Callie travelled to Texas; got admitted in Texas Children's Hospital and took her modified cells. In the following days, she began to feel awful. She threw up often, suffered bowel issues. Her oxygen level dropped and abdomen got swollen. Scans showed a fast progressing new tumor on her neck. Unfortunately the treatment in Texas didn't seem helpful.
Callie got transferred back to Cincinnati Children's Hospital as fast as possible due to her fast growing tumors. She started radiation therapy to her neck and liver, and a trial drug named venetoclax combined with chemotherapy. Her abdomen is still swollen and hurting. She has been fighting this very aggressive cancer in all pain and tears with her all strength. Doctors don't think she can make it till Christmas if the trial drug doesn't work. This is definitely not what Callie's family has been expecting to hear in September. They feel completely crashed. So do I as I see them going through disrupted cancer life. They are getting prepared for hospice service for kids. The word hospice has put a lump in my throat. The new trial has to work. It's recently my only wish.😭 They will keep fighting and looking for any options, meaning they are not giving up. However, Callie deserves to be home, to have more time to play, giggle, and enjoy whatever she wants together with her family. I am so sorry that she thinks the hospital life is her normal and she is oblivious to what's happening to her. She misses home, home misses Callie. It drives me crazy doing nothing about her cancer.
Venetoclax is used against a range of cancers. It is the most effective in combination with other drugs [https://www.neuroblastoma.org.au/appeal/researchappeal]. I found the relevant clinical trial on the Cincinnati's webpage. My heart goes out to tiny but mighty Callie and her lovely family. 💛🎗️
Clinical Trial: https://www.cincinnatichildrens.org/service/c/clinical-trials/studies/M13-833