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Madison Smith's Website - Viewing Journal - Thursday, May 1, 2008 8:11 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 - Thursday, May 1, 2008 8:11 AM







Madison Smith Madison Smith


May 1, 2008
We are still awaiting additional information. Hopefully, we will have it later today. Thank you for your concern and prayers. Madison has had good week so far. ~Allison~

Journal Update April 28, 2008
This is a follow up post to the posting from April 25, 2008. Please read that post to get the full picture of what is going on. We had somewhat of an eventful weekend! On Saturday, we ended back up at Duke with Madi for what appeared to be a reaction to the dye that was used to do the test on Friday. They flushed her system with fluids and gave her some meds and released us close to mid-night on Saturday night. Both Sunday and Monday have been good days for us

Today I heard from Madison’s Cardiologist Dr. John Rhodes. He has reached out to a surgeon at Duke, he has e-mailed peds Hem/Onc, and has also put a check out with CT records. We have not made any additional decisions on what the next steps will be or when we will move forward with additional testing. Dr. Rhodes will also be contacting a specialist from a Texas children’s hospital that has experience with this and get his opinion. He mentioned that he will likely want more pictures than what we took Friday to render his opinion. The reason CT records is being consulted is to find out whether or not they have CT records on Madi of her chest that actually show her veins. If so, this may eliminate some of the other more invasive approaches to seeing what they need to see and will further avoid additional radiation exposure not to mention sedation. I’m really hoping they will find what they need. Madison has had many, many, many CT scans of her chest.

Dr. Rhodes is a top Cardiologist in this country and is known well for his work. I feel very confident in his ability and further feel that he has Madi’s best interest in mind. He is taking a very thorough approach to this matter and although we don’t have answers yet, we will. Dr. Rhodes did give me confirmation today that he didn’t have any worries at all that what he was seeing had anything to do with a new malignancy. Madison’s leukemia is in remission, her bloodwork looks good. It is likely that the obstruction that she has, she has had for quite some time but we didn’t know.

Dr. Rhodes and I will talk again on Wednesday for sure. If anything changes before then, I will update.

We appreciate your concern for Madi and covet your prayers.

P.S. "When you change the way you look at things, what you look at changes" Although when learned of this on Friday it wasn't exactly something we wanted to hear, we needed to know what was going on inside her little body. I am thankful that it was revealed. I feel strong in my faith that we've come this far and that we will make it through another hurdle. No one ever promised us that this life would be easy and if it was, what would we have to look forward to?

Update on Madison April 25, 2008 1:30

Please keep Madi in your prayers. This morning she had a procedure at Duke Hospital to determine if any of her veins were obstructed,kinked, or completely blocked. They suspected that it was a remote possibility and that was what was causing her chronic headaches. Unfortunately, today they determined that she has an A-typical blockage in her left innominate vein. What they found was far more extensive than what they had anticipated and because it is so rare, much thought, discussions with other physicians, and more information is needed before they can determine what to do next. They are unsure of the length of the obstruction and where exactly it starts and need an operating room and complete sedation to figure it out. We've chosen not to do anymore today because they don't know right now what they would do with what they find and they don't want her to be sedated for hours on end at this point because of the allergies Madi has with sedation.

Although they are not sure, they believe that what they are seeing could have possibly been caused by the mass that Madi had in her chest in 2003. Madi's body has to a degree re-adjusted for this problem and has circumnavigated the blood flow to get the blood to where it needs to go in spite of the obstruction.

We will know more on Monday on what the next steps will be. Please pray

Allison

Dear family and close friends,

I am writing because I need your help and I think family and friends are a great place to start. I have been named Girl of the Year by the Leukemia Lymphoma Society! I’m not sure exactly how I got picked for this but mom & dad say it’s because I was so brave when I fought this yucky disease.

Mom is running for Woman of the Year in my honor to raise money for the Leukemia Lymphoma society during an eight week program that runs until June 2, 2008. The money raised goes to support the society in finding ways to make people better when they get this disease and to help families of people that have the disease.

Please help me and my mom make a difference. My mom says that God’s grace, and research done by Leukemia Lymphoma society is why my doctors at Duke knew how to make me better. We’re happy about that!

If you would like to help, your contributions are completely tax deductible. You can donate with your credit card by visiting The Leukemia Lymphoma Society website at www.lls.org/ncemwoy, or return a check made payable to The Leukemia Lymphoma Society and mail to the address listed below before June 2, 2008. In doing so, you are helping the society in hopes they will one day find a cure for this disease. You can give in memory of a loved one that had the disease, in honor of someone important to you that is fighting the disease, or just because you are healthy and are thankful for that. Thank you for thinking about it because we really need your help and every dollar counts whether big or small!

Madison Smith

Checks can be mailed to:

Allison Smith for Woman of the Year
The Leukemia & Lymphoma Society
401 Harrison Oaks Blvd., Ste. 200
Cary, NC 27513

Your help with this is a greatly appreciated! We are in need of ten items of value or something that may be hard to get. These items will be used to auction off at the final event on June 2nd. If you can provide one of these or know someone who would be able to donate something like this please contact me. Some examples would be autographed game balls, weekend getaways to the beach or the mountains, sports game tickets, concert tickets, rounds of golf at a nice green, Spa packages from Spa’s in the greater Raleigh area, a beautiful hand-made quilt, a gas grill. These are just suggestions, any and all items will be greatly appreciated! Your generosity is amazing!

To learn more about the whole campaign or make a donation go to: www.lls.org/ncemwoy

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