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Mason’s 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.

Latest Journal Update

Bone Marrow Biopsies 2015

Yosemite. California vacation, Aug 2015

Yosemite. California vacation, Aug 2015

Lea más
Jiena and Mason both had bone marrow biopsies done two weeks ago and yesterday, we received their bone marrow chromosome test results. Jiena's blood counts have fallen significantly and, although they are very low for the rest of the population, they're pretty decent for someone with FA. Unfortunately, the number of mutated cells (clones) in her bone marrow have expanded, which is why her counts dropped (she has less normal bone marrow cells to create normal functioning blood cells). She has been put on close monitoring in case she develops Myelodysplastic syndromes (MDS), which can quickly lead to AML, a type of leukemia. 

Jiena is at the prime age when most kids with her type of FA start to develop leukemia so her next big blood draw has already been scheduled and those results will determine whether we need another bone marrow biopsy right away or if we can wait until March, which is when her next biopsy is now scheduled (instead of one year out as we'd hoped). 

Mason's results all came back that he's very healthy and there are no issues.

I honestly don't know how I feel. We've known since Jiena was 5 and before Mason was born that this would come so we've researched and prepared ourselves as much as we can, but now that it's really possibly just around the corner, I'm lost and in very much in denial. A very big part of me is hoping these results were a fluke and Jiena's drs are just being overly cautious and that we'll continue to have many more years with no problems. Unfortunately, with FA, all we can do is continue to wait and see and this waiting game is getting to be very tiring for us.

In the meantime, we are all doing relatively well. Jiena has a rash on her neck that was becoming very big and angry, but we got some antibiotics for it and her neck is now looking much better. Mason has been fighting a respiratory infection these past few days and he's not 100% yet, but he's getting there. He spent some time up and on his feet today, which is a great improvement from the past few days. Hopefully, it's all uphill from here.
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6 Comentarios

leona hensel
By leona hensel
Dear Maly, thrilled to capacity that Mason is doing great. Jena I know is a much more scary with the results of her biopsy so we will be be praying 🙏 fervently for her next big blood draw and to anxiously await the results of that blood test with you and to let you know that in the meantime, if you want to talk, or just want some extra prayer 🙏 my team and me are here for you. We love ❤ you and we're praying 🙏 for you. Your Bartlett Illinois prayer 🙏 team
Bonnie Ermilio
By Bonnie Ermilio
Hi, Maly!! I'm sending LOTS of hugs and prayers for Jiena to get better!!!
I'm so happy to hear about Mason!
Maly, I'm sending prayers to have strength to take care of everyone.
1 person hearted this
Nina Johnson
By Nina
Thanks for the update- it's good to hear how you and the kids are doing.
1 person hearted this
m hicks
By m hicks
I am praying for your family, Maly. May He bless and hold you in his tireless arms, may His strength be your strength. Love-
1 person hearted this
Anne Green
By Anne and George
Now I know why your family has been so heavy on my heart these past few weeks. Love and prayers and know we are only a phone call away to come help or listen or,,,Love and God's blessings on you all. He is holding you all in the palm of his hand.
1 person hearted this
Angela Bedoya
By Angela Bedoya
I understand how hard this is, the waiting and the unknowns. God's got this! Praying for you all! Love you guys! <3
1 person hearted this