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Madison Smith's Website - Viewing Journal - Monday, September 7, 2009 3:45 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, September 7, 2009 3:45 PM


September 7, 2009

Journal

I know, I know, it’s been forever since the last update! Seems like we have a lot of updates all at once and then nothing for a long stretch. Sorry about that! Life is great at the Smith house!

Madi’s final results from her bronchoscopy came back with no real abnormalities as reported by Duke. Johns Hopkins received a complete copy of the records for that procedure about a week ago and will render their opinion as to whether or not they agree or not. Since the procedure on July 31st Madi has really been feeling quite well. I guess we just needed to get the junk out of her lungs.

Since starting back with school- work her headaches have become more frequent than what we saw during the summer but still have been manageable. We have made some significant changes to schooling for Madi this year. After much prayer and consideration we made a decision to home School her. Each year has been extremely challenging for Madi as she has struggled with fatigue, migraines, a weak immune system, and lung issues, and late effects from chemotherapy. Even still, she managed to make honor roll but it has all come at a cost. The cost came both physically and emotionally. To be clear, this decision was not because of her school… Plain View Elementary is a fine school and we’ve never had a bad teacher. Every single one of her teachers have been wonderful and have impacted Madi’s life positively, for which we are grateful! Thank you! Sometimes, one just has to have enough courage to get out of the boat. We are glad we did! You never know how something will be until you try. We chose a Christian curriculum through Heart Of Dakota Publishing and we absolutely love it! We (Howard, myself & Madi) are very happy with this decision and things are going great!

We chose for Maiya to begin kindergarten at Plain View. We decided that because her and Madi are very different children that they may not fit the same mold. Maiya has a great teacher and assistant and she seems to be enjoying school. We are also happy with this decision and feel like it is the right decision for her at this time.

Howard’s oldest son Matthew and his wife Carolyn gave birth to Landon Matthew on 8/16/2009. He is a happy healthy little guy and joins big brother Aaron who is three. The girls find it rather exciting that they are aunts at the age of 5 and 8.

Life is good, work is good, school is good, everything, is good at the Smith house! Madi’s birthday is Friday, September 11th and we’re pretty sure that she thinks that is good too! Thanks for thinking about us and we love all of you!


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