Tim Davis
Donation protected
Tim Davis Fundraiser for Medical Expenses & Desmoid Tumor Research.
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Caring Bridge: https://www.caringbridge.org/visit/timdavis2
Tim is a no-nonsense guy who really dislikes being in the limelight. He recognizes there are a lot of people who love him, are praying for him, thinking of him, and hoping for him that need occasional updates as to where he is in his journey. He has given me permission to do so on his behalf.
The best way to start is always at the beginning:
Tim was diagnosed with Intestinal Polyps/FAP & Gardner’s Syndrome in junior high. This is a genetic disease which he shares with his deceased father. Tim's situation is unique though; in addition to the polyps he suffers from Desmoid Tumors (for more information visit http://dtrf.org (http://dtrf.org/)) which are very difficult to treat. These diseases are incurable; though treatable and manageable. Tim has been undergoing treatment for both for a very long time. Since the Desmoid Tumors that Tim has reside in his abdominal wall they affect a great number of his major organs. The traditional treatment is chemotherapy and Tim has undergone many different chemotherapy cycles which usually shrinks the tumors temporarily or stabilizes the tumor
In February 2016, Tim started a trial through the National Institutes of Health at Barnes Jewish Hospital/Siteman Cancer Center in St. Louis using a drug called Sorafenib/Nexavar. Initially, there was shrinkage of the tumors, however a tiny hole in his intestinal wall was exposed called a fistula. Tim was hospitalized in St. Louis for a week. The timing couldn’t be worse because Tim and Kristin had just moved to Kansas City. Due to the hole in his intestinal wall, Tim was not able to absorb enough nutrients through normal eating and in June of 2016 he was placed on TPN (Total Parenteral Nutrition). He now receives all of his nutrients from a two liter bag of fluid that is administered over a 12 hour cycle into a specially placed IV line called a PICC line (double lumen). It is not ideal and has created a challenging quality of life but there were little alternatives as Tim could not eat or digest food anymore.
Tim and Kristin are taking his treatment to its next stage; small bowel transplant. Because of the fistulas, there is no way to surgically repair Tim's intestines. Instead, he needs a new set of organs. In theory, these organs will be polyp & disease free and therefore a huge source for the Desmoid Tumors will be eliminated. Furthermore, the current tumors will be removed which will solve many other issues.
There are many unanswered questions, many steps on Tim's path to healing, and many places where something can go wrong. Tim is being cared for by the best and the brightest in the nation who wants nothing more than to significantly improve his quality of life- Cleveland Clinic. Currently, the hardest part of the entire plan is the fact that Tim and Kristin must move to Cleveland, OH for at least the next year, if not longer depending on how long the transplant process takes. This will be a difficult and an expensive move on top of a difficult and expensive surgery and recovery. These two people are so special to each of us; it is our job to do all we can to lift them up and support them… Through prayer, love, and financial assistance (if possible). Please consider donating to help offset the cost of their move and Tim's care as well as keep him, Kristin, and their families in your mind. You will find a link to a Go-Fund-Me page at the end of this entry.
As you can imagine, this is a very overwhelming time for both of them. Please do all you can to respect their privacy and time together. If you have questions regarding Tim's plan of care or donating please send a message through this Caring Bridge page or leave a message on the message board. Please try to avoid contacting Tim, Kristin, or their family directly. It is very difficult for everyone to repeat the same story. We will do our best to send updates as we have them. Thank you!
------------------------------------------------
Caring Bridge: https://www.caringbridge.org/visit/timdavis2
Tim is a no-nonsense guy who really dislikes being in the limelight. He recognizes there are a lot of people who love him, are praying for him, thinking of him, and hoping for him that need occasional updates as to where he is in his journey. He has given me permission to do so on his behalf.
The best way to start is always at the beginning:
Tim was diagnosed with Intestinal Polyps/FAP & Gardner’s Syndrome in junior high. This is a genetic disease which he shares with his deceased father. Tim's situation is unique though; in addition to the polyps he suffers from Desmoid Tumors (for more information visit http://dtrf.org (http://dtrf.org/)) which are very difficult to treat. These diseases are incurable; though treatable and manageable. Tim has been undergoing treatment for both for a very long time. Since the Desmoid Tumors that Tim has reside in his abdominal wall they affect a great number of his major organs. The traditional treatment is chemotherapy and Tim has undergone many different chemotherapy cycles which usually shrinks the tumors temporarily or stabilizes the tumor
In February 2016, Tim started a trial through the National Institutes of Health at Barnes Jewish Hospital/Siteman Cancer Center in St. Louis using a drug called Sorafenib/Nexavar. Initially, there was shrinkage of the tumors, however a tiny hole in his intestinal wall was exposed called a fistula. Tim was hospitalized in St. Louis for a week. The timing couldn’t be worse because Tim and Kristin had just moved to Kansas City. Due to the hole in his intestinal wall, Tim was not able to absorb enough nutrients through normal eating and in June of 2016 he was placed on TPN (Total Parenteral Nutrition). He now receives all of his nutrients from a two liter bag of fluid that is administered over a 12 hour cycle into a specially placed IV line called a PICC line (double lumen). It is not ideal and has created a challenging quality of life but there were little alternatives as Tim could not eat or digest food anymore.
Tim and Kristin are taking his treatment to its next stage; small bowel transplant. Because of the fistulas, there is no way to surgically repair Tim's intestines. Instead, he needs a new set of organs. In theory, these organs will be polyp & disease free and therefore a huge source for the Desmoid Tumors will be eliminated. Furthermore, the current tumors will be removed which will solve many other issues.
There are many unanswered questions, many steps on Tim's path to healing, and many places where something can go wrong. Tim is being cared for by the best and the brightest in the nation who wants nothing more than to significantly improve his quality of life- Cleveland Clinic. Currently, the hardest part of the entire plan is the fact that Tim and Kristin must move to Cleveland, OH for at least the next year, if not longer depending on how long the transplant process takes. This will be a difficult and an expensive move on top of a difficult and expensive surgery and recovery. These two people are so special to each of us; it is our job to do all we can to lift them up and support them… Through prayer, love, and financial assistance (if possible). Please consider donating to help offset the cost of their move and Tim's care as well as keep him, Kristin, and their families in your mind. You will find a link to a Go-Fund-Me page at the end of this entry.
As you can imagine, this is a very overwhelming time for both of them. Please do all you can to respect their privacy and time together. If you have questions regarding Tim's plan of care or donating please send a message through this Caring Bridge page or leave a message on the message board. Please try to avoid contacting Tim, Kristin, or their family directly. It is very difficult for everyone to repeat the same story. We will do our best to send updates as we have them. Thank you!
Organizer
Kristin Mena Davis
Organizer
Cleveland, OH
