Tag: cancer

Over and Over Again

Dear ones, 

Chase will be having another surgery.

We are still waiting on the confirmation for the date and time, but yesterday’s meeting with the plastic surgery team confirmed that a stint under general anesthesia and the complete removal of the areas of concern (and a portion of skin around them – present in two very different locations on the body) would be in Chase’s best and immediate interest – “to avoid chances of recurrence”. 

Of course, those last words made us want to ask a million questions because “recurrence”, in particular, sounds like a cancery kind of word. But nothing of that will be known until everything is off his body and studied thoroughly. 

It’s crazy, because most of us will have something looked at or removed on our skin in our lifetimes – and the majority of removals will be benign. But as we processed last night, we realized that it’s not really about the removal – the surgery. And right now, it’s not even really concern over what the biopsy results might yield. It is the heart-breaking weariness of one more thing. …the taste of drugs in his mouth, slipping into unconsciousness, waking in discomfort, itchy skin, open wounds… all of it. …and dear ones, he does it over and over again and has done it for all of the life that he can recall. 

Last night, I asked him if he was okay and he said that he wasn’t…but that he didn’t really want to talk about it until we know the surgery date. 

Tears or not… choosing thankfulness. 

Moment by moment. 

As It Should Be

The dark of the room matched the black of the ultrasound screen as I watched white lines flutter and join, flutter and join, the movement changing every time the tech changed the position of the probe on my boy’s small chest. Slowly, I looked down at his hand, held tightly in mine, processing the questions from the team: “Has he fainted? Have his lips turned blue? Does he complain of pain in his chest?”

Before we started the day, Chase told me he wasn’t worried, but in the moment, he wouldn’t let go of my hand, he refused to eat dinner the night before, and as I woke him from a sound sleep, he wouldn’t stop repeating: “You need to reschedule this appointment”. Fear has so many facets to it, right, dear ones?

The tests were finally completed and the consultation too, and when it was all over, we learned that Chase’s heart was as strong as it could possibly be. In fact, his rhythms neared normal – one of the very few times in Chase’s life that normal has been applied to him. 

In the small generic exam room, I sat in the chair across from the cardiologist and accepted her words. I was relieved, but I felt static too… a sort of nothingness. And as I looked at Chase, seated on the edge of the exam table, he wore a deeply tired expression even though he’d just been informed that the doctors were pleased with his stability. 

Later, in the car with Chase asleep over his arm rest, I replayed that moment in the room – the total lack of joy at seemingly good news.

Are we burned out on grace? Are we so weary that good things have ceased to feel like a gift? Is this what happens after over a decade in the fight?

Perhaps, and yet, dear ones, I don’t think it’s that simple. You see, yes, Chase’s heart tests were stable. In fact, he will receive a much-needed cardiology break as he will go several months before he needs to be rechecked – which is everything we could hope for! But after that piece of news came the reminder words: The good news we received can’t be ensured for any length of time because they just don’t know what comes next for Chase.

So despite the flutter and join on the ultrasound; despite the blood going where blood goes in the timing needed to reach the whole body… well, Chase’s heart is at risk now and always because, as the team reminded us: Chase himself is high risk. 

Stable, but don’t forget: high risk; no future stability guaranteed. 

Sitting with those words and their reality and various possibilities feels like watching a beautiful sunny sky to the east even as you feel a dark storm rolling up behind you from the west. You know what I’m talking about, friends? It’s the kind of storm you feel on the skin of your back even as the sun is warm on your face. …and all you can do is wait for it to hit you.

So where do we go from here?

The reality is that we can’t sit with the high risk words at the front of our brains and hearts every day, or we’d never resurface. We would truly and completely burn out. But the heaviness is a very real component of every appointment and I believe it’s because we’re reminded of everything that we wish never happened…everything we wish never existed in our stories. What do I mean by that? Let me share this beautiful quote from author Emily A Jensen, because it’s perfect and she gets it just right:

“Even being at the doctor is a reminder that something isn’t ‘as it should be’ and that can feel like a heavy blanket on our hearts”. 

So for a moment, we just let the high risk reality sink in. As Jensen puts it so well, we sit with the ‘heavy blanket on our hearts‘. We let ourselves feel the grief of the ‘isn’t as it should be’, because, dear ones, I truly believe mourning is an integral part of the life process.

We were not created for this brokenness.

And some days, the overall brokenness feels bigger than the good test results. So we weep. And that’s okay – in fact, I believe it’s downright good for the soul. But after the tears, we looked up again, and we remind ourselves that every day is a purposeful gift, and also that nobody has guaranteed stability stamped over their future on this earth. Stability was never promised. And that’s okay because better things await us.

Remember that the end of the story will be good, so if there are tears in your eyes…tears in my eyes… if we feel the weight of the brokenness and wish it wasn’t so… well, then we must not be at the final chapter just yet, dear ones. 

Pressing on… 

Moment by moment. 

Roll With It…

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?)

Matching Band-Aids in post-op

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.”

Grandpa watches Chase sleep off the anesthesia

Thank you for rolling with us.

Moment by moment.

The Problem of Young Bones

Every day is a little better. There have been no hallucinations in five days. But sometimes, he still slurs his words and sometimes too, when we speak to him, Chase looks at us like we are speaking a different language – like he doesn’t understand – but only sometimes.

So early, early tomorrow morning, we turn to the next thing: some surgery.

A few years ago, Chase’s bones showed signs of locking into place for good – everything his body has been through led his brain to believe that perhaps he was old enough; tall enough.

So at the time, he went through a surgery to place an implant in his arm – the goal of which was to help control puberty and growth – because, you see, too many children with brain tumors loose their endocrine system regulation in the fight.

Anyway, the implant that has been so helpful to him is now in danger of hurting him. His bones are too young now for his body (you can’t make this stuff up), so the implant that served him so well needs to be removed. … tomorrow morning.

If all goes to plan, this will be Chase’s last day in the hospital for a little while, and how we are ready for a rest!

But also, we would so appreciate prayer for the day because, no matter how small, a surgery is still a surgery… and Chase is still Chase.

Moment by moment.

Let your unfailing love surround us, Lord, for our hope is in you alone

Psalm 33:22 (NLT)

**May is Brain Tumor Awareness Month #GoGrayInMay**

Of Boys, Bugs, And The Week of a Hundred Days

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.]

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