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Madison Smith's Website - Viewing Journal - Tuesday, July 11, 2006 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 - Tuesday, July 11, 2006 4:29 PM


A lot has been changing at the Smith house! Things are getting back to normal, I think. Things have been outside of the normal run of the mill household for such a long time sometimes I wonder if our definition of normal is now distorted!

Hmmm…..lets see, where should I start? Well first, we were able to find a new nanny. Her name is Debra and she has been with us since June 1st. The kids really seem to like her and she has definitely found her groove. Coming to work for us was a welcomed change for her. She had been working in a daycare as the head teacher for the three year olds and had as many as twelve children in her care at a time. So for her four sometimes five was a breeze.

Madison officially has her port out. She had surgery on June 21st for which it was removed. The surgery went well and Madison's incision is healing nicely. She had her port surgically implanted in December of 2003. The port allowed her doctors to administer her chemotherapy and other drugs without going through her vein. Her port was truly a blessing. Having it out really marked a triumphant end to a long battle.

Sadly, Tianna, an eight-year-old girl from our community passed away recently. She was diagnosed with Ewing Sarcoma in 2003 and finished treatment in 2004. She had been doing wonderfully however relapsed around February this year. Tianna was a beautiful little girl that will be missed greatly by everyone she's ever known. Although our family knows her family only as acquaintances her visitation was extremely tough for me. It was crippling for me to look at her and know that five months ago she was fine and four months after re-lapsing she was gone. Childhood cancers are a terrible thing and believe me I know this but when you attend a visitation of a child that the odds weren't in their favor, it's very real and it's very in your face. Please pray for Tianna's family and their healing in the wake of their great loss.

Well the end to a seven-month stint of being foster parents to two little girls came about two weeks ago. Amanda eight and Sarah six came to live with us back in January 2006. From January to July their mother was working on creating a stable environment for them to live. The girls missed their mother tremendously and were very excited to be able to go back with her. We think a lot of those two girls and are happy for both the opportunity to be there for them when they needed us and their opportunity to go home with a fresh start with their mom. Children belong with their parents. It is our hope and prayer that what happened will never happen to them again. How terrible it must feel to be taken from you parents. As a child, it must feel really helpless.

Since their departure our family has been able to get back to normal, which has been nice. I have seen a positive behavioral difference in both of my girls since they went home. The competition is no longer there, which is GOOD for me! The kids have enjoyed time with us that didn't have to be shared but they have likewise missed the girls tremendously. Playing is a lot more fun when there are extras to play with!
We took a few days and went to Williamsburg, VA. We went to Busch Gardens and Watercountry. The kids had a blast. We camped in a tent as opposed to staying in hotel. We've done that a few times now with the kids and they really seem to enjoy it. The campground had a great pool and playground. We cooked most of our meals and had a great time. We thought the kid's favorite thing would be Busch Gardens or Watercountry but we were wrong. The whole family had the most fun in the pool at the campground. Isn't funny how that works? Kind of like the box at Christmas time instead of the expensive toy.

Please continue to keep all of us in your prayers. We are thankful for the prayers that you've sent up for Madison and our family. The power a prayer can change things. Look where we are today and where we have been. That holds true for all of you and any struggles big or small that you may be facing.

Thank you for your continued support.


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