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Madison Smith's Website - Viewing Journal - Sunday, July 5, 2009 1:29 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 - Sunday, July 5, 2009 1:29 PM


Journal

July 5, 2009

We’ve been home exactly a week today from our trip to Baltimore. Madi has really had a great week. This week has probably been the best week she’s had in the last six or so. For folks that haven’t been here in a while, I’ll quickly bring you up to date.

Madi had a persistent cough that began around the middle of May. It was much like a bronchitis type cough. It continued to get worse to the point that she was having breathing issues which then breathing treatments became necessary through the day and night. She had no other symptoms and was treated with two different antibiotics. The second was prescribed at the Duke ER where they said she had pneumonia. That was two weeks ago Friday. The trip to the ER was necessary because she had spiked a fever.

The following Wednesday, we left for Baltimore and although her fever had been gone for several days, she didn’t seem to be any better. Madi was seen by a pediatric pulmonologist while we were in Baltimore. This doctor was very thorough, she prescribed a third high dose antibiotic, and an inhaled steroid and checked Madi for Cystic Fibrosis. The Cystic Fibrosis test results came back negative. This was certainly an answered prayer!

She diagnosed Obstructive Lung Disease and said that Madi should have a bronchoscopy when her current lung infection is better. The bronchoscopy will ideally shed some light as to what exactly is causing the obstruction in her airway. This doctor will be forwarding her clinic notes to Madi’s pulmonologist at Duke. Madi has a few more days of antibiotic left. She is asymptomatic at this time. The doctor in Baltimore and I will talk again over the next couple of weeks. Specifically, she wants to see if Madi’s symptoms come right back once she gets off of the antibiotic or if she stays well.

We have not yet spoke to Madi’s Dr. at Duke since we’ve been back but he knows that she was seen and treated at the ER for Pneumonia. We will likely correspond with him this week. Right now we aren’t completely sure where (Duke or Johns Hopkins in Baltimore) or when her bronchoscopy will be but it will be before school starts back and for convenience purposes, Duke would be our preference.

Thanks for your prayers and we’ll update again soon!





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