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Madison Smith's Website - Viewing Journal - Monday, April 27, 2009 3:46 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 - Monday, April 27, 2009 3:46 PM


Sunday April 26, 2009

Journal 10:00pm

It’s been almost a month since I’ve updated...Sorry for the delay but you know the saying, no news is good news! That’s right, Madi has continued to do great! She hasn’t missed any school and her head hasn’t hurt. Her energy level is really the best it’s ever been and we’re just enjoying what seems like a really normal, healthy kid. It’s really good to be good! We haven’t changed any of her medicine.

Over the kid’s spring break we took them to see their grandparents in the Midwest. We don’t get home as often as we’d like. Kids really grow up fast but they probably seem to grow much faster when you only see them a couple of times a year. The girls enjoyed a trip to the St. Louis Zoo and the St. Louis Science Center. It was really wonderful to spend time with all the one's that we love. Thanks for letting us crash your normal routines!

It was 85 degrees today which means that the pool is warming right on up. We couldn’t help ourselves; we had to go get in it. They really had a great time and it was really not quite as cold as I thought it would feel! The girls are more than ready for school to get out and summer to begin.

I got a letter last week that said that Madison had been accepted as a camper at Victory Junction Gang Camp. She was really hoping that she would get in this year but often times there is a waiting list and I wasn’t that optimistic that she’d get in the first time she applied. I had a meeting for work at the camp and it is truly a phenomenal place. It’s the mastermind of Kyle & Patty Petty and is a camp for kids that have, or presently are suffering from many different types of illnesses. Madi is very, very, excited about being chosen! In the letter, they mentioned that this year has been hard for them, like many other philanthropic organizations and for that reason that they only selected half the number of children than they did last year. We are glad to be in that number!

Madison was also asked to design the t-shirt for the Sampson County Relay For Life, Kid’s walk. She worked on that today and I think it’s very cool. It was supposed to be something that either a boy or a girl could wear. She wrote, “Survivor’s are shining stars who get their light from Angels gone before them.” She drew five sun’s and seven stars. In each sun, she wrote a different name of a child that she knew that has passed away. In each of the stars she wrote a different name of a child that she knows that is a survivor. She included herself. Although I’m a little partial, I think it’s going to be the best t-shirt ever!

Thanks for keeping us in your prayers!


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