Adelaide ’s Story

Site created on February 12, 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 Caitlyn Bolozky

I haven’t updated here in quite some time, so here is an update on the summer. Adelaide had a busy summer!  She started off going on a road trip with her dad to Colorado!  She traveled to key west, went to baseball games, attended a week of camp, had summer school,  pool time and more!  In between all the fun, we fit in occupational therapy (which she has graduated for now) to help with the tremor in her left hand. She even learned how to tie her own shoes!  Vestibular therapy is still ongoing to help with dizziness and balance. It seems to be helping with the frequency of her dizziness, but the therapy itself can trigger some pretty bad dizziness and vomiting. She has been a trooper and continues to work very hard!  

We did have two trips to the ER for MRI imaging because of symptoms over the summer. Whenever she has a lot of symptoms over a few weeks or bad symptoms two days in a row they like to do quick imaging to make sure they don’t see any changes. Each ER trip resulted in stable imaging and we got to go home!

Adelaide started school on Monday with a 504 plan and had a very good week!  She only had two days of dizziness, but only missed one morning of class due to it!  She loves her teacher and friends and I get to see her smiling and having great days, which makes my day great! 😊  

This Thursday, August 26 she has her big, detailed MRI to see what the tumor is doing. Hopefully, we continue to get stable results. We meet with her neuro oncologist  immediately following the MRI for results.

We are seeing the feeding and swallowing team again to evaluate her swallowing because of the location of the tumor. There have been a few instances of coughing/gagging on spit/food, so they want to make sure there is no aspiration issues. 

In November, we have a two hour tele-health appointment with a neuropsychologist to see if she needs further cognitive/behavioral testing due to her tumor. 

Overall, Adelaide is doing great!  She is still getting to do a lot of normal kid things, and for that we are so grateful!  She handles all the hospital trips, pokes, MRIs, dizziness, and puking with grace and resilience. She truly is an inspiration!  Please keep her in your thoughts that she continues to do well! 

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