There Is No Normal

Oh, dear ones, you know Chase by now – he likes to keep it interesting. And wow, did he ever keep it interesting this weekend. Here’s a small view from the Chase Away Cancer Facebook page. (which was as far as I could get until tonight…)

Saturday, April 24, 8:18AM –

This boy… he likes to keep it interesting for sure. Bob and I were wakened at 6:15 by a panicked sibling and the shout of a seizure. Logically, we know it can’t be cancer growth, but there’s little of logic in those moments – especially when the seizure didn’t leave him like it should. It was the longest seizure I’ve seen him have, and he didn’t truly come back to us until about 30 minutes later, laying buckled into a Stryker in the ambulance. Can you imagine waking from a sound sleep to find yourself there…an oxygen cannula being placed in your nose? We are in the ER and he’s finally coming back to himself. (Read also: sassy)No idea what caused this or what comes next…Moment by moment.

Saturday, April 24, 10:57AM –

Chase is coming home. He’s still skipping beats – struggling with his words and memory – but he’s stable right now. They’re putting him on another protection medication for the weekend (in addition to his regular medication). We’ve been told it will wipe him out, but Lord willing, it will keep his brain from seizing. And that action feels so needed right now. I can hardly describe what it’s like to watch a living, breathing person whose eyes are open, but who, in no way, is actually present. Whatever this was actually held on to him for so long and with such intensity that he has burst blood vessels in his right eye.Our local hospital and Lurie have been talking and we will follow up with his downtown teams on Monday and plan next steps. The big question is why.And how do we prevent it happening again?As the ER doctor said almost laughingly… “I suspect there are no easy answers”. Moment by moment. [picture: He wanted you to see his IV]

Sunday, April 25, 9:24PM –

Thank you for all the love and prayers, dear ones. Tomorrow will be telling as we will be talking to the teams: I’m hoping that by the end of Monday, there will be some clarity as to what happens next. As far as we could see, Chase had no seizures today and the new medicine they gave him is making him sleepy and rage-y by turns. So, as you can imagine, we are all really thankful that the prescription is both helpful AND short term. Chase was afraid to fall asleep last night and Karsten (9) said he watched him all night long in the room they share. Aidan has needed extra quiet time and isn’t ready to talk yet and Darcy came to me in tears telling me she can’t stop hearing him screaming for her. You see, when Chase sensed his seizure yesterday morning, Karsten saw it first, and Chase, knowing he would never make it to the lower level where Bob and my room is located, screamed for Darcy even as he struggled to keep his balance. It was the siblings who were on the scene first, they waited for emergency responders outside the house, packed a bag for me as I hopped onto the ambulance, and a dozen other little things they’re only processing now. I’m so proud of their courage in the face of these hard things. And it is taking words and tears and time, but we will keep the pieces of broken in our hands – together – with the heart prayer that some day all of it will be beautiful. Moment by moment. [picture credit: Darcy… the sister, not the stuffed]

Monday, April 26, 7:15PM –

After several long phone calls, there is a next step… At this point, the neurology team is certain that Chase’s seizures are not related to the micro bleeds or cavernous malformations, however, they are definitely concerned about the strength and duration of this weekend’s episode. So Chase needs to be admitted to the hospital for a couple days of EEG monitoring. Then, depending on the EEG results, he will most likely need further follow up and more medication. His extra rescue drug ends tonight and the doctors said to expect his recovery to continue over the next several days. Guys, even his muscles are sore from convulsing and remaining rigid for so long! It’s absolutely crazy. Today, we attempted his school work today and he tried so hard, but it’s obvious he’s still very much recovering from a trauma. So incredibly thankful for virtual and at-home learning in these strange days when we don’t know exactly what we’re fighting. When Chase has had an active cancer, it is a nightmare, but it’s also a clear enemy. This, where there’s no known adversary but every part of him struggles, this makes me crazy. I feel my mama heart beating hard, wanting control… anything to make it right for him… to figure it out for him. I have trouble relinquishing control when I know the boundaries. This? Honestly, this undoes me.And in the meantime, we watch… all of us. All the time. The closest thing I can equate these days to is the season when we had crawling infants and toddlers in the house – you never turn your back, watching for every sharp edge, hard surface, electrical outlet – always on high alert, watching out for what they don’t know to watch themselves. And he’s too often quiet with glassy eyes.It all feels broken. I got on the phone and cry across the line: CAN YOU FIX IT? In the final conversation of the day, the neurology team had a heart-breaking and yet needed reminder for me even as I wanted an isolated answer to my isolated question. The reminder is this: Chase’s brain knows damage deeply in all its parts, and it has known unrelenting trauma for the better part of a decade. His EEG will never be normal and his brain will never completely recover from all it has known – even if there’s no clear adversary. Dear ones…There is no normal. There is only the now. And we WILL choose joy in it. Watching and waiting… moment by moment.