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Madison Smith's Website - Viewing Journal - Tuesday, September 9, 2008 3:01 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 - Tuesday, September 9, 2008 3:01 PM


September 9, 2008 9:00 pm

Journal

Well summer went by way too fast! Isn’t it funny how summer break for the kids seems like it’s a nice long break but then before you even blink it’s already over?

This summer Madison enjoyed vacationing with our family, a trip to her grandparent’s in the Midwest, summer camp, various bible schools and art camps, as well as a camping trip, and time with friends both old and new. By all accounts summer was fun!

As far as a health update, we are still plugging right along with what is “normal” for us. As many of you know this past spring Duke uncovered that Madison has 3 blocked veins running to her heart. Upon a heart cath and attempt to perform angioplasty and stints a fourth blockage was found. This procedure was attempted in June. Although the procedure wasn’t possible Madison has been doing fine in that arena.

We are still trying to arrive at an iron clad reason as to why her head chronically hurts. In June she was seen by a new Neurologist that I was pleased with. He prescribed her a new medicine in an effort to prevent her headaches going forward. While she hasn’t had any real side effects of the medicine, it doesn’t really seem to be making that much of a difference. She will go back next week to that Dr. We will see where things go from there. If the medicine isn’t really working, I would rather her not take it. Who knows what the drug industry will one day later blame on that drug.

Interestingly enough, her headaches seemed to be less after the procedure in the Cardiac Cath Lab. She further had relatively no headaches while at her grandparent’s for two weeks. However since school has started, I’ve already had to pick her up twice for headaches. I wonder if stress could be making them worse. Stress usually makes everything worse, right?

As for school this year, Madison has two different teachers. This will be the first year that she has changed classes. We are extremely pleased with the teachers that she got. Although we’ve felt that way every year she has been in school. Third grade is already posing some new challenges for her which in turn poses new challenges for us. We are working through them and have implored the help of Duke who has provided sound advice to us in the past regarding her education. Chemo kids typically process things slower. They understand things the same as other children their age it just takes them longer to arrive at that understanding. Madison is a very bright young lady and has been on honor roll every grade period since she started school. Although this year she seems to have developed a new sense of frustration with school work and concepts she just doesn’t get. We are really working on this but unfortunately this is all new to me as well and right now I really don’t have all the answers on what should be done. Duke tells us that this is “Classic” of what they see with other kids that have had the treatment she has had. So hopefully, they will have some “classic’ suggestions for me going forward!

Madison started back with her horseback riding today. She’s been missing Kat all summer long and could not have been more ready to get going with this again. Madi had a special smile on her face today after spending time with Kat her instructor and the horse. She definitely didn't want it to end! Horseback riding has helped Madi tremendously with her balance. In fact, this summer she learned how to ride a bicycle without training wheels. This was something that we thought would likely never happen because of her balance issues. We celebrate little wins BIG at the Smith house! Really, I call it little but it was really big for us!

Madison has a couple of appointments next week, hopefully they will yield more answers for us. Please keep Madi, her spirit, and her school work in your prayers!

By the way, Madison will be turning 8 this week. Her birthday is on Thursday September 11th and we have invited 20 yes I said 20 girls over for a swimming party/slumber party on Friday night. Perhaps you should keep me in your prayers too!



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