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My Story

Welcome! We know how hard it can be to keep in touch with everyone that we love so we've created this to keep friends and family updated about our lives.

Visit often and write us a note in our guestbook. We appreciate your support as we fight Fanconi Anemia.

Donations are accepted at https://www.youcaring.com/PrayersforJienaandMason. Thank you.



Fanconi anemia, or FA, is a rare, inherited blood disorder that leads to bone marrow failure. It prevents bone marrow from making enough new blood cells for the body to work normally and can also cause bone marrow to make many faulty blood cells. People who have FA have a greater risk than others for developing cancers and many who have FA eventually develop leukemia at a young age. Although FA is a blood disorder, it can also  affect many of organs, tissues, and systems. Children who inherit FA are at higher risk of being born with birth defects.

Jiena was born with a somewhat duplicated thumb and has never been a good eater. She's always been below the 3rd percentile for weight and height and has declared herself a vegetarian tiger. She's outgoing, loving, and exceptionally compassionate. Her diagnosis came at the age of 5. 

Mason was diagonosed with FA at 30 weeks in-utero. He was born with a shortened radius on his right arm, no thumb on his right hand, a barely-hanging-on thumb on his left hand, and an esophogeal atresia with a tracheo-esophogeal fistula. He also has a bicuspid aortic valve in his heart and a subglottic stenosis/webbing in his trachea.

This is our fight to live.


Journal

Notifications

Initial evaluation

23 hours ago

After the initial evaluation, Mason's new gastric surgeon came in to tell us their findings and it wasn't good. Mason, he said, is VERY complicated and will need numerous surgeries and chemo to get him to no longer needing a trach and feeding tube. He said he's not pushing anything on us and if we want to not do anything, that was up to us, but with Mason's complexity, he'll probably always have respiratory issues and need a feeding tube unless we do something about it.

The first step is a CT scan of his lungs so they can assess the damage that is there. We were told his right upper lung is damaged due to aspiration, but the new doctor says that the part of his lung that is damaged is a very unlikely place for aspiration to reach so he believes it may actually have been caused through his past surgeries. Until he mentioned that, I'd completely forgotten that the second time Mason had surgery, his old surgeon had found that his right lung had "glued" itself to nearby organs and had to be "peeled away" so they could fix his esophagus (for the second time).

This new doctor was very thorough with all of the issues Mason is currently facing and all the ways they could be resolved. None of them will be easy and, because of his FA, could actually shorten his lifespan. It basically comes down to 1) do we give him as "normal" of a life as possible through surgeries while putting him at cancer risk and shortening his lifespan or 2) do we leave him be and he'll be dependent on a trach and feeding tube forever and eventually need a mouth suction like when he was a baby again because his esophagus will completely close and he'll no longer be able to swallow his own saliva? I cried in front of all the doctors and nurses. I don't know what to do. I wish things could be easier for our little guy.



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Healthcare Facility

Children's Hospitals and Clinics of Minnesota

MN
United States