Madison’s Story

Site created on December 15, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Katie mcKay

Good morning, we have had a full Sept. Great weekend up north, my sister Sara was able to join us too. We are heading out to Colorado for much needed reunion with Cass Adrian and Isabelle. Madison’s liver and kidneys remain stable. Continuing with medical management. No paracentesis since May and even tolerated being off her diuretics for 3 days for testing. She had an endoscopy showing stable varices. 👏She has under gone more in depth testing for her arterialized venous developmental malformation. After much discussion with multiple teams and reaching out to experts internationally the conclusion was made the risk of treating is higher than the risk of rebleeding. Obviously mixed emotions with this decision. Relieved she doesn’t haven’t to endure more poking and prodding. The fact her liver continues to heal is in her favor to decreased her risk of bleeding. We feel very blessed she feels good and is not requiring taps and tolerates her medical management with minimal side affects. She will have a break from testing for a few months so going to enjoy this fall as much as the pandemic allows. Again thank you, thank you,thank you for the support. I hope everyone is well and safe. We hope to not have a need for further updates for a while. No news is good philosophy. 
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