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Madison Smith's Website - Viewing Journal - Saturday, March 22, 2008 4:29 PM
Thank you for taking time to inquire about Madison and how she is doing. Madison was diagnosed with high risk T-cell Acute Leukemia Lymphoma 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. We've come this far for a reason and we will get through this new hurdle. 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, March 22, 2008 4:29 PM


Journal

March 22, 2008

Happy Easter to all of you! We hope this Easter finds you together with the one’s you love.

Since last update Madison had her appointment with the Cardiologist at Duke regarding the hole in her heart referred to as PFO which stands for Patent Foramen Ovale. Her appointment was February 27,2008 and although we really don’t know any more than we did when we went, we still felt like it was a great appointment.

Dr. Rhode’s isn’t convinced that the PFO is what is causing Madison’s headaches. He said before we discussed more about that he wanted to make sure it was something that could be related to a blood flow issue. I felt like he took his time with us and was really not flippant in his responses. I really appreciate a non-flippant approach. Sometimes I think Dr’s lose sight of the fact that although the things they talk about are common place to them, a parent doesn’t feel that way when it’s their child. He asked if Madi had any really bright or pronounced veins in her chest or neck area. When I showed him that she did he then humbly admitted that he hadn’t had sufficient time to review her extensive records. In light of the fact that she once had (now gone) a mass that encompassed her upper chest cavity that was shutting blood flow off to the Superior Vena Cava he wanted to review all that history in great detail prior to ordering more tests for Madison. He mentioned that before we talk more about the hole in her heart he wants to be sure that she doesn’t have any kinks, obstructions, or blockages in those veins that could have been pushed around by the mass that she once had. Again, his approach was very logical to me and I really felt good about our appointment.

Since then, I have not yet heard what his thoughts are after reviewing her records nor what tests he will be ordering. We told him that ideally whatever tests he orders we could do them on April 7th as that is the next time we’ll be there anyway for her HEM/ONC follow up. He said that should be fine. I e-mailed him a few days ago and expect to hear back sometime after Easter.

For the exception of daily chronic headaches Madison has been doing quite well. She isn’t falling anymore like she was and we believe that the physical therapy she is taking three times per week is continuing to help her. Madison will be spending spring break with family in St.Louis. She has really been looking forward to the visit. We will update again as soon as we have new information.

P.S. Madison has been picked by the Leukemia Lymphoma Society of Raleigh to be the “Girl of the Year” I will be running for “Woman of the Year” in an effort to support Madi in raising money for the society. Research in leukemia provided by such agencies as this is probably one of the biggest reasons why doctors have been able to treat leukemia more effectively than in years past. God’ grace and treatment made possible from research is why Madi is alive today and able to be “The Girl of The Year”! We will be reaching out to all of you for your support. Thank you for your consideration!


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