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Madison Smith's Website - Viewing Journal - Thursday, December 11, 2008 4:24 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 - Thursday, December 11, 2008 4:24 PM


Journal

December 11, 2008 10:25pm

Madison’s chronic headaches for the first time this week have officially graduated into migraines….Since last update we’ve had a lot going on and Madison clearly hasn’t had a good week.

Madison came home early from school on Monday with a headache. She went to bed as soon as she got home and slept for 4 ½ hours. She woke up with the same headache and then went to bed with it that night. On Tuesday morning she woke up with it again, but it didn’t seem too bad so I sent her to school. By Tuesday afternoon she was in tears with head pain so once again we picked her up early from school. This time though it was different than any headache she’s ever had. She was screaming in pain, crying, throwing up, and her eyes were extremely sensitive to light.

We took her to the pediatrician between her, the neurologist, and hem/onc doc’s they felt she needed to be seen in ER. We spent Tuesday evening and night at the ER at Duke. They did blood work and a head CT. They felt that the head CT was necessary because of what had gone on combined with her history. Both the head CT and blood work were fine so they ruled it a migraine.

Madison was seen on Wednesday by Cardiology, Pulmonology and Neurology. The cardiology appointment went fine. He suggested that we think about closing the PFO (patent foramen ovale) Madi has. This is actually a small hole in her heart. Which sounds bad but it’s really not all that uncommon. More than 25% Americans actually have them too, they just don’t know it. Closing these has provided relief to some people with chronic headaches. They can’t be sure that it will work but the risk is somewhat low and he feels it might be worth a shot. We intend to keep that open as an option in the future but do not plan to act on that at this time.

Pulmonology called back from Duke and suggested that Madi repeat the Metabolic Exercise Stress Test. This was the test that she had done for which she had a decline in one of her airways that was considered “clinically significant”. Madi repeated the test. She barely got through it. The test was rendered a valid test. They apparently expected that her results would be the same or better than the first test. Unfortunately, Madi’s second test’s results were far worse than the first. What was a 16% drop in her midflow airway is now a 51% drop. All the other area’s that were okay in the first test were not even close to a normal range in the second test. We don’t know what any of this means right now and will actually be seeing the doctor on the 22nd to find out what he thinks regarding her results. When she repeated the second test she did it with the technician as well as the chief of the exercise lab. This time they did give her the hat and the mouth piece that measured the gases that she put off.The doctor was not there and we didn’t get to see him.

As far as Neurology goes Madison’s doctor is really great with Raleigh Neurology. He said that chronic headaches are like wild fires. Unless you put a wild fire out completely, it’s still smoldering and once a wind blows it lights the whole thing up in to a giant forest fire. He said that all the med’s we’ve tried for Madi’s headaches haven’t worked that much and so her headaches have never been completely gone and the migraine she experienced on Tuesday afternoon is as a result of her chronic headaches just building up and have now developed into migraines. He has increased her medicine and has given us a new medicine just for Migraines. We will try all of this and will go back to see him in 4 weeks. If this doesn’t work, he is talking about putting Madi in the hospital for five days. For which during that time she would get a regimen of drugs to make her headaches completely go away. They would also do a spinal tap and measure her opening pressures. We are not at the place yet that we would do that. There are more things we want to try first. I think her doctor just wanted to put it out there as a viable option if what we are doing now doesn’t work.

I kept Madi home from school today because we felt that she really needed to rest. She was really spent after her stint at Duke for a day and a half. Today she has had a good day. She rested a lot and has not had a headache at all today! Maybe the new meds are going to work! It is our plan for her to go to school on Friday.


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