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Madison Smith's Website - Viewing Journal - Sunday, March 8, 2009 5:19 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, March 8, 2009 5:19 PM


Journal March 8, 2009 11:00 pm

Madi got out of the hospital on Feb 22nd. She had been hospitalized for 5 days for migraines. The first week she was out, she was extremely fatigued and went to school half days the days she attended. Last week, we've seen a complete turn around and actually had a great week. Not good, but great! We are thankful for this and are counting it as a win! They put her on a new med and kept her on the old one and it is evidently working. We are actually supposed to start tapering the old one down this week to start the process of phasing it out. However, since we had such a great week I am going to talk to the Dr. about just keeeping her on it. It's taken us so long to find something that actually works and I am afraid that we may mess it up by phasing one of the drugs out. I'm a firm believer of "if it's not broke, don't fix it"!

I had all of Madi's records sent to the director of the pediatric Pulomonary Dept at John's Hopkins University Hospital. I wanted to get their opinion of Madi's pulmonary state. I have a phone conference with Dr. Zeitlin (Yale Graduate) on Monday. We have not identified when, but we will likely have Madi seen there sometime in the next few months. I will update more after I have my call with her. Thus far, all I know is that she didn't see any evidence of Asthma. I happen to agree, strongly! Duke on the other hand keeps suggesting that she has asthma which they link to the "Small Airway Disease" that they have diagnosed her with. My experience in this particular clinic at Duke has been less than ideal. Which then I guess it would be more ideal for them if Madi would stay in the nine dots they are familiar with...What can I say, maybe one day we'll have the answers.

Madi has been referred back to UNC to repeat the Sleep Study that she had done at Duke. Madi's Neurologist has suggested this. She see's Dr. Zinn at Raleigh Neurology and our experience there has really been great! Just thought I'd mention it in case any of you need a great peds neurologist.

Thanks for keeping all of us in your prayers. I will update again soon.....

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