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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

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Jiena's bone marrow biopsy

Apr 9, 2014 2:44pm

Jiena and Mason had an hematology appointment yesterday as well as lab draws. Both kids were entertained very thoroughly by Amplatz' Child Life Specialists that neither made a peep during the blood draws- not even Mason, who hates his port being accessed! We found out that, from Mason's biopsy at 1 year old, his bone marrow cellularity (the number of blood cells made by his bone marrow from 90-100%=just born to 0%=not alive) is only 20-40%. That's the same as someone who is in their 60s to 80s. Their hematologist says there's nothing to worry about though because he's still producing enough blood cells to function. Jiena's is at 20%. Jiena was to have a bone marrow biopsy as well, but literally with only ten more minutes before heading down to sedation, we caught her munching on her after-biopsy snack so we had to cancel and reschedule it for this morning instead. Fasting before sedation is hard.

The biopsy today went well, but it didn't quite start out that way. First, we forgot to put numbing cream onto Jiena's arms so the hospital used the "J-Tip", which is a fast-acting lidocaine. It doesn't hurt, but it makes a loud popping noise that scared Jiena. Then, it took three pokes before they got an IV in. Jiena was in tears by the time they were done. I'd told the doctor about past pain that she'd have so the doctor made sure to give her a bit more numbing shots than usual at the biopsy site. Jiena woke up very upset and restless so some Tylenol was given as well. For what she went through, she got to pick out two prizes from the Bravery Box and she got a cherry Icee. We're back home now and she's doing well. If the results come back good and there's no major change in cell mutation, her hematologist says we may be able to hold off on doing it for a year! Prayers are much appreciated!

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Healthcare Facility

Children's Hospitals and Clinics of Minnesota

MN
United States