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Madison Smith's Website - Viewing Journal - Wednesday, March 18, 2009 4:24 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, March 18, 2009 4:24 PM


Journal

March 18, 2009 9:30 pm

I’m happy to report that we are halfway through yet another good week with Madi! Madison hasn’t missed any school or had to come home in the last two and half weeks for any reason. During this time she’s had two days that weren’t quite as good and although we weren’t sure if she’d make it all day at school, she did! The treatment that she received while in patient combined with the new drug that they added, seem to be working. Last update I reported that we were supposed to be tapering down one of the drugs in an effort to eventually phase the drug completely out. After speaking with Madi’s neurologist, he agreed that since she’s been doing so well that it might make since to keep her on it for a while. So, we’ve postponed the phase out plan for now.

I had the phone conference with Dr. Zeitlin from Johns Hopkins Peds pulmonary department. Overall, she feels that we definitely need to continue to monitor Madi for “Pulmonary Fibrosis” (scarring in the lungs) at least annually. She also suggested that I request a specific test to be run at Duke at our next pulmonary visit. Again, after reviewing Madi’s records she felt that there was absolutely no evidence that suggests that she has Asthma. She has offered to see Madi at any time but also said that if we wanted to hang with Duke and consult her and delay coming until summer that she would work with us on that. I liked her and we will take Madi there, if necessary, but will let Duke continue to follow her until that time. Consulting Dr. Zeitlin just gave me some reassurance that I wasn’t off base feeling the way that I did about the things that Duke has suggested and prescribed. We’ve chose not to give Madi the inhaled steroid that they’ve suggested because, she doesn’t have Asthma, and the inhaled steroid can have some pretty adverse side effects. One of the listed side effects are SEVERE HEADACHES. No thanks, we’ve had enough of those! Dr. Zeitlin supported that decision.

Madison is scheduled for another sleep study and MSLT study at UNC Chapel Hill next Thursday March 26th. Madi goes back to Duke on the 31st and will be seeing the oncology department for her regular follow up and blood work. She will also be seen by Pulmonary. We have absolutely no reason to believe that her blood work will be any thing other than normal. A month ago, while in-patient they drew her labs and they were perfect!

Thanks for continuing to lift our family up! We’ll update again soon.


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