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Madison Smith's Website - Viewing Journal - Monday, December 1, 2008 1:07 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 - Monday, December 1, 2008 1:07 PM


Journal

December 1, 2008
7:00 pm

We had a wonderful Thanksgiving! This year we spent it in town visiting with Howard’s family. We enjoyed the time off that we all had together. We hope you and your families all did the same!

I heard from Madison’s doctor (Pulmonologist from Duke) the Wednesday before Thanksgiving. Tuesday was actually his first day back at Duke from being out with his wife’s illness. We had been waiting for quite some time to hear from him but at last update we didn’t know when he would return.

He was really wonderful! He took his time with me, and attempted to answer some of my questions. He too said that my concerns were valid concerns with her history. The end result is that he said he would be more than willing to consult with UNC Chapel Hill when we take her there for a second opinion. He also said that he would talk to the Chief of the exercise lab and see when he could evaluate Madi personally, to repeat her tests that she had done at Duke. He said if I hadn’t heard back from him by Wednesday of this week to call back to his nurse and follow up and see when they can get her back in.

Madison is scheduled this Thursday December 4th to go back to Duke for her follow up with her Oncologist. She will have blood work drawn. We are expecting that this appointment will go smoothly. Pray for her continued good labs. Madison will be three years off treatment in January. We’ve gotta get to five years but we are over half way there! Following that appointment we will be going to UNC Chapel Hill for her first appointment with the pulmonary clinic there. This appointment is for the 2nd opinion we are seeking.

The past couple of weeks Madi hasn’t felt her best. Last week she had only two and a half days of school. We pushed, but we made it through them without missing school. I felt like the Thanksgiving holiday would give her some time to catch up on rest and she would be recharged for this week. Through the holiday, she had frequent headaches and has been tired. Unfortunately, the rest that she had during the break wasn’t enough. Today she came home from school at lunch time with a real bad headache and was tired. She really hasn’t had any other symptoms, no fever, or vomiting. She went to bed when she came home and slept for four hours. Hopefully, tomorrow she will feel better and can make it through the day. There has been all kinds of sickness going around the school and our church. It’s just that time of year again and Madi seems to be more susceptible to picking those things up than others.

Thanks for thinking of us, please continue to keep Madison in your prayers. We will update again after her appointments on Thursday.


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