Home Sign Our Guestbook View Madison's Pictures View Madison's Journal Archives Contact Us
Madison Smith's Website - Viewing Journal - Tuesday, March 31, 2009 6:14 PM
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 - Tuesday, March 31, 2009 6:14 PM


Journal

April 1, 2009 12:10 am

It seems so wonderful to have nothing negative to report about Madi! In fact, as I write this I’m just trying to put into words what my heart feels. I once heard that the words that we speak are often an overflow of our heart. I guess that will prove to be true if you read this and are able to envision my happy face through my words. Madison has truly been doing great! For the exception of previously scheduled doctors appointments Madi hasn’t missed any school in over a month and has been virtually headache free. This is sooooo HUGE for us!

Last week we spent all night Thursday and all day Friday at UNC Chapel Hill to have Madi’s sleep study and MSLT study repeated. The first one was completed at Duke for which the results were abnormal. In short, the second study really went well, the results are in and are well within the normal limits that would be expected for a child Madi’s age! The first study showed mixed apnea’s as well as, too much end tidal Co2. Elevated Co2 can most definitely cause headaches.

Madison was hospitalized for five days in February for Migraines. While in-patient she received a special combo of drugs to give her some relief. When they released her, they prescribed a new med that we weren’t really excited about her taking but had really hit rock bottom and had already exhausted several other drug choices that just didn’t work. At this point, we believe that this drug that is commonly used for epilepsy and is also a carbonic adhydrase is the reason that her head isn’t hurting and also the reason that her Co2 levels are now normal.

Today, we went to Duke for our regularly scheduled appointments with her cancer and pulmonary doctors. Madi’s blood-work was perfect and breathing tests results remained unchanged (not normal but at least the same as the last several times). I also requested a special test be done that was suggested to me by Johns Hopkins. This particular test was also normal and confirmed that an inhaled steroid would be of no value to Madi. This was the drug that was prescribed that I felt strongly against. Her pulmnologist agreed today that she doesn’t need to take it! Can you see my happy face?

We don’t have to go back to the cancer doctors for six months and as long as there are no new lung issues that arise, we don’t have to go back to Pulmonology for four months. This too is very HUGE for us! Today, I must say was probably one of the best days that we’ve had at Duke in the last 2 years. It feels really good, to be good!

After our appointments today we went visiting to two different in patient people that are suffering from Leukemia. One was a thirteen year old boy of whom we had never met until today. He was by himself, and had mouth sores from his chemo treatments that were so bad that he couldn’t speak or move his lips. He was so happy to see us and communicated with us by writing on his dry erase board. I was so humbled by this encounter. At the end of our visit, he wrote “Thank you so much for coming to see me today.” I just wanted to cry. It always amazes me how one small voice can teach the world a song. It’s especially amazing when that voice can’t be heard audibly but can be read through a dry erase board and body language. Please pray for our new friend Shack.

Please also lift up Sandi McNeill. She is an active member our community that was recently diagnosed with Adult Onset Leukemia. She’s been in-patient at Duke for the last 20 days and has at least 8-10 more days to go. The chemo that they are giving her is really knocking her down. Today was not a good day for her but she was still her sweet wonderful self, full of hope & faith and just looking up! Sandi is no doubt and inspiration to everyone she meets!

Thanks for praying us through all the hard days! Today, we are celebrating a win! We'll update again soon.


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