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Madison Smith's Website - Viewing Journal - Friday, October 20, 2006 4:50 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 - Friday, October 20, 2006 4:50 PM


October 18, 2006

Doesn’t it seem crazy that fall is here and Thanksgiving is a little over a month away? It always amazes me how quick the years slip by. Fall for us means the infamous State Fair which happens to be going on this week. We will be going to the fair this afternoon. As long as Madison is at school until 11:30 she will be counted present for the whole day. You see, we learned several years ago that we do not, never, ever, and I mean NEVER, EVER want go to the fair on a weekend again! On the weekends it is so crowded that you literally have to stand in line to walk around. No Thanks!

We will be going with the Partin family. They live near us, have two daughters. Sophie their 4 year old has about eight more months of chemotherapy for Leukemia. She was diagnosed in 2005. She is responding quite well to treatment. We really enjoy their company and friendship. Randall is a minister at a local church here in the community. Sadly for us, his ministry will be taking their family to New Mexico next summer. We don’t want them to leave but at least then we’ll have a good excuse to go to New Mexico.

Madison had her monthly check up at Duke last week. The check up went very well. All of her blood work has been great since getting off treatment in January 2006. So far, so good! She will be followed by Duke monthly for the first year off treatment, bi-monthly for the second year, then quarterly for the third and so on. Five years off treatment is the magic number.

We also took Madison to the orthopedic doctor the same day as her other appointment. We decided to have her checked out because she walks rather slumped and when we ask her to stand up straight she says it hurts. I thought it would be good idea to just have her checked because you never know what’s going on. I personally didn’t want to find out when she’s in high school that she had something during childhood that had they caught then, they could have fixed prior to her growth stopping. Anyway…the orthopedic took some X-rays and found Madison’s spine towards the back of her neck to be curved significantly to the right. They aren’t sure why but looked back at other X-rays taken in 2004 and saw that they didn’t show this. They have scheduled Madi for an MRI on November 7th and she is now in physical therapy twice a week. They wanted her to wear a brace but I asked that they hold off on that until we get the MRI back.

When Madi was first diagnosed she was in the ICU on life support for about a week and a half. When she came home her body was naturally very weak. Her body was further weakened by two and a half years of chemotherapy. Thinking back Madison has probably has not walked completely straight since being diagnosed. We never thought much about it while she was on treatment because she was so tired and so weak. We really started to notice it once treatment ended. I guess time will tell what’s going on and what we can do about it. One thing for sure, I’m glad we found this out now instead of later.

We will be going back to Disney in November. Little Sophie will be getting her Wish for Make A Wish and her family will be there at the same time. We are really looking forward to a break!

Madison’s Grandma and Grandpa will be coming to visit over Thanksgiving and she is really excited. Her other Grandma came last month and they really had a good time. We miss all of our family from Illinois and Missouri and really enjoy the visits.

Thanks for keeping up with us and please continue to keep our family in your prayers!



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