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Madison Smith's Website - Viewing Journal - Saturday, November 18, 2006 7:29 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 - Saturday, November 18, 2006 7:29 PM


Journal

November 18, 2006

Wow what a week we’ve had! We are presently on our way back from Walt Disney World in Orlando, Florida. We have some friends from the Dunn area that also went. Their daughter Sophie has seven more months of Chemotherapy for leukemia. Make a Wish of North Carolina sent them on her wish. Sophie is responding wonderfully to treatment. We went to Sea World, Universal and Magic Kingdom. Each day we met them at the parks and spent the day together. We enjoyed our time together!

Since last update, we got Madison’s results back from her MRI of her spine. They were negative. The orthopedic at Duke isn’t sure why Madison’s spine is curved the way it is at the top. Madison will continue with the strengthening exercises that she has learned from physical therapy. Duke wants to monitor her for six more months before they put her in brace. They are hoping that the situation will correct itself in the next six months. Their thinking is that her conditions will improve the longer that she has been off treatment. A chiropractor adamantly said that she has scoliosis after looking at her scans. He felt he could help her by regular visits for manipulation. The orthopedic doctor at Duke doesn’t feel it is scoliosis and is against the chiropractors suggestions. We are trying to decide whether we will take her for a second opinion at a second orthopedic doctor away from Duke. We have decided that she will not go to the chiropractor until we are clear about what’s going on.

On November 10, 2006 before our trip to Florida we had to lay our beloved dog Skrappie down. She was a boxer that we have had for eleven years. I got her when she was 5 weeks old. Boxers usually only live to be about nine. We aren’t really sure exactly what happened to her probably either a stroke or cancer. Boxers are bad for getting cancerous tumors. As old as she was it seemed pointless to check. Our other boxer Butch was hit by a car this afternoon and seems to have a broken leg. We’ve never had too many dog dramas but seem to be having a lot of them lately! Skrappie was a great dog and will be missed!

Well Madison’s next monthly visit to Duke will mark her one-year anniversary of being off treatment! Starting in January she will only have to go to Duke for check ups every two months. We are happy to be where we are but I have to admit it’s pretty scary. I like to think that we both have a lot of faith but I’d be lying if I said that we didn’t have fears of this awful disease coming back. Unfortunately, hitting the one-year mark off treatment doesn’t particularly ease my fears. I think a big part of the problem is that we know how quick it happened when she was diagnosed.

This Thanksgiving, we have so much to be thankful for. Madison is doing great medically, emotionally, and educationally. Matthew, Cody, and Maiya are all healthy and doing wonderful. Our parents are all living and healthy. So often while living the busy lives that we do, we forget to be thankful for the things in our lives that to us are a “given”. How easy it is to forget that those things, people, life, and good health are not a “given” but a gift from a God. This holiday season that is upon us I plan to reflect on those vary things. The best Christmas our family has ever had was the year Madi got sick. We didn’t go out and buy a bunch of gifts, we were just thankful to have each other. It was truly amazing how wonderful simple could be!

I found the below poem on another child’s website that is battling cancer the author is unknown. I thought it was great!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
FOR TODAY--------(AUTHOR UNKNOWN)

To My Child...
Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.
Just for this morning, I will let you wake up softly, all rumpled in your sheets and I will hold you until you are ready for the day.
Just for this morning, I will let you choose what you want to wear and smile at how perfect it is. Just for this morning, I am going to step over the laundry and pick you up and take you to the park and play. Just for this morning, I will leave the dishes in the sink and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off and sit with you in the back yard and blow bubbles.
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the Ice-cream Truck, and I will buy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.
Just for this afternoon, I will take you to McDonald's and buy us both a Happy Meal so you can have both toys.

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
Just for this evening, I will snuggle besides you for hours, and miss my favorite T.V. show.
Just for this evening, when I run my fingers through your hair as you pray. I will simply be grateful that God has given me the greatest gift ever given. I will think about mothers who are searching for their missing children, the mothers who are visiting their children's graves instead of their bedrooms and mothers who are in the hospital rooms watching their children suffer senselessly, and scream inside that they can't handle it anymore, and when I kiss you goodnight, I will hold you a little tighter, a little longer. It is then I will thank God for you and ask him for nothing,

EXCEPT ONE MORE DAY!!



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