Another long day.
Thankfully Avery seemed more comfortable today.
She didn’t cry much and it was simply a matter of finding the right position so she could sleep.
She absolutely did not like the 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 couldn’t seem to get her O2 levels out of the lower 90’s, so they upped her oxygen levels.
After conferring with her CAR-T doctor, the decision was made to use the “magic T” medicine.
The Toci (Tocilizumab) was started around 9pm and will run for an hour.
It’s 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 we’ve been getting about the fever and the “magic T,” here is a bit of information I found to help explain:
Is this “normal”?
The two major adverse effects of CAR T-cell therapy 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 of 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 “layman terms” as possible considering most of the information available on it is from medical publications and studies.
Basically, we’re 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. (We’re trying to avoid muscle atrophy from lying in bed all day)
She was excited about seeing Mom and Dad upon 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.
Follow Avery’s journey with Leukemia here
How can you help from home?
First, prayer. We need to continue to storm the gates of heaven for Avery.
Their biggest tangible needs are food and money. Even with insurance, the costs are undoubtedly going to continue to add up.
For starters, we set up a GoFundMe with a tentative amount that will most likely go up as we continue: https://www.gofundme.com/f/help-baby-avery-beat-leukemia
To help them stay fed while at the hospital, we’ve found DoorDash gift cards are best: https://doordash.launchgiftcards.com/
Email for digital gift cards here: [email protected]
Want to send cash straight to Chey through Cashapp? $CheyenneShipwash
Or you can send it straight to Nic through Venmo: @NKiernan
Want to send tangible gifts? We’ve set up an Amazon Wish List.
Purchase a shirt here: Happily Ever Avery products
Facebook page for updates: Happily Ever Avery
Instagram handle: @ourhappilyeveravery
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