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Madison Smith's Website - Viewing Journal - Sunday, April 9, 2006 10:21 PM
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 - Sunday, April 9, 2006 10:21 PM


Dear Nona from Allstate, I dedicate this update to you! Thank you for always being so incredibly loyal to our site, even when I haven't updated it. Everyone else also thanks you for motivating me to finally get it done!!! Love ya, girl!

Yes, that's right, it has been almost two months since I've updated. So here goes with what will probably seem like a marathon update. At least we've been feeling like were running a marathon!

First I should start by saying that four kids sometimes five is a big difference from our two children sometime three. Sarah and Amanda who are sisters came to live with us at the beginning of January. We have done a lot of adjusting since then. It seems the weaknesses of our children are their strengths and our children's strengths are their weaknesses. Which at first seemed to equate to everyone is on a different page at all times! However, with great effort we seem to becoming more unified on things. Thank Heavens! We agreed to keep them indefinitely until some stability issues with their mother could be worked out. It was determined this week that they will not be going home until June at the very earliest.

We have been busy celebrating Sarah, Amanda and Maiya's birthdays! Dance has continued to keep Madison busy. I thought I would be smart and sign the three of them up for ball. I'm not sure why exactly I thought that would be a good idea however, I have since decided that it was a BAD, BAD idea. You see, Madi and Sarah are on one team and Amanda is on another. So this means that we conveniently have ball practice at least four and sometimes five nights a week. Oh, and for a special treat, some nights both teams will be practicing. This wouldn't bad if they weren't at two fields across the county from each other!!! I know, I know, welcome to school aged children instead of preschoolers.

Madi, Sarah and Amanda were diagnosed with Mono a couple of weeks ago. The good news was that they weren't contagious anymore by the time they were diagnosed. The bad news was that they were contagious for two weeks prior. They all seem to have their energy back and have been doing beautifully. They will be able to resume sports this week. Apparently, with mono there is an occurrence of an enlarged spleen. This increases the risk of rupturing. As a result, the doctor limited activity for two weeks.

I started a new job at the beginning of the March. I spent nine years with Foresters and left them in 2003. I rejoined them in the Raleigh, NC office. Things are great, I am very thankful that this opportunity came up. I am now in the job that I wanted when we came back from Wisconsin in 2003. The position didn't exactly exist in NC back then.

Madison has been doing great. She was seen at Duke on Tuesday the 28th for her regular visit. She finished chemotherapy in January 2006. Since then we have continued to go monthly. She has been getting IV-IG. This is an immune system boost. Her doctors felt it was necessary for her through spring. On Tuesday, they decided it would be her last infusion of it. So, this means that we will still be going to Duke once a month but from now on she will not be receiving any meds while there. Other than receiving an antibiotic weekends only, she is no longer on any medications. This antibiotic will continue until summer I think. It helps keep pneumonia away. We plan to get her port taken out sometime in June after school is out. She got a port after being diagnosed. They have drawn all of her blood work and administered her chemo through this. It has been a true blessing. For Madison, I think it will be bitter sweet to get it out. She wants it gone but doesn't want them to draw her labs monthly from her arm!

Thanks for Keeping up with us. Please continue to keep our family in your prayers.

A little girl named Tyanna from Benson, NC relapsed about a week and a half ago with Ewing Sarcoma. She is an eight year old that has been off treatment for about a year. At this point her prognosis isn't good and right now she is in a lot of pain. Please keep her and her family in your prayers.


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