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Madison Smith's Website - Viewing Journal - Friday, June 19, 2009 11:42 AM
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 - Friday, June 19, 2009 11:42 AM


Journal

June 19, 2009

No excuse for not updating lately, just like everyone else, life is busy! EOG’S are over, school is out, and the summer is already in full swing! Can I get a hooray????

Since last update, we’ve had some challenges but overall, Madi is doing pretty good. About a month ago, Madi started having some more lung issues. She has an odd, congested cough (like bronchitis) with no other symptoms. As a result, she has been requiring breathing treatments. She was given three new meds almost two weeks ago that have held everything together to the point that she hasn’t needed multiple treatments through out the night since last Friday. However, the cough and congestion seem to be the same. Weird???? She was seen by her lung doctor but he wasn't really sure if it was viral or what was going on.

She has spent the week at camp. This year she went to Victory Junction. This is a camp that is the mastermind of Kyle & Patty Petty that is specifically for children that have issues medically that would prevent them from going to a normal traditional camp. The camp is an amazing place where children enjoy bowling, swimming, horseback riding, challenge courses, crafts, movies and much, much, more. The camp is staffed with Dr’s and nurses so moms like me feel very comfortable. This week has been “Cancer Week”. The only children there either currently have cancer or have had the disease. Madi was very, very, excited about going. We were excited for her to be around other children that totally get where she’s been. There is such comfort to the human spirit knowing you’re not alone.

Because of her new need for breathing treatments, I wasn’t feeling real good about sending her. Even though I knew that they could handle it, I was feeling bad that someone would have to get up with her at 2am and do another treatment. You know, moms do it because we love our children but we still don’t enjoy it. I was just thinking a dis-interested 3rd party might find the chore a tad inconvenient!

We’ve spoke to the nurse once this week. Other than needing the breathing treatments, she had one migraine. Her normal migraine rescue medicine didn’t work, so they gave her a narcotic pain medicine that we use only after nothing else works. This left her a little fatigued but they were able to get the headache back to a manageable level. So overall, I would say that it was a great week! We will pick her up in a few minutes.

Madi has an appointment next Thursday with the chief pulmonologist (lung doc) at Johns Hopkins in Baltimore, MD. We consulted her earlier in the year and planned to take her this summer to see her. Apparently, this doctor has a very limited schedule this summer and next week was actually the only date this whole summer that they could see Madi.

The Sampson County Relay was two weeks ago and in spite of a little rain, I think it was a success…. Madi’s shirt that she designed really turned out beautifully. We were very happy with them! Also the fundraiser for the Leukemia & Lymphoma Society also ended about that time. I mentored Taylor Faircloth this year for her senior project on Leukemia. She ran as the honorary youth candidate for Woman of the Year through LLS as well. I am proud to say that her campaign raised almost nine thousand dollars! This was in a down economy and I think a remarkable total. I find it especially remarkable considering she’s only 17 years old! Needless, to say, Taylor also did a remarkable job on her project scoring 100% on each of the three area’s in which she was graded on. I would like to personally thank all of you that contributed to her campaign by donating money and auction items to The Leukemia & Lymphoma Society. LLS, Taylor, & myself all very much appreciate your support and we could not have done it without you!

We hope all of you will have an absolutely wonderful summer! Enjoy all the ones you love! We will update again sometime after Johns Hopkins.


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