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Dear ones,

Thank you so much for your patience and faithful prayers for Chase and our family over this summer and fall. The Chase Away Cancer site was hacked at some point over this period of quiet and with life being busy and my IT support being awesome and busy (it’s Bob… Bob is my awesome IT support) the weeks passed. But now, the site is finally back up and running and we are still here.

Stay tuned for an update on Chase –

MbM.

Ellie

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.

The MRI has not been fully read and released yet, but according to Chase’s neurosurgeon this afternoon, Chase’s spine has already been declared “clear” and it’s likely (based on the neurosurgeon’s personal viewing of the results) that Chase’s brain is likely clear of cancer as well. And while they will be paying special attention to some areas like the cerebellum and brain stem, searching for potential explanations for Chase’s ongoing weariness, the areas that they’re always monitoring haven’t changed enough yet to merit surgery.

I’m so thankful for today and the peace that surrounded it. Dear ones, it seems we are in a season with no actual cancer. Many complications, yes, but no cancer. I have no idea how long this will be… it could be that it was only from February until all the different teams officially read the MRI in the next week or more, it could be until his next thyroid ultrasound in June, or it might be for a longer time altogether.

I would never ordinarily type out this season gut feeling, but I’m writing it tonight in the wake of these last hours when you’ve sat with us because every hour we have is precious, dear ones. There is much we continue to wait on with Chase… I think it will be that way until heaven. We will always be watching things and waiting and not having the exact answers we crave. And yet, we will never stop giving thanks for the answers we are given and the peace the comes regardless.

“Tell them I was brave and it’s done now.”

(from my sweet boy, himself)

Moment by moment.

It was one of those days … the kind that spirals like a comic farce. 

I could feel the Spring sun on my face as I stood on the driveway, turned back to the house, wondering if I should walk back to the house. 

“You have to come out, Chase! We need to go!”

I could hear his voice yelling from behind the front screen door. “Why do we have to do this anyway? I don’t want to get in the car! This is stupid!”

You see, Chase is having a full brain and spine MRI on Monday; a test that requires sedation for him…which requires a COVID-19 test. And so, in spite of two diagnosed cancers, endless surgeries, procedures, and more medical drama then I can hardly wrap my head around, he holed himself up in the house with angry words and little growls because he didn’t want to get his nose swabbed at the outpatient facility. 

And isn’t it interesting how the little things feel really big when life is hard and hurtful?

“Chase, we need to go!”

“I’m not wearing clothes.”

“It’s okay to go in your pajamas. It’s a drive through test. But they need to be clean pajamas, okay?”

Growls. “What is it with you and clean clothes?”

Another breath on the drive, the spring air cold and clean in my lungs.

“I don’t have any shoes!”

“Where are your gym shoes?”

“I don’t know!”

Minutes slipping by in the fight. We will be late for our test time slot now.

Deep breaths.

“Just slip on your slides then!”

“I don’t know where those are either!”

“Did you check the shoe zone?”

“MOM!” Another growl.

I can feel my heart pounding and I want to lose what little patience I have, but I know he’s nervous.

And then he stomped out of the house, mismatched (albeit clean) pajamas on his body, his winter coat over his shoulders, and his younger brother’s gray canvas shoes on his smaller feet, which made an alarming clomp-clomp sound when he walked. 

Under his arm is tucked his favorite tie-dye stuffed animal – a toy he named “Darcy”, after his sister. 

I look at him stomping towards me. If this were a different day and tempers weren’t so tight and patience thin, I’d laugh and ask him where his mother was. 

But not today. 

He worries the whole way to the outpatient facility and I spend much of the drive, one hand on the wheel, the other stretched long to where he sits behind the drivers’ seat, holding his cold little hand in mine. 

“I’m scared.”

“I know.”

“I can’t be brave when I’m scared. I don’t think I can be brave anymore.”

“You’re wrong, my sweet boy. Brave means you’re scared and do it anyway. Doing something you don’t want to do makes you the bravest of the brave.”

We arrive. 

It’s not a drive through test anymore. So, we walk in; Chase, me, our masks, our worries, and stuffed Darcy. We look as bedraggled as we feel.

And of course the test is short and sweet and not so very terrible at all – all things considered. 

The nurse, in all her layers of protective visor and mask and gown and gloves, backs away and says “That wasn’t so bad, was it?”

And Chase, sitting on my lap, lowers his head like his still-lowered mask and bursts into tears. 

Not angry tears or scared ones, but true, sad, tears – the kind that make you sob quietly while drops roll down your face. The brokenhearted kind of tears.

The nurse looked at me, and I looked at her, and then I hugged him close, trying to kiss his head before I remembered my own mask, and we let him cry. 

It was only a moment, but I realized that Chase needed that moment. Because he wasn’t angry, and he wasn’t scared anymore. The tears were a pure release of emotion. 

He cried because things weren’t as they should be. 

It wasn’t the test. 

It was what the test stood for. 

One more thing. 

One more reminder. 

He is broken.

We are all broken.

It is okay to grieve that reality – to acknowledge that the tears aren’t always about what is happening in the moment, but for all the happenings in all the rooms – the heart cry that all is not right in this place and it won’t be right for a while yet, even though we know Who ultimately wins. 

The clinic room was quiet and then we dried the tears and it was done and we left, Chase, me, our masks, and stuffed Darcy.

“I was brave after all.” His bruised little hand slipped into mine as we walked out the doors.

“I think you can be brave just a little while longer, sweet boy.”

Moment by moment.

_____________________________________________________________

On Monday, April 19th, we put a pause on thyroid cancer concerns for a moment as Chase will undergo his brain and spine MRI to continue monitoring the damages and threats related to his brain cancer. Thank you so much for keeping him in your prayers.

This post is specially dedicated to all those who are being brave just a little longer, and most especially to Angel, Katie, Logan, and Patrick