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Madison Smith's Website - Viewing Journal - Sunday, January 25, 2009 4:22 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 - Sunday, January 25, 2009 4:22 PM


Journal

January 25, 2009 10:00 pm

Things have been going much better with Madi lately. For the last three weeks she hasn’t missed any school or had to come home early because she was feeling bad. The neurologist increased her medicine for her head and the pulmonologist started her on a new med. We’re not completely sure which one has been making her feel better, but we’ll take it!

Last update I typed while Madison was asleep in Duke’s sleep study lab. Madi rested her normal way that night and they were able to get as many hours of sleep to analyze as they needed. She always has been a pretty good sleeper! We do not have those results back yet and do not really anticipate having them until we go back to her Pulmonologist on February 17th.

Her last visit to the Pulmonologist yielded her being diagnosed with Small Airway Disease. Small Airway Disease is also called Chronic Obstructive Pulmonary Disease or COPD. This is a diagnosis that is somewhat rare in children. Her doctor said “Small Airway Disease” he didn’t say COPD but according to what I’ve read the terms are synonymous. The results of her spirometry testing are in line with COPD, not asthma. She had very little improvement when they gave her an inhaler. So anyway, we still have a lot more questions that we will not get answered until the 17th when we go back. I’ve been trying to keep a list of questions. It’s seems like if I don’t keep a list, I’ll forget half of them by the time we get there.

Madi’s doctor suggested that we do regular exercises with her to build up her strength. While Madi is somewhat active I ‘v e had reservations in increasing it too much. My fear is that she could over do it with the blocked veins that she has. Unfortunately, (fortunately for other children) there aren’t any children that her doctors are specifically aware of like Madi that have the same type of blockages that she has. Because they don’t have anyone to compare her to, I’m not completely convinced that having her do rigorous activity is the smartest thing. Specifically, the risks for heart attack & stroke aren’t completely measurable and that is concerning to me.

Per their request we have been doing low impact stretches and exercises for 25-35 minutes each night (about 5 nights a week). Some observations we’ve had are that Madi is willing to do what we ask her to do in the way of exercise, and actually kind of likes it. Over the three weeks we’ve been trying it, she becomes very pale, short of breath, and then she gets a real bad headache. It seems that each night these symptoms surface close to the end of our workout or within five minutes of stopping. Those symptoms seem to go away within 30 minutes to an hour but only when I have her lying down and get her to be completely still. These are also the same symptoms that she had when doing both Exercise Stress Tests. We left a message for her Dr. regarding this matter but have not heard back from him. I’ll update as I have new things to report.

Please pray for Madi’s friend MacKenzie “Z” Baysden. They met at camp this summer. Z has Rhabdomyosarcoma and week before last they found another new tumor. This one is in her esophagus and now makes at least three in her little body. She’s been on aggressive Chemo since the summer and this news is truly disappointing. Z is a fighter and an amazing little girl but really needs our prayers! Thank you in advance for lifting her and her family up!

Her website is www.caringbridge.org/visit/mackenziebaysden


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