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Madison Smith's Website - Viewing Journal - Thursday, October 20, 2005 8:18 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 - Thursday, October 20, 2005 8:18 PM


Since last update we have had an interesting couple of weeks! Things seem to be getting back on track now though.

It all started with Madi having a little fever and another all nighter at Duke's ER on Friday October 7th.

We were there all night she had a fever and a headache but no other real symptoms. Her counts were found to be great so they sent us home after she received IV antibiotics around 5:00 a.m for our convenience! They told us she had to come back on Sunday for another round of IV antibiotics.

Sunday she got her second round locally so we would be able to attend church. All weekend Madi seemed back to normal. Then, Sunday night she spiked a high fever for which we called back to Duke. When we called they checked the computer and then came a pause when they said “Oh, her cultures from Friday are positive for Staff, you need to come right now, she is a direct admit.”

The ER is supposed the patient immediately upon a positive reading from a culture. Somewhere we slipped through the cracks and weren't called so it was actually a good thing that she did spike another fever or we would not have called.

Madison was in-patient at Duke from Sunday the October 9th through the 13th for which she was being treated for a Staff infection in her port-a-cath. She received IV Vancomycin 3 times a day while in-patient and then had to come home with an IV for 5 days. We finally finished up the IV on Monday night. Madison was ecstatic to be done with it!

Madi had a re-action to the drug that they were giving her so they had to pre-medicate her with a lot of Benedryl prior to receiving the IV. The Benedryl made her real sleepy but once they started it she didn't have any more reactions. We call her our little exception girl! Madi seems to have a lot of adverse reactions to a lot of drugs. The list is growing each month it seems.

This unexpected 5-day admission to Duke really threw us for a loop. She has been doing so well, we wouldn't have seen this coming! Since she was diagnosed, she had never had a positive culture. It would have been more expected when she was on the most aggressive therapy in the beginning and constantly was suffering from a crashed immune system.

I guess stranger things have happened! Anyway…Please keep us all in your prayers. Prior to leaving the house to be admitted Madi crawled up in her daddy's lap and said “daddy, I'm tired of being sick, I just want to be like everyone else” as she started to cry… This was really tough for us. It was a first time she had ever really expressed anything like that. What do you say? We agree were tired of her being sick and we just wish she could be like any other kid. September marked that we have one more year of treatment. We can't wait for that day!


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