Genevieve’s Story

Site created on March 18, 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.

Newest Update

Journal entry by Renee Steffen

Happy New Year! We made it through the rest of 2022 without a hospital stay or relapse! Genevieve had a couple bouts of sickness with fever that raised our anxiety levels, but turned out to be “normal kid” sickness, thankfully. In those cases, we will still have her blood drawn and urine tested to ensure she is not starting hemolysis and if so, to catch it early.  It is such a relief to see her blood test within range. 
She does this thing when she is sick that brings back sad memories of when this all started- She crawls up under my desk by my feet because the space heater is on. That’s it. Without getting into it, it brings up feeling of mom guilt and triggers me to want to rush her to the hospital. It will be a great therapy session one day to talk about that one. 
Genevieve is in the prime age for Christmas- 7 years old. She wants all the cool toys (and mostly got them because I went overboard) and the magic of Christmas just surged through her little body. The kids convinced me we needed the elf on the shelf to come this year. It was the first time Ruby the elf came to the house and we had fun with it. Genevieve said it was the best thing of her mornings. The Holiday celebration were wonderful, especially after a couple COVID years, it was nice to feel like we had a normal Christmas. Except George got COVID so we had our third year in a row celebrating NYE at home. Maybe next year we will go somewhere. 
Life seems to be settling down now for the winter.  Sometimes we talk about Genevieve’s sickness, and she’ll repot that her “pee looks good 👍!” But we mostly don’t think about it, mostly... 

Patients and caregivers love hearing from you; add a comment to show your support.
Help Genevieve Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Genevieve's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top