Journal entry by Eva Berk —
It’s been a busy 24 hours.
Saturday Eva enjoyed a visit from Nana, Auntie Shelly, and Uncle Dan. They played in the play room, did some crafts in the One Mission Resource Room, and Eva enjoyed playing with the lap harp they brought as a gift!
A few hours after they left, Eva had a breakthrough seizure. She’s fine now, but it was a scary time for Mom and Eva both. She was able to let Mom know something wasn’t right, so Mom pressed the STAFF ASSIST button and everyone came running to help. Our room and the hallway was full of doctors, nurses, respiratory therapists, and other hospital personnel as her seizure was controlled. She got a big dose of Ativan to stop the seizure (which lasted just under 3 minutes), so after it passed she was quite silly for the team as they administered basic neurological performance tests.
Other than being loopy from the Ativan, Eva rebounded quickly, although both she and Mom talked a lot with our nurse and the oncology team about how it was scary. Eva reports feeling out of control during her seizures, and doesn’t like how she feels like she can’t talk or move her body while they’re happening. We talk about how it’s her brain sending mixed up signals to her body and that’s why she’s not able to do what she wants, but that’s a big idea for a little kid to understand.
After, Mom and Eva snuggled a lot, extra labs were drawn and sent to check for any unexpected causes (none have come to light so far, so this is likely just continued irritation from the remaining leukemia, which we have a plan for - CAR-T). Dad got here very quickly after getting Joey squared away with Grammy and Grampy for the night, and we waited for next steps.
Around 1:30am we were called down to MRI for a quick 10 minute scan to be sure that there was no bleeding or clots in her brain. Eva did great (truthfully, she barely stirred from her deep sleep as we transitioned her to the machine and the test was done) and the initial read looks clear. We all slept in today since we were up so late last night!
No big revelations today, since her team will reconvene tomorrow, but here’s what we know:
- Her brain wants to seize. This is due to several factors (leukemia, the brain’s propensity to seize again after it has seized once, the need for a higher dose of her anti-seizure med due to growth/metabolism).
- She will have a 24 hour EEG tomorrow so they can get a picture of what’s happening in her brain that we may not be seeing. Is she having any strange brain activity or smaller seizures we are missing? This will hopefully show us.
- She may have a new anti-seizure medicine added on top of her current one, as we plan to head into CAR-T which we know can increase the likelihood of neurological reactions. Our team will talk to neurology tomorrow and come up with the plan.
- CAR-T is still our plan, and must be. Will it be delayed? We sure hope not, but we will know more after tomorrow’s EEG and team meeting.
So it’s been a lazy Sunday here, but Eva is eating her beloved baloney and mayo sandwiches and watching shows, and is about to crush a poor, unsuspecting volunteer in UNO.
The pictures with today’s post are what happens when a 6 year old steals your phone and wants to document the world around her 😆.
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