August 04, 2022

Besides the staph infection from the leukapheresis catheter, the side effects from chemotherapy and the positive covid test (again), Carly also has pneumonia. 

In addition to hearing loss and nerve damage, another side effect of the Cisplatin chemo is lung damage, and a specific type of rapidly progressing pneumonia. The down side is the fact that lung damage is also a side effect of a covid diagnosis.

Carlene has needed to have her fever medically managed around the clock. She has been burning through platelets and has had 8 transfusions since being admitted last Thursday. She has also required blood transfusions and now nebulizer treatments to support her lungs. 

Today we had an echocardiogram and ultrasound to assess if the infection from the catheter is present in her heart valves because that is where the catheter was tunneled. We were informed by infectious disease that the nature of her infection will require a minimum of 4 weeks of IV antibiotics. 

She still hasn’t been eating. Today marks 10 days since she’s taken food by mouth. These are the basic points of her current condition. I could elaborate in many other ways about the specifics, but I’ll save that for a more in-depth update when there is more definitive information available. 

Carlene is struggling. We need all the prayers and well wishes we can get right now. Find links Carlene’s journey through treatment for stage 4, metastatic retinoblastoma at or on social media with the handle @coinsforcarly. Email updates are accessible at