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Madison Smith's Website - Viewing Journal - Saturday, October 18, 2008 4:38 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 - Saturday, October 18, 2008 4:38 AM


October 18, 2008

Journal 10:00a.m.

This morning upon getting up and going outside I realized that fall is really here! You can now look around and not only see it but with the recent weather change it now feels like fall. Where this year has gone is beyond me but it won’t be long now and it will be Christmas once again.

This year, it is my hope that we can reflect on the great things that God has provided for our family and be thankful for all of those things. So often we get so caught up in the gifting experience that we miss the fact that we don’t need a third of the things that we have nor do our friends and family that we gift. We further miss the meaning and significance of both Thanksgiving and Christmas. It is my hope that, that will be truly different in our home this year.

Things have been going okay around here. Madison has been on her new medicine for about a month now. We have had mixed results and are unsure if it’s made much of difference in her headaches. On one hand we haven’t had to pick her up from school since she’s been on it and that was not the case with the first medicine. On the other hand, she comes home from school (at regular time)several times a week with a pretty bad headache. Twice since being on this new medicine we’ve hung around the house on the weekend because her head was hurting so bad, she just couldn’t go. She had no energy.

On October 7, 2008 she went back to Duke for a couple of appointments. The first was to get the results of the cognitive testing that she had done. She has this done every year. Over all, her results were pretty good and better than we anticipated based off of 2007. As a result, we have made a few changes to how things are done at School for Madi based on Duke’s recommendations.

The second appointment was with the Peds Pulmonologist, we were actually supposed to see the PA. It was suggested that she be seen by Pulmonology by another specialist. At this appointment they put her in an air chamber type of contraption and then gave her a breathing test. Then they gave her a breathing treatment and administered the breathing test again. This is the normal way that they perform that test to see if there is any improvement in breathing functions after the breathing treatment. She also had an X-Ray of her chest. Madison’s X-Ray was perfect. When she did the breathing tests both times, when she would breathe as she was told to do an error message would pop up on the computer screen saying the levels were not in a normal range. Of course, the technician isn’t allowed to say anything.

After the tests they put us in a patient room where we waited, waited, and waited for the PA. The longer we waited the more I was concerned because we don’t usually wait a long time in a patient room and they knew we had another appointment that we were already an hour late for. I decided that if the PA (a female) actually came in that would mean that everything was fine and they were just running behind. But then, a few minutes later came a knock on the door and a gentleman introduced himself as the doctor. He said that they were sorry it took so long & that they were reviewing her results against her extensive history and that they were a little perplexed.

The long and the short of it is that her Pulmonology visit yielded them scheduling a Metabolic Exercise test for Madi. This is like a stress test that they do for heart patients but it measures many other things than just the heart unlike a stress test. The metabolic exercise test can determine how our why there are deficiencies in breathing. It specifically looks to see if there is a deficiency in the lungs or if it because of an issue with the heart. It can further measure the gases in her oxygen to see if there are other issues which are sometimes caused by the body just being de-conditioned. On October 29, 2008 she will have this test as well as an EKG, and an Echocardiogram. I don’t recall her having an EKG before but every ECHO she has ever had has been good. I understand that it could be up to a week before we have the answers of those three tests. Ideally it would be sooner but we’re not planning on it. We have postponed her follow up Neurology appointment until after we have the results of these tests as it was originally scheduled for the day before these tests, which seemed a little pointless.

We are not nervous. We are however trusting that whatever is supposed to be revealed, will be revealed. God is in control and has been in control this whole time and whatever it is, it is! We were evidently supposed to go to the pulmonologist for a reason and we will see where this takes us next.






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