Ellanor’s Story

Site created on June 13, 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 encouragement.

Here is a link to a GoFundMe page for Ella for those who feel led to contribute.

https://gofund.me/004dafa8

What started as a series of unusual infections for Ellanor turned into a hospital stay in June of 2020 where we learned that her neutrophil counts (the body’s front-runner defense against bacteria) in her blood were severely low. For six months we worked with the hematology department at Children’s Hospital to try to determine a root cause of this deficiency. Ella continued to deal with infections on a regular basis. Testing found that she has a genetic mutation that causes neutropenia, and she has been diagnosed with ELANE mutation Severe Congenital Neutropenia. Because of the severe nature of the infections she is prone to she started G-CSF shots in December of 2020 to stimulate production of her neutrophils enough so that her neutrophil count can come above 500 and keep her body in a better position to deal with daily life. The G-CSF shots have greatly improved Ella’s quality of life, keeping her neutrophil count in a much better position to fight off infection. Hematology continues to monitor her closely, and a she had a bone marrow biopsy to get a better idea of the exact nature of her neutrophil production. The care at our local hospital has been excellent as we navigate Ella’s daily life; we’re grateful.  Thank you for your prayers for Ellanor. 

Newest Update

Journal entry by Caleb Siefkes

As we approach November again, we are reminded of the pain Ellanor dealt with only a few short years ago, but also the amazing bounty of love and care shown in so many ways to Ellanor and our family! The end of November will be the 2-year point since Ellanor's transplant! We are reminded and amazed every day at the effectiveness of her procedures and the quality of life she now enjoys. All the little cuts and scrapes she has gotten from running around barefoot all summer have healed normally!
 
Her doctor visits are becoming few and far between. She will be on an annual schedule, probably for the rest of her life, but such a welcome change from the previous normal. At this point, her days are filled with running to catch up to her siblings and bossing them all around. She isn't one to take a lot of guff from her older siblings (she can absolutely hold her own in games and competitions), but she has a heart of pure tenderness that overflows with love for her people. She is also super excited to do her schooling along with her siblings around the table each day, learning her letters, numbers, and coloring her workbooks.
 
Last night her legs were hurting again, and she needed them massaged to fall asleep (something we had to do each night pre-transplant). I am happy to say that this seems to be your typical growing pains and not related to neutropenia!
 
It has been absolutely crazy and wonderfully amazing at the same time. That's life these days!
Thank you all once again for everything!
The Caleb and Katherine Siefkes Family.
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