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Madison Smith's Website - Viewing Journal - Wednesday, December 24, 2008 11:27 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 - Wednesday, December 24, 2008 11:27 AM


Journal

December 24, 2008 5:00pm

Merry Christmas to all of our family & friends! May 2009 bring all of you good health, good fortune, & happiness! Thank you to all of you that sent awesome Christmas cards. We just love the picture cards! Just so you know, if you sent us one, it is hanging from ribbon in my kitchen for all our visitors to see!

Since last update on December 11, 2008 Madi’s headaches have stayed manageable without any new trips to the ER. She had to come home from school two days at the beginning of last week but the latter part of the week was much better. The migraine medicine seems to provide some relief on the “bad days” but she can only take that medicine three days a week.

We went back to Pulmonology on the 22nd for which once again her results from the 2nd exercise test had not been read. Not sure why because the test was two weeks earlier. The long and the short of it is that they are now recommending that Madi have a sleep study done. The Dr. was able to look at the raw data and suggested that Madison has exercised induced asthma and that she could be “de-conditioned”. We will be contacting Duke on Monday to get an appointment for the sleep study. That Dr. also wants to see her back in 4-6 weeks.

We went back to Neurology on the 23rd. We will continue on the increased dosage of her regular headache preventative medicine and will go back on January 8th. He suggested that we add B2 and Magnesium supplements to her diet. One is supposed to help with chronic pain and the other for energy. He is still keeping the option open to put her in patient for 3 to 5 days to perform a protocol called DHE 45. We are not sure that we want to do this; we need to read a lot more before we consider it.

We have an appointment Monday morning as a consult only with a Chiropractor. They have been successful in giving people relief from headaches from both a manipulation stand point as well as acupuncture through electrodes. We will go over her extensive history and get his thoughts on possible solutions with little to no risk. We are pretty sure that manipulation will not be the route for her because of the blocked veins that she has in the area that would need to be manipulated. We aren‘t sure where this will take us but feel at this point it doesn’t hurt to try. All the reasonable solutions we have tried have been unsuccessful.

It has also been suggested that we completely stop whatever she eats the most of. For Madi that would be dairy products. Specifically, she drinks a lot of milk and eats a lot of cheese. Both of these items are considered products that have been known to induce migraines. I personally think it’s a stretch but once again, it’s worth a shot. We intend to try this for one month. One month is apparently the time frame to see if anything is working in the way of medicine or changing a diet. I actually hate it for Madi because she truly loves dairy and this will be a long month for her.

Madi and Maiya are eagerly awaiting a visit from Santa. Maiya says it’s been taking way too long to get here! We usually go out of town for the holidays but this year we decided to stay in NC. We will be spending our days with friends and family. We are also looking forward to a visit from Grandma Carol and Grandpa Gary from Illinois. They will be coming in a few days, weather permitting on their end. Looks like it’s going to be in the 70’s here. Crazy weather!

Thank you again for your continued support and prayers. One day, we hope soon, these headaches will be a thing of the past!


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