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Madison Smith's Website - Viewing Journal - Saturday, November 15, 2003 7:00 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 - Saturday, November 15, 2003 7:00 PM


We apologize for the extended delay in updating Madison's site. Things have been pretty hectic just from going back and forth for treatments. We will try to update this more frequently to keep all of you in the loop of what is going on with her.

Since our update on October 31st there really hasn't been a significant change in anything going on. We refer to it as the 'hurry up and wait' state of being that we are beginning to get used to, although we still find it frustrating.

Madison has still not had the surgery to insert the portacath yet. Her doctors haven't really mentioned a proposed date to reschedule. The last CT scan of her chest was done more than 3 weeks ago and there hasn't been any type of X-rays done since. Before they reschedule the surgery they will have to order another CT scan & as of yet it is not on the schedule. We are unsure as to what the size of the mass in her chest is now. We are approaching the '3 to 4 week' mark that her doctors had mentioned to re-evaluate the situation.

When Madi started going to Chemo one day a week, they changed all of the drugs from what she had originally been taking. This round of chemo so far has proven to be a little tougher on her. As a part of her regimen, we have been going to Duke on Mondays for the drugs that they administer to her, she has been getting shots at home four days in a row and then off for four days, in addition to taking another drug in the pill form at night. All of these drugs are chemo.

With the new treatment, she has been pretty sick from it. So far we have been unable to pinpoint which drug is the culprit. She has also been nauseated on days sometimes 3 days after receiving treatment. This concerns us, but doesn?t seem to concern her doctors. We were concerned because when she has been sick so many days after treatment it has always been just in the morning. Sickness, just in the morning is really how everything presented itself to begin with.
We are still awaiting a full report from St. Jude Children's Research Hospital as to their opinion on the mass and the overall suggested treatment. We hope to hear from them this week but then, we hoped to hear from them last week too!!!! Well, what can we say?

Madison's counts have been down pretty low this week which means that she is extremely susceptible to infection. So as a result, we have been home for most of the week and weekend. Her counts should begin to go back up around the first of the week.

We have begun our search for a new nanny, as her former one is no longer physically able to care for her. Please pray that we find the right person for our family.

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