Home Sign Our Guestbook View Madison's Pictures View Madison's Journal Archives Contact Us
Madison Smith's Website - Viewing Journal - Monday, January 5, 2009 5:08 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 - Monday, January 5, 2009 5:08 PM


Journal

January 5, 2008 11:00pm

I have a few quick things to add since last update. We heard back from the Dr. at UNC that wrote the article regarding Pulmonary Fibrosis that I mentioned below. He felt that based on Madi’s history that this is something that is certainly possible and recommended further evaluation. He offered to make a referral to someone at UNC but actually only see’s patients that are in-patient at this time. Thankfully, we aren’t in-patient!

I sent an e-mail with the studies I found to Madi’s pulmonary Dr. at Duke. They called back today after reviewing them and have scheduled her to have a special type of chest CT on Thursday January the 8th and will be going over those results with us on Friday the 9th. They have also made arrangements to have her test results from December 10th read prior to our appointment. Wooo whooo! We have the raw data and know that it wasn’t good but don’t have the written report. We will re-evaluate after these appointments whether or not we feel it is necessary to go back to UNC. I don’t know where this is going to take us but I have to say that I feel pleased because I feel like we are getting closer. Madi’s test on Thurs will not hurt. She is very comfortable going in the tube and will not have to be sedated for this.

Please pray that the doctors will get some answers to some of their questions and will be able to provide some accurate answers to us.

Journal

January 3, 2009 10:00pm

Happy New Year! We hope all of you had a wonderful holiday season full of all the people you love. We had a great break from school and the normal routine. Madi got to enjoy a visit from her grandparents and spent as much time as possible with her friend Hannah over the break. She absolutely loves Hannah and her whole family!

Since last update things have been up and down for Madi but she has had three really good days in a row. We are hoping that will be our new trend since school will be starting back on Monday the 5th. During the break Madi picked up some kind of bug (cold like symptoms) but has finished her antibiotic already and seems to be getting better for the exception of a remaining cough.

In our last update I mentioned that we had an appointment with a Chiropractor regarding Madi’s headaches. We postponed that appointment until further notice. At this point further notice means after we get some finality with Pulmonology and Neurology.

We tried the whole eliminating dairy products from her diet but that seemed to make absolutely no difference and I decided to abort that whole plan. Madi was quite pleased with that decision.

Honestly both of these things were cancelled because of some reading I’ve done over the break. Because I feel strongly that Madison’s pulmonary tests that she failed have meaning I’ve read every night determined to find answers for her.

Last week I found numerous articles surrounding pediatric cancer survivors and pulmonary complications. Study after study has been done that indicates that cancer survivors have a 30% more likelihood of having a condition called “Pulmonary Fibrosis”. Pulmonary Fibrosis is essentially scaring of the lungs. As a result it can cause a decrease in air flow volume, which decreases the amount of oxygen a person gets (which could cause headache) and actually causes fatigue, shortness of breath with exercise and periodic pain in chest with exercise. All of these symptoms are symptoms that Madison has in addition to a failed Pulmonary Function Test. Apparently this is a well known late effect of Chemotherapy, although I didn’t know about it.

Cancer survivors are at a greater risk for this condition because of chemotherapy. There are essentially 12 chemo drugs that are given to patients that are considered high risk; these drugs actually pose a greater risk for developing Pulmonary Fibrosis. Chest radiation, mediastinal masses, and previous lung trauma are all additional factors that make a person a greater risk for this condition. Having said that, Madison had a mediastinal mass which caused her lungs to collapse, she was treated with 8 of the 12 high risk drugs and had chest radiation which her lungs were obviously exposed to. We believe we are finally on to something. We believe to the point that we’ve e-mailed one of the doctors at UNC that was one of six authors of one of the studies asking for some guidance on what our next steps should be. That article specifically said that many times these kids go un-diagnosed because it is unfortunately a diagnosis that is usually missed. We ask him to suggest a specialist he thought we should see that has experience with this. We have not heard back from him yet. We have also emailed Madi’s pulmonary doctor with attachments of these studies. He was on vacation all last week and we plan to hear from him by early next week.

Madison is scheduled to have a sleep study done at Duke on Saturday the 10th. We’ve been told that those results will not be in until the end of January. Seems like hurry up and wait is the story of our life! Right now her next pulmonary appointment is scheduled for the 27th (I think) for which they are supposed to go over the sleep study results. Hopefully that won’t be like the results they were supposed to go over with me last week that hadn’t even been read! Did I mention how frustrating that was! I can promise that it doesn’t make a person feel all that confident in the Dr. they are seeing.

Anyway….we’ll keep you posted when we know more. Please continue to keep Madi in your prayers.


Thank you for taking the time to check our site, please sign our guestbook.