Ella’s Story

Site created on December 20, 2023

In the fall of 2023 Ella was diagnosed with a growth hormone deficiency and had also been getting terrible migraines. She went in for an MRI to get answers on what was causing these issues. On December 12th we got the MRI results back and found out she has a brain tumor. Her tumor is a adamantinomatous craniopharyngioma tumor that is growing out of her pituitary gland. There is currently no cure to shrink or stabilize the tumor other than removal or radiation, which would both cause some damage to her brain. We are currently trying a trial drug called Tocilizumab so hopefully stabilize the cystic aspect of her tumor (which is half mass and half cyst). Ella currently goes in every two weeks for an infusion and is doing well right now!

Newest Update

Chugging Along

Journal entry by Joelle Dwyer —

Ella has been feeling so good the last few months and we are incredibly grateful! She’s had 4 infusions and her body is tolerating the drug really well. All of her labs look good, she’s had no reactions or headaches, and she doesn’t mind the port or being accessed. It’s all smooth sailing so far! 

Her next MRI is scheduled for May 21st and we should know if the drug is actually working at that point. We are praying and hoping for stabilization or for the tumor to shrink (which would be a miracle!). 

This journey can be so draining but we feel so much hope, love and support. We have found some incredible organizations that have brought joy, encouragement, and helped us along the way and we are forever thankful for them.  God has truly been so good to us and so faithful. Thanks again to all of you who have been there for Ella and for our family, who check in on infusion days, send us encouragement, are with Ella each day at school and give her so much love, and pray for us each day.  Our tribe has been incredible. 


Read More of the journal titled "Chugging Along"
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