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Madison Smith's Website - Viewing Journal - Monday, July 14, 2008 6:39 AM
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 - Monday, July 14, 2008 6:39 AM


Journal

July 14, 2008

Well Madison survived Camp Kaleidescope! We dropped her off to meet the bus on Sunday July 6th and returned to pick her up from the bus on Friday July 11th. Yes she did stay the whole time. I was especially thinking that she wasn’t going to stay as result of the terrible weather that we had all last week. At camp they were kind of roughing it in cabins without electricity and they were the screened in type. I was convinced with all the lightening and all the thunder that she would be scared and want to come home. The storms we had last week were scary for most adults. I personally wouldn’t have wanted to be where she was close to the lake in the middle of the storms.

Madison said that she had a good time and enjoyed it. However, when I asked her if she would like to go back every year, she replied, probably not. So then I asked if she ever wanted to go back and at this point she says no. I have not been successful and pulling out a reason why she feels that way. Oh well, she certainly doesn’t have to go back.

The counselor at camp said that Madison had a pretty good week but said that “she had her moments”. Specifically, she mentioned that they gave her Tylenol several times throughout the week for her head. She also mentioned that it was a lot of walking and Madi struggled to keep up and that she was a little homesick like the rest of the kids. One thing is for sure though, Madi did make some new friends that I’m sure she will keep. I hope to post camp pictures later this week. Thank you to all of our friends and family that sent her mail. She got a ton of it and really enjoyed it!

Madison will be going back to Duke on July 31, 2008. This will be her regular follow up for Hem/Onc. While we are there they will be running a series of additional tests to determine whether or not Madison has any of the rare clotting disorders that they spoke to me about back in June. For those of you just joining us, these disorders are extremely rare and they are not fearful that she has them however in light of the blood clot that we know she has and her history Duke felt like that it would be wise for us to rule this out.

Since last update upon reviewing some of Madison’s medical records I determined that her current condition of four blocked veins and a blood clot were noted on CT scan back in 2004. Unfortunately, somehow everyone missed it. This information was a little disappointing to me. However, I’ve decided that I will choose my battles wisely and this isn’t one that I plan to pursue. Although because of this information I will be getting a complete copy of her records and will be reading every word of them. I wonder what else is in there that I don’t know anything about. It is my job to know, it is my job to be an advocate for Madison.

Madison has been swimming and enjoying her summer. She hopes to spend some time with her grandparents in the mid-west before school starts back. We are working out dates now.
Madison has missed riding lessons this summer and specifically has been missing her instructor Kat who went home to Tennessee for the summer. Kat will be returning soon and hopefully will be able to resume lessons with Madi.

Thank you for your continued concern and prayers for Madi. Please continue to lift her up.


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