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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 - Tuesday, November 18, 2008 4:22 PM


Journal

November 18, 2008 10:00 pm

Since last update, I have received a copy of both of her tests that she completed at Duke’s pulmonary clinic. I have still not heard from the Doctor in reference to answering the questions that were sent to him via e-mail. I have not heard from anyone in that office. The doctor we’ve been waiting to hear from has been out a considerable amount of time over the last few weeks due to an acute condition that arose with his wife that required some sort of surgery and a lengthy hospital stay. I am really unsure if he is back or if she’s okay. We certainly hope she is and know what it’s like to go from normal to not so normal in a blink of an eye.

Today, I spoke with Madi’s pediatrician and discussed her results, our un-answered questions, as well as our concerns. At this point she feels that with Madi’s history it would be wise for us to have another opinion. She felt our questions were very valid and although she didn’t have specific answers she agreed that someone should be able to give more answers than what we received thus far. Her validating that our questions were fair and not un-reasonable made me feel better. I like her and value her opinion. Had she said she didn’t think we needed to pursue this, I would have taken her advice.

She is referring Madi to the Pulmonary Clinic at UNC Chapel Hill. We go to church with two different families whose children have serious chronic conditions that are seen at UNC’s pulmonary clinic. They have been happy with them. We will start there and depending on their opinion will decide what the next steps should be. (Specifically, whether or not we should have her records sent to another facility outside of the state of NC or watch closely for changing symptoms.)

Maybe all specialties at Duke are not created equally. Maybe we were spoiled by the PEDS HEM/ONC team at Duke. Our experiences with that clinic have really been wonderful! Madi looks forward to going there and seeing all of them. Having said that, they are evidently doing something right!

Anyway, I will update as soon as we have more news to report. Her pediatrician is going to try to get us an appointment at UNC within the next couple of weeks and will likely call me tomorrow with that info.

Please keep us in your prayers!


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