Home Sign Our Guestbook View Madison's Pictures View Madison's Journal Archives Contact Us
Madison Smith's Website - Viewing Journal - Thursday, December 11, 2003 10:30 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, December 11, 2003 10:30 PM


Thursday, December 11, 2003 After having a long weekend (last weekend) due to another admission at Duke we have been enjoying what has been a great week. Madi has felt good this week, is off the IV at home, has been eating much better, hasn't been nauseated and so far hasn't had the head and back pain that she had been experiencing. HOORAH!

As mentioned in a previous update, Madi's surgery to insert the portacath went well last Thursday. Following the surgery we were released to go home. Later that same evening we noticed that her right eye appeared a little droopy. It didn't have the same appearance as her left eye. Friday morning it seemed worse as far as droopiness, however it wasn't bothering her in the slightest. There wasn't any other irritation apparent. We called her doctor to get their thoughts on it and they said that it was probably related to the surgery and no big deal. Long story short, we called again that afternoon as it had gotten worse and were told to go to the ER.

Initially on the phone they led us to believe that it was no big deal. When we got to the hospital they checked her and told us that she had Horner's Syndrome. This has to do with a person's neurological system and generally traumas such as tumors in the head, neck and upper chest area cause it. They explained to us that during Madi's surgery that a nerve could have been possibly nicked, causing the problem with her eye. Then they went on to tell us that the chances of that happening were less than one percent. Needless to say they had us really scared. After spending almost ten hours in the ER they admitted Madi at 5:00 a.m.

Her doctors quickly began CT scans of her head, neck and upper chest and thankfully found everything to be 'normal'. So by the process of eliminating all of the other possible causes they came to the conclusion that although the chances of the surgeons nicking a nerve while Madi was in surgery were remote, that was exactly what happened. Great news for all of us! They prescribed us a medication that they hope will help her eye go back to normal. They couldn't promise that it ever would go back to normal but they felt sure that it would with time. Since taking the medicine it seems to be looking better each day. Madi was released from the hospital on Saturday evening.

We had our normal treatment on Monday in which went very well, it just took forever. Her counts were okay on Monday but are expected to be dropping very low this week and next. We joked at the hospital that we are on the weekend and holiday admission plan. Seeing how she was admitted at Thanksgiving then again on another weekend it almost seems that way! It is our goal to keep her healthy so we can stay out of there for Christmas. This time of year is such a bad time for sickness. We hope all of you and your families have managed to avoid all the flu that has been going around and are able to have a wonderful holiday season together. Only 13 more shopping days left to go. Crazy, isn't it!!!

Please keep us in your prayers.

Thank you for taking the time to check our site, please sign our guestbook.