Author: Ellie

On this Thursday, also known as “Star Wars Day”, Chase was in and out of surgery in a relatively short time as hospital days go, and we were able to bring him home.

We love the surgeon who worked with him today – not only is she an amazing doctor and advocate, but she’s worked with Chase before – sometimes even in very difficult moments. Before Chase went back, I sat with the surgeon and she explained things about the possibility for multiple incisions or cutting into muscle, but in the end, this boy (who does so much the hard way) had a blessed moment of ease: the implant was in one piece, so he only needed one incision and the rest of the area, both inside and out, was left virtually intact. (less stitches are always lovely, right?)

And then they wheeled him back, and he was afraid, but peaceful too. They stopped at the white doors that mark the line between parents and staff and I kissed his fuzzy head and told him I loved him so much. And as he passed through the doors – like he’s done too many times before – I cried.

I cried because the moment of separation – that knowledge he would be facing a cold operating table and a scalpel and I wouldn’t be there to hold him – never gets easier. But I also cried because these last two weeks have felt like the outside of enough and I was just so, so relieved that this was (hopefully) the last appointment for a little while. But regardless of what comes next, like Chase said when post-op didn’t include goldfish crackers: “It’s okay. We’ll just roll with it.”

Thank you for rolling with us.

Moment by moment.

Dear Ones,

In truth, I’m still trying to find the words to put this last week together in my own heart and mind, so this may feel disjointed, but hey, you’re on this adventure with us, right? (and we are so thankful for you)

As I last wrote, Chase had his 33rd MRI on Monday morning and we were scheduled to talk to his teams on Wednesday morning to discuss results… that’s when things really got interesting.

My alarm went off before the sun on Wednesday morning, the house was quiet, and I wasn’t looking forward to trying to wake an almost assuredly crabby Chase. So you can imagine my surprise when I opened the bedroom door to find a fully dressed Chase with his backpack over one shoulder. “We’ve got to go, Mom.” He was ready to go to the hospital because he hadn’t slept well at all. In fact, he went on to tell me that he hadn’t slept since around 1:30AM when he got up to get dressed, pack his bag for the hospital, and even take his morning medicines. That’s a lot of Chase to take in before coffee.

And then, before I could get to the coffee maker, he proceeded to vent. He was very upset because I’d let all the bugs in the house – the reason he couldn’t sleep. He grabbed my arm as I reached for the faucet on the kitchen sink lest the bug on the window ledge bite me. Dear ones, there was no bug on the window ledge. There were no bugs in the house at all.

Within thirty seconds, it was apparent that Chase was in the grip of some kind of simple, but profound hallucination that there were bugs surrounding him. 

Within thirty minutes, it was apparent that his speech was being affected as he slurred his sentences out of order, the worst part of which was that he knew the words weren’t coming out quite right, leaving him frustrated and growling, all while he swiped at bugs that only he could see.

Within an hour, it was apparent that his short term memory was involved and even now, he has little to no memory of those early hours of Wednesday. 

At this point, I had no idea if he was having some kind of seizure, stroke, or drug interaction. My only concern was keeping him safe and at peace. [note: Chase has just recently had his vision checked, so we could confirm early on that what he was seeing wasn’t anything in his actual eyes]

While the most acute symptoms of the hallucination were gone within those first few hours as we met with doctors and made calls and plans, Chase has continued to be tired and dizzy with somewhat unclear speech and occasional bugs in his vision, so Wednesday’s routine appointments grew longer and starting including more tests. Because he was stable, we were able to bring him home, but were cautioned to take him directly to our emergency room if anything changed.

Since those initial hours, he seems to get better every hour and every day, but his symptoms just didn’t go away and because of this, the last seventy-hours have been full of communications and tests, including finally putting Chase back into the MRI machine (number 34) early on Friday morning to rule out a sudden brain bleed.

We are so thankful to report that there is no bleed and absolutely zero changes from the Monday scan to Friday’s check. But we are especially thankful for that extra vigilance as Chase will be back under anesthesia later this week for a minor surgery.

Over the course of the week, all the teams have done such an amazing job, checking the levels of his various medications in his system, checking his chemistries and thyroid levels, his common blood counts, and even talking to the anesthesia team to see if anything unusual or different was used in last Monday’s procedure that might have caused what we’ve seen unfold this week.

And everything … everything checked out.

It is a relief to know what isn’t happening, and it’s a relief that he continues to improve every day. There is also the chance that it all comes down to that morning dose of medicine he took in the middle of Tuesday night (ie: so few hours after his evening dose) but Dear Ones, I genuinely believe that we might never know exactly what happened or why. This might just be one of the strange and difficult, scary, but not serious, aspects of long term cancer survival. And that realization is heartbreaking even as I shake my head and give a rueful smile around the words “Well, it’s Chase…” 

That boy. He likes to keep it interesting.

Perhaps we will know more tomorrow as he goes back to the hospital for a routine meeting with his oncology team. And perhaps we will know more farther along the way. But whatever and however we know or never find out, we will choose hope and press on. And I’m really glad that last week is over now.

Moment by moment.

[On Monday, April 24th, a day that feels one hundred days ago, Chase had a full brain and spine MRI and the results are in: the benign tumors (cavernomas, cavernous malformations) that sit in his brain grew larger, but are still not large enough to require surgical intervention – and it’s worth noting that further testing this long week showed these tumors (despite their growth) were not part of Chase’s difficulties. Small mercies. We are discouraged by the news of growth, but thankful for the stability too. No cancer was discovered anywhere in his brain or spine and the growth in his kidney remains stable.]