Another long day.
Thankfully Avery seemed moreย comfortableย today.
She didnโt cry much and it was simply a matter of finding the right position so she could sleep.
She absolutely did not like theย nose cannula, but she would allow it for the most part.
Otherwise, she did well enough on the aerosol oxygen.
Well, until this evening. She just couldnโt seem to get her O2 levels out of the lower 90โs, so they upped her oxygen levels.
After conferring with her CAR-T doctor, the decision was made to use theย โmagic Tโย medicine.
The Tociย (Tocilizumab)ย was started around 9pm and will run for an hour.
Itโs not a quick fix, but we do hope to see some improvement over the next couple of days.
To help answer some of the questions weโve been getting aboutย the feverย and theย โmagic T,โย here is a bit of information I found to help explain:
Is this โnormalโ?
The two major adverse effects ofย CAR T-cell therapyย are cytokine release syndrome (CRS) and neurotoxicity.
CRS can happen in almost every patient undergoing CAR T-cell therapy and tends to happen almost immediately after therapy.
CRS is triggered by the massive release ofย activated T-cells.
Respiratory symptoms are common in patients with CRS.
Fever is an important clinical sign that should raise the suspicion of CRS in patients receiving T cell-engaging therapies.
What is CRS?
Cytokine release syndrome (CRS) is a systemic inflammatory response that can be triggered by CAR-T therapy.
What can Toci do?
Simply put, Tocilizumab helps manage CRS without adversely affecting the CAR T-cell therapy itself.
I tried to put it in as much โlayman termsโ as possible considering most of the information available on it is from medical publications and studies.
Basically, weโre hoping this helps Avi feel better soon.
This picture is from a rare moment today when her OT was able to get her to sit up for an extended time. (Weโre trying to avoid muscle atrophy from lying in bed all day)
She was excited about seeing Mom and Dad uponย their return to the hospital, as well as two of her favorite nurses at the door.
She gave us the slightest smile and wanted to sit up so bad, but was so exhausted.
Seriously. She inspires me every day with her strength and resilience.
Pray we begin to see a good turn in her condition soon.
