Madison’s Story

Site created on April 14, 2021

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.

Back in April 2019 Maddy went through a series of surgeries including an emergency colectomy, re-section, and creation of a "J-pouch".     They thought they had gotten all of the disease only to find out a short time later that it has spread to the remaining parts of her GI.  In 2020 she was scheduled to start a new chemotherapy to hold the cells at bay only to find out that she was entering peri-menopause due to previous medications.  Maddy successful went through 2 rounds of fertility drugs to freeze whatever eggs they could harvest.  Due to your support and generosity, she was able to freeze 6 eggs, giving her a chance to become a mom to her own offspring.    She then went back on a chemo regime that we quickly learned was not effective, while also beginning discussions with Cleveland Clinic about a potential intestinal transplant.   Yeah, its a thing!!   Who knew!



This week Maddy was admitted to Cleveland Clinic in Cleveland Ohio this past Monday due to some complications relating to her disease and other infections. She’s very weak, can’t eat, sleep deprived, throwing up, and her pain level has increased dramatically.   She is also running a fever and experiencing with breathing issues.   So far, the cause of her infection is not been diagnosed, but it seems to be in her lungs. They are running lots of tests to determine a course of treatment.   

We have been working with their Transplant team for the past several months to see if she might be a candidate for gut rehabilitation or intestinal transplant.  We are continuing to work with Sloan Kettering in NY as well in an effort to help address her short-term symptoms and establish a long-term plan.  


The transplant team will be doing an exploratory surgery sometime next week (tentatively).  They plan to biopsy her organs, assessing lesions/fistulas that might have formed, and most likely will remove her gallbladder.   They will map our her intestines so they can better assess rehabilitation or transplant options.    During the surgery, the may have to remove sections of her intestines or other organs as they learn more.   The findings will help us determine our next steps.    Since they are re-opening her mid-line scar and will be cutting through muscle, she will remain in Cleveland for 5-7 weeks for recovery.    


Maddy has been fighting this shitty disease since she was 8.   She is strong, but is her body has weakened over the last 11 years.    She would appreciate your thoughts and prayers, but would also ask that you reach out to her.   You can either call her, text her, send her some fun memes, anything to show your love and support. 🙏🏽❤️

Maddy Martignetti  |  404-583-2090


Newest Update

May 26, 2021

Journal entry by Athina Martignetti —

 
Update on Maddy. We are back in Cleveland. She had exploratory surgery yesterday and did great. Surgery was 6 hours. Followed by several more hours in recovery. Good news is they did not find any tumors or lesions.  🙌🏼GI  and other organs looked clean. Pouch looked good too. What that means is NO TRANSPLANT is needed!!!!! 

However, there was a lot of adhesions.  it bent a section of her intestine that should have been straight. Not allowing for even a scope to pass through.  
They fixed that, placed things back where it needed to be, biopsied from top to bottom as well as other organs too.      

Now we wait for  pathology/labs to come back and doctors to brain storm, figure out a plan to address the disease that still present. 

Today, she’s in an immense amount of pain.  Trying to get ahead of the pain to make her comfortable has been a challenge.  But, she managed to get out of bed, walk around her bed, to the hall right out side her room and back to bed.  For just having surgery yesterday, and the length of the incision down her midsection, that is huge. We are sooo proud of her!!!
Read More of the journal titled "May 26, 2021"
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