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Madison Smith's Website - Viewing Journal - Friday, October 24, 2003 9:00 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 - Friday, October 24, 2003 9:00 PM


Madison is officially in "REMISSION"!!!!

Remission Definition: A disappearance of evidence of a disease, usually as a result of treatment.

The bone marrow and spinal tap that were done on 23 October 2003 revealed zero leukemia cells present. This day also marked the end of the "Induction Period" which is one of the three phases of treatment that she will go through over three years. The CT scan taken of her chest today showed that the mass is still there but has made marked improvement. The results today have given us a better prognosis for the future.

High risk Acute Leukemia Lymphoma is somewhat notorious for returning or "relapsing." Patients that are diagnosed with this have a 60%-65% chance for being cured for the long term. IF or when it does relapse is the time that bone marrow transplantation is discussed.
Madi's doctors have recommended that we save the cord blood of the baby we are expecting as it will likely be a perfect match for her if she ever needs it. They said that the cord blood is actually even better than the bone marrow of a matched donor.

On Monday we will be meeting with her oncologist to discuss when and how often her treatment will be during the "Consolidation Phase" which usually lasts anywhere from 6-9 months. Once the "Consolidation Phase" is over we will be begin the "Maintenance Phase" which will last the remainder of the three years.

Madison is tentatively scheduled for outpatient surgery on Thursday for port placement. It is supposed to be a relatively simple procedure where they put a line underneath the skin in her chest. They do this so her doctors will be able to administer drugs or fluids to her as needed throughout her treatment without the necessity of sticking her each time. THIS IS A GREAT THING!

Madison has continued to do well at home and has been getting stronger each day. Her doctor's have labeled her as a "tough cookie." She has been a true fighter through all of this and her spirits are great despite everything that has gone on. We are where we are today because of all the prayers that have gone up. Thank you again for all of the support that each and every one of you have shown our family. We will update this again next Friday. By then we should have the surgery behind us and a clear picture of what her treatment will be.

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