for scarring. There was a strong possibility that this was what was going on with her due to the chest radiation she had received, the size of the mass that was once in her chest and impact that it had on her lungs, this was all in addition to the high dose chemotherapy drugs she received. The news that this was normal was an answer to prayer. Although we need answers, Pulmonary Fibrosis has no real treatment, it is a progressive disease and the outcome is death. Again, today we are thankful to know what it’s not.

On the other hand, Madi’s Exercise Test yielded some different things. Specifically, her pulmonary function testing was clinically positive for both Restrictive and Obstructive Airway Disease. Her doctor has diagnosed her specifically with Small Airway Disease. He is taking a wait and see approach on officially diagnosing her with Restrictive & Obstructive Airway Disease. He explained that if you talk to different Pulmonologist’s across the country the number that they diagnosis at is varied by about 20%. The clinical range for diagnosis of lung disease; is lung volumes below 80% of the predicted results. So based on that information; it means some doctors diagnose if a person is right at 80% and some don’t diagnose unless the individual is at or below 60% of the predicted result. Madi’s doctor explained to us that he leans more toward 60% or below. Madison’s number is 66%, a far cry from 80%, but not quite as low as the 60% that her doctor diagnoses at.

So at this point, I feel that as long as he has a watchful eye, it will make no difference if it’s diagnosed now or later. I would rather them be sure and take their time and evaluate and re-evaluate Madi than to mis-diagnose her. The doctor was well prepared for us this time, and I now feel confident in him as Madi’s doctor. He had consulted an entire team of EXP’s on Madi’s case and I could tell that what he was saying had been given much thought. That fact made me feel much better.

He has started her on a new medicine; they will read the sleep study results and determine what the next steps should be. It is unclear as to whether the diagnosis of Small Airway Disease is contributory to headaches and fatigue. However, it was suggested that they don’t think so. We still have many questions surrounding Small Airway Disease. As we learn and understand more, we will update.






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