 Update - Sunday, June 15, 2008 5:29 PM
Journal June 15, 2008
For those of you just joining us, on April 25, 2008 Madison was found to have Venous Thrombosis or in simple terms, an obstruction in three of her veins that are responsible for carrying her blood back to her heart. They were able to determine that the left innominate vein, the subclavian vein, and the left internal jugular veins are 100% occluded. Madison’s body has formed veins that are called Venous Collaterals; they are very tiny and are many in number. These veins are the only reason why her blood has been able to get back to her heart. On June 5, 2008 intervention in the Cardiac Cath lab was attempted and Duke Hospital. They were trying to recanalize the veins in an effort to be able to perform angioplasty and put stents in. This procedure in the Cath Lab wasn’t possible. While they were in there they uncovered a blood clot in the left internal jugular vein and they also found a 4th vein in her upper right thigh completely occluded. Duke says that they aren’t concerned with the blood clot because it is completely formed and they have no fear of it becoming dislodged or falling apart. At this point, there isn’t really anything we can do. Apparently, this condition is believed to be rare and there isn’t a lot information on what to expect with it in the future. I have been reading and reading in an effort to find answers to my many questions.
Well last week every night I continued to pour through findings on the internet regarding Madison’s condition. I found something that is very encouraging to me! Specifically, I came across a study done in Italy by researchers at Catholic University. The international study was done in 2006 and monitored 1752 children with Acute Lymphoblastic Leukemia; it tracked the incidence of thrombosis in those children. 5.2% of all those children suffer or have suffered from thrombosis (obstructed/occluded veins). I am encouraged because I now know that we are not alone! I have sent an e-mail to Italy and hope to hear back from them. It was stated to us by more than one facility that they were not aware of any cases like Madi out there. “There’s really nothing to compare this to”
On Thursday, this week I will be meeting with a member of the Hem/Onc team at Duke to discuss all of the findings from the Cath Lab and get some clarity on everything from their view point. I was a little disappointed to know that the computers between the Cath lab and the Hem/Onc area don’t seem to share information. I mean that the Hem/Onc division had no idea what happened in the Cath lab on the 5th until I called them. Seeing how her condition was likely spawned from her cancer, it seems like everyone should be on the same page. What has been uncovered by the Cath Lab will likely largely alter things that the Hem/onc team would be able to do if relapse ever occurs. Madison is in remission from her Leukemia but we still have two and half more years to go before she is labeled “cured”. I think that discussing this now will give both them and us an eyes wide open view on what to expect. This is important to me. I am hopeful that they will also be able to point me to a resource to better understand what all these occlusions mean for Madi. Please pray through this with us.
Since last update on June 9, 2008 things have been going pretty well. Madi had a good week this week! For the exception of today and Thursday she really seemed to feel good (not just okay) but good. Madi and Maiya had the opportunity to participate in two different bible schools last week. One at Lee’s Chapel and the other at Stoney Run. The girls had a great time and thoroughly enjoyed being around their friends from those churches. Thank you for making my girls feel so loved and welcome!
News from the 2008 Man & Woman of the Year Campaign
I have a special & important message to get out in reference to the 2008 Man & Woman of the Year Campaign! With all of your help, The Leukemia & Lymphoma Society reached their goal of raising the millionth dollar since the campaign’s inception. Special congratulations go out to Dr. Mark Yoffee and Robin Smith for winning the official title for 2008. It was my honor to be one of twelve candidates that had a hand in raising more than $329,000 in only eight weeks for The Leukemia & Lymphoma Society! Thank you to all of you for giving to this awesome cause!
A special thank you goes out to Plainview Elementary School, Bethesda Friends Meeting, & Foresters for organizing events/campaigns that generated just about half of the total money my campaign raised, which at last count was $21,400! I also need to thank all of the businesses that graciously donated auction items for the final auction. Those auction items generated an additional $2400.00 for The Society that would not have been possible without you. Specifically, Arts of Love,The Beaufort House Bed & Breakfast, The Blue Water Spa,Beasley Contracting,The Carolina Hurricane’s, Duke & Coach K, Prismaflex , Just Claying Around, and Skin Sense A Day Spa. Thank you to the Dunn Daily Record, The Smithfield Herald and Sampson Independent for running front page articles. Thank you to NBC 17 and Kim Genardo for being such an awesome host to Mrs. Shannon Best and Mrs. Allison Godwin’s classes from Plainview Elementary! Thank you to the students in those classes, you really earned that trip! I hope it was fun! You guys have now had your 30 seconds of fame with your Wake Up call that aired on Friday! We would like to thank both of our employers NC Farm Bureau and Thompson Financial Group for all of their support for both this campaign and for Madi and her plight in general!
~Allison~
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