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Madison Smith's Website - Viewing Journal - Sunday, February 5, 2006 7:17 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 - Sunday, February 5, 2006 7:17 PM


Since last update a lot has changed at the Smith house. Madison is doing beautifully! She was seen at Duke on January 31st for her regularly scheduled check up. They did blood work and she received her IV-IG. The visit took the better part of the day. Madi seemed to have some sort of reaction to the pre-meds they gave her so she wouldn't have a reaction to the IV-IG like she has in the past. She got a pretty severe headache that came on as soon as they pushed the meds. They ended up watching her for an hour and then they started the infusion. Everything ended up working out fine!

Around January 7th Howard and I took temporary custody, indefinitely of two little girls. (Sisters) Their names are Sarah age 5 and Amanda age 8. We knew about them through our church and Madison is in the same class at school with Sarah. Their mother was being evicted from their home near us and the state was getting ready to come in and take them away again. Howard and I had been grieved for this family for a long time. The woman has seven children three of which are grown. Anyway….to make a long story short we offered to care for her children indefinitely, until she can get suitable living arrangements made that are free from infestations and approved by social services. This enabled the children to stay in the same school and the same church and afforded the opportunity for at least two of them to stay together during what must be a difficult time for them.

Another family in the church took the other two children that are ages one and three. We really don't know what God's plan is for their mother or these children but we intend to provide a loving safe environment for them for however long it takes. We don't know if it will be a season or a lifetime but I know that their mother truly loves them and is trying to pull everything back together to get them back. Please pray for Carol, we do every single day.

So all of this took place on a Saturday. The following Monday I wasn't feeling very good. I came home from work to rest. Those that know us personally know that it is extremely out of character for me to do that. I went to the doctor and she suggested admitting me to the hospital to perform some tests. She sighted that it would be quicker to get them done this way. Well, I wasn't sold on her little idea and agreed to the tests but not being admitted. My symptoms were high fever, slight pain in my side and a debilitating headache.

The test I had done on Monday didn't really reveal anything so I was going to come back in the next day for a CT scan. I suffered miserably through the night and totally should have been admitted. Tuesday morning and afternoon the Doctor was still trying to admit and I kept refusing. Around four that afternoon she discovered that I had a severe kidney infection that was in the beginning stages of abscessing. Okay, I have a high tolerance for pain but really this was mind blowing that I could have an infection that was that bad and never notice any real symptoms. Needless to say I finally surrendered and let her admit me to the hospital Tuesday night for which I stayed in until Friday. Not exactly convenient for our newly expanded family! Anyway I feel much better now and will be going back for follow up next week. They had me on high powered antibiotics for three weeks.

Nothing like dad having to get four girls ready in the morning! You know, girls have hair issues! Howard did awesome and by the end of the week we were referring to him as the “leader of the flock”! Not only were the kids to school on time each day but he exceeded expectations when he got them all ready for church on Wednesday night and loaded them took them to church then up to see me in the hospital. Let's just say that Howard is the bomb!

We have had some adjusting issues at the house. Maiya has thoroughly enjoyed the expansion and is adjusting well. Madison on the other hand has been a little hard to deal with lately. We are working very hard on this and this past week has seemed to be the best one yet. As for Sarah and Amanda they are very sweet, smart little girls that honestly have been a joy to have around. They have come in an adjusted like they have always been here!

Amanda's birthday was on January 26th so we celebrated that. We have Maiya's birthday on February 15th and Sarah's birthday on March 23rd. It feels like party central.

We are busy with routine doctor appointments for Amanda and Sarah that have been a long time coming. The girls apparently have some dental issues and hearing issues that were revealed at our pediatrician's office last week. Hopefully we will be able to get those worked out prior to them returning home.

Well I guess that is enough drama for our update! Please, please keep our family in your prayers. Please keep Madi on your pray list. Although she has finished her chemo and is doing great, she is not considered cured until she remains off treatment with no re-occurrence for five years. Our five years started in January 2006. Thank you for your continued support.


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