Happily Ever Avery // Fever is Gone, Neurotoxicity Setting in Now
Thanks to the Toci, her fever broke! She has been fever free for 18 hours. The bad news is we’re now seeing the CAR T therapy neurotoxicity.
Our granddaughter was diagnosed with Pre B-Cell Acute Lymphoblastic Leukemia at the age of 7 weeks. Follow her journey as we, her family, choose to stay positive as we continue to believe in our Happily Ever Avery.
Thanks to the Toci, her fever broke! She has been fever free for 18 hours. The bad news is we’re now seeing the CAR T therapy neurotoxicity.
Her CAR-T doctor made the decision to give her Toci (Tocilizumab) to manage CRS without adversely affecting the CAR T-cell therapy.
She’s mainly just miserable and uncomfortable after being in bed for days, cold with chills, and exhausted from the fever.
Since coming back down to the Bone Marrow Transplant Unit, she’s been much more comfortable. In fact, she’s been sleeping most of the day.
The good news: Avery’s back on the BMT Unit! The nurses greeted her as they rounded the corner and Avery smiled for the first time in days.
Here is a quick late night update. Avery is sleeping in Mom’s arms right now. Avery, Mom and Dad are all incredibly exhausted.