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Thank you for taking time to inquire about Madison and how she is doing. Madison was diagnosed with high risk T-cell Acute Leukemia Lymphoma 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. We've come this far for a reason and we will get through this new hurdle. 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, August 7, 2008 5:40 PM


Journal
August 7, 2008 11:00 pm

We have good news! Madison went in for her scheduled Hem/Onc appointment July 31, 2008 and all of her blood work was great! This was the visit that they were not only doing her regular follow up blood work that they always do but additional testing for 6 different auto immune/clotting disorders that are rare but aren’t good if you have them. This was great news for us.

Madison was referred out to a new pediatric neurologist outside of Duke. We were anticipating a four month wait for her first appointment but were pleased when we received a call two weeks ago with an opening for Madi. We had a great appointment with her new doctor. He was very thorough and has prescribed Madi a new medication to help give her some relief from her headaches. So far she is doing pretty good with this new med. She will go back to this doctor in about a month. We are hoping that this medicine she is now taking will just be temporary and not a permanent med.

Both Madison and Maiya left last weekend to spend two weeks with their grandparents in the Midwest. Madi was very much looking forward to this time. When she comes back she will have about ten days before school starts. They have been doing art, swimming, the park, the zoo, and hanging out with family. It’s been quiet around here and although sometimes it’s pretty nice to have a break, we are definitely missing them!

Howard and I are going to take a few days and spend some time in the mountains. We are looking forward to this. Thank you for your concern and consideration for our family. Please continue to keep us in your prayers.



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