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Madison Smith's Website - Viewing Journal - Sunday, May 14, 2006 1:54 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 - Sunday, May 14, 2006 1:54 PM


Isn't amazing how the weeks turn into months and months into years! I am completely amazed that school will be out in four short weeks. It seems crazy to me that Madison has already almost completed her first year of school. In some ways it seems possible but in a lot of ways it seems as though, I just had her! CRAZY…Mama said it would be like this!

Things have been going great! For the exception of a few nasty colds (Howard & I) everyone at the Smith house has been relatively well. We are both much better now. Madison had a fever on April 30th and spent the night at the ER getting her routine IV antibiotics. Everything checked out. We just had to follow normal protocol (IV antibiotics) because she still has a port surgically implanted underneath her skin. They give the antibiotics in case she happens to have an infection the line that is connected to the port. Madison is still considered immune compromised. I guess they will consider her that until she is nine months to a year off treatment. Although she is still labeled that, her immune system is now just a little under a normal person. She is in no way compromised like she was while on aggressive chemotherapy. Hooray for that! It doesn't seem like it was that long ago when her counts hit rock bottom and we really didn't leave the house with her. I am so thankful to be passed that.

Madison is scheduled to go back to Duke on the 23rd of this month. She will be doing an academic evaluation. This will measure the effects that chemotherapy has or hasn't had on her cognitive abilities. We haven't noticed any real changes but Duke plans to evaluate her annually. A lot of the drugs that she has had have the possibility of causing mental delays later. The side effects only happen in some cases. We hope that we won't have to deal with this but if we have to, it pales in comparison to the alternative of not having had the drugs. Those very drugs that can be so damaging, gave Madison life. We are thankful for them.

Madi will also be having a pre-op visit on the 23rd as well. We are planning on having her port taken out on June 21st. Once her port comes out we can then start treating a fever as any other parent would. (Free from an ER visit) HOORAY FOR THAT TOO!

We have all been very busy with ballgames four nights a week and ballet once a week. Madison just had her dance recital last weekend. She did a great job and looked incredibly beautiful. There is only one more week of dance until it is out for the summer.
T-ball will be over in June. I got a little more than I bargained for signing them up. I was thinking maybe one game a week. This whole four nights week at the ball fields is…well…wearing me out! June really isn't far though, right?

The only other drama I can think of is that we are in search of a new nanny. Ashley is moving out of state. We were planning on her working through June or July until we found her replacement but last week we nixed that plan. Anyway….we wish Ashley well and will miss her. We have been interviewing aggressively to find her replacement. In the mean time a lady named Jackie Holt from church is filling in for us. The arrangement is working beautifully for both her and I.

Thanks for keeping up with us. Please continue to keep all of us in your prayers. If you still frequent this site and have never or haven't in a while please sign our guest book so we know who's still out there. We love you all!


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