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Madison Smith's Website - Viewing Journal - Monday, June 23, 2008 11:20 AM
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, June 23, 2008 11:20 AM


June 23, 2008 5:00 pm

Hope all of you are doing well. We are happy that school is finally out! We had a great school year but like most of the teacher’s, we were really ready for a break! We have lots of fun summer plans that include, vacationing with family, summer camps, and hopefully lots, and lots of swimming! Our pool should be done with any luck in the next week or so. It won’t be too soon for the kids! We are looking forward to the family fun that the pool will offer.

Last Thursday I went back to Duke and sat down with the Hem/Onc doctor that diagnosed Madison initially as well as our very favorite nurse practitioner Nicole. Madison wasn’t present for the meeting and I was able to discuss my concerns regarding her latest “issues”. I left there feeling much better than I did when I went there. Although, I don’t know much more than I did when I went, I left there knowing that Dr. Rosoff was going to have Madison re-assigned back to him and knowing that made me feel like we were in good hands. Dr. Rosoff has been doing this a long time, he was the former chief of the department and I just trust him.

He is referring her back to a different Neurologist and when we go back in July he will be running six various blood tests on Madi to check for rare clotting disorders. He also has the clotting specialist on the team examining the findings from Madi’s cath on June 5, 2008. He said that the things that he will be checking for are very, very rare and it is unlikely that she has any of those disorders. He mentioned compared to other healthy children Madi’s age she probably has five or six more risk factors than what they do but even still these disorders are rare. He said that if she does happen to have one of them, it would be much better for Madi if we find it now instead of during her adolescence years. Apparently, those disorders don’t have as favorable outcomes if it is found around the time the body begins to mature. I am thankful for the entire Hem/Onc team. There have been several changes to the doctors on the team since 2003 but the nurses that were there when we went there for the first time are all for the most part, still there. Madison truly loves all of them. They were a big part of the reason Madi liked going there even though sometimes the visit wasn’t so great!

Madison has been feeling pretty good. Her headaches are still present but by my estimation they seem to be less in frequency. It seems like that since she went to the cath lab and had the wire put through her vein that it must have helped somehow. I don’t know, but it seems nice that her head hasn’t been hurting every single day of her life since June 5th. She still seems to be fatigued pretty easily though. Today we went to an amusement type park and although she was having fun by her face she looked like she didn’t feel very good. We have to be careful not to over -do things with her because sometimes when she’s having fun she won’t tell anyone that she actually feels bad.

In a couple of weeks Madison will be going to Kamp Kaliedescope. This is a camp that is put on by Duke Hospital. She is looking forward to this camp. It is more of a rustic type camp as opposed to Fru Fru. Madi has always been a girly girl and I am hoping that she will go and love it! I’m afraid that if it’s too much like roughing it that she will want to come home. I guess I will see. I have been surprised many times by my children!

News from the 2008 Man & Woman of the Year Campaign

I have a special & important message to get out in reference to the 2008 Man & Woman of the Year Campaign! With all of your help, The Leukemia & Lymphoma Society reached their goal of raising the millionth dollar since the campaign’s inception. Special congratulations go out to Dr. Mark Yoffee and Robin Smith for winning the official title for 2008. It was my honor to be one of twelve candidates that had a hand in raising more than $329,000 in only eight weeks for The Leukemia & Lymphoma Society! Thank you to all of you for giving to this awesome cause!

A special thank you goes out to Plainview Elementary School, Bethesda Friends Meeting, & Foresters for organizing events/campaigns that generated just about half of the total money my campaign raised, which at last count was $21,400! I also need to thank all of the businesses that graciously donated auction items for the final auction. Those auction items generated an additional $2400.00 for The Society that would not have been possible without you. Specifically, Arts of Love,The Beaufort House Bed & Breakfast, The Blue Water Spa,Beasley Contracting,The Carolina Hurricane’s, Duke & Coach K, Prismaflex , Just Claying Around, and Skin Sense A Day Spa. Thank you to the Dunn Daily Record, The Smithfield Herald and Sampson Independent for running front page articles. Thank you to NBC 17 and Kim Genardo for being such an awesome host to Mrs. Shannon Best and Mrs. Allison Godwin’s classes from Plainview Elementary! Thank you to the students in those classes, you really earned that trip! I hope it was fun! You guys have now had your 30 seconds of fame with your Wake Up call that aired on Friday! We would like to thank both of our employers NC Farm Bureau and Thompson Financial Group for all of their support for both this campaign and for Madi and her plight in general!


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