Home Sign Our Guestbook View Madison's Pictures View Madison's Journal Archives Contact Us
Madison Smith's Website - Viewing Journal - Tuesday, October 27, 2009 3:24 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 - Tuesday, October 27, 2009 3:24 AM


Journal

October 27, 2009

Madi has had a great start to the school year. Home school is going great! She loves it, we love it, should have done it four years ago…. We started her in a weekly art class in our local community. Through this, we have found one of her unique gifts. She absolutely loves this class. We joined the Sampson County Arts Council and I entered one of her pieces into an art contest. Her piece, won first place in the county for the 4th grade! We were all very excited about that.

Many people believe that home school takes away from socialization that is vital to all people. Through our experience, we have found that it isn’t an issue at all. Madi has had friends over on the weekends, gone to her friend’s houses, birthday parties, and church functions. Though her school changed, her friends haven’t and neither has her social calendar. We’ve always been parents that feel, “less is more.” What I mean is, that we don’t want our kids to have practice or some commitment we’ve “signed up for” every night of the week. That life is too much for us and we don’t enjoy it.

Madi went back to Duke on October 22, 2009 for a myriad of appointments. Overall, she had a really good day and pretty good reports. The Oncology appointment went well. Her blood work looked great and we don’t have to go back to them for six months. January will mark four years that she has been off treatment. This means that we only have one more year until we hit the five year mark for which she will be considered “cured” from Leukemia as opposed to “in remission”.

On the 22nd, she was also seen by an Orthopedic. She is seen by them yearly for scoliosis. She hasn’t been diagnosed with this but has been being monitored because each year for the last three her curve in her spine has been moving towards the scoliosis direction. Each year it has got just a little bit worse. However, this time, it had improved!!! That was really nice to hear.

Her other appointment was with the pulmonologist. They did the same lung function tests as they do every time we go. Her lung functions had declined again. Some of the numbers had declined rather significantly. I guess we should expect this with Obstructive Lung Disease. For right now though, she is asymptomatic. We are going to keep her on the same medicine that she is on right now and her Dr. will be monitoring her very closely. If she gets sick this winter, we may have to do some additional things to help her breathe better. We’ll just cross that bridge when we get to it.

We’ve been on our long awaited vacation to Disney. We haven’t been to Disney in three years. This trip we’ve determined that we haven’t left anything at Disney and probably won’t be back for quite sometime. Madi’s energy level has been quite low. Because she’s too big for a stroller, and too big for us to carry, we actually rented a wheelchair each day for her. I thought she might be too proud to sit in it but she hasn’t felt too perky and has sat in it, all day every day at the parks. Madi hasn’t really been able to pin point what feels bad, she’s just really droopy.

Madi’s Grandpa Gary had an accident about a week ago and has hurt his arm really bad. He has been in the hospital and has had a couple of surgeries and has been in a lot of pain. Although he’s home now, his recovery will likely be pretty slow. Please keep him and Grandma Carol in your prayers. Grandpa has never been hurt, never been in the hospital, and all of this hasn’t been too nice!

Thanks for checking on us and keeping all of us in your prayers!


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