End of July update

Hello everyone,

Rosie has been enjoying her summer and we hope you all have been too! She celebrated her 6th birthday just a few days ago and got to enjoy a party with her friends. It was so nice to feel normal for a little while. 

Today she began her second “chunk” of maintenance. Maintenance is broken up into three month “chunks” and will be the  phase that she is in until she ends treatment in 2027. Each three month section begins with a sedation day and a steroid pulse. 

Rosie’s sedation went very well today. However, about five minutes into the drive home, she developed severe head pain, broke out into a sweat, and began losing consciousness.

We rushed back to the clinic where her team found her blood sugar had dropped to 34. After a rough turn where she couldn't keep oral fluids down, they had to access her port again for IV sugars and fluids.

It was an absolutely terrifying couple of hours, and she has been officially admitted for overnight observation. She’s perking up and her numbers are looking much better now. 

We are so incredibly grateful to the nurses, medical assistants, and her doctors who all rushed to help her and helped to calm me as well. 

Her doctor has also decided to run a few tests to see if there is anything we need to change about her medication to ensure this doesn’t happen again.

Thank you everyone for your continued support and love 🧡🎗️