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Madison Smith's Website - Viewing Journal - Sunday, September 17, 2006 10:25 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, September 17, 2006 10:25 PM


More and more time has been elapsing between these updates. As always, I’m sorry for the long delay but praise God that we don’t have terrible frequent things to write about!

Madison started first grade this year and got a wonderful teacher by the name of Mrs. Godwin. Madison really likes her and I think Madison will really do well with her. There are four first grade classes at her school but she still had a good number of children in her class that were in her class last year.

When Madison was diagnosed in 2003 with Leukemia she was three years old at the time. Duke sent her to have a study done that measured where she was academically, socially, and developmentally. They explained the reasoning for this was to measure where she was at the time chemo started. They said that it would be completed again every couple of years to determine whether or not the chemo has had any effect on her cognitive abilities. Almost every drug she received from 9/2003- 1/2006 had some sort of possible side effect that could cause mental slowing or cognitive delays. We were delighted back then to learn that she scored in the high above average range for all of the categories. We were happy about this because this meant to us that if she did have those “side effects” later that she would still likely be in the average range.

This summer we had the same test performed. They score the second test within a range of points compared to the 1st test. So let’s say Madi scored within 20 points from her previous score they would consider her to have had no change because it would still be within the previous range. We were disappointed as Madi scored outside (below) of her previous range. They noted a marked decline from before but she is still considered above average. Because of where she started they didn’t make any recommendations but we have been working with her a little bit more on things at home. This was a big disappointment for me. I was kind of thinking she’s been through enough! I don’t want her to struggle through school. Right now, she’s not at all. In fact she’s already reading quite well for a first grader! I guess what stays in the back of my mind though is she’s only in first grade. We have a long way to go. Please pray about that.

Madison had a pretty bad cough for about two weeks. In fact, it was one of those coughs that if you are out somewhere and you hear a child cough like that, you turn around and look to see if the kid is dying or if the parents even care. She had a fever with it for a couple days. She also missed one full day of school and came home early two days. As a precautionary measure I took her up to Duke to have her lungs x-rayed, all was fine. Madi was diagnosed with Asthma back in 2004 but it only rears its head when she has a cold. We just wanted to be safe. Madison’s regular appointment at Duke was Thursday. They prescribed her another antibiotic for an ear infection. The one they gave us a week prior cleared up her cough but allowed an ear infection to surface. GO FIGURE!!!


Duke is scheduling Madison with an Orthopedic. Madison walks slightly slumped over. When we tell her to straighten out she says “it hurts”. It is completely possible given all the spinal taps that she has had. Sometimes though, it seems that it could have more to do with her present attitude. Nevertheless, we shall find out.

Madison had her sixth birthday on September 11, 2006. We celebrated the occasion by having a sleep over complete with 12 girls ranging from four-eight years old. I know, I know a little ambitious for my first sleep over as a mom but it was great. I would totally do it all again. Madison’s grandma paid for the Tumble Bus from Elite Gymnastics to come out as entertainment for the kids. They thoroughly enjoyed jumping and bouncing around on the bus like a bunch of monkeys. I think it kind of wore them out too. The kids enjoyed a hot dog and macaroni & cheese supper and designing their own cupcakes. We finished everything off with two movies and the girls were all asleep by 11:00 p.m.

Thanks for still keeping up with us. Please don’t stop praying for us. We are nine months into to our five year journey. Once Madison is off treatment for five years with no re-occurrence she will be considered a Leukemia Survivor. We love all of you and are extremely grateful to know you still care.


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