Category: Uncategorized

Keeping It Interesting

This one… he likes to keep it interesting, doesn’t he? We spent yesterday morning talking with his endocrine team after some really wild labs.

 
Chase’s numbers are suddenly kind of crazy and it could be for a lot of different reasons, but the most important and immediate concern is getting his levels back under control – and quickly. 


You see, the longer his levels are all over the place, the more likely his thyroid-free body is to create a favorable environment for thyroid cancer re-growth – in his lymph nodes, especially. [spoiler alert: we *super* don’t want that]


So for now, the plan is to make immediate changes to the medications that are helping his body regulate things, and then we re-test everything in a few weeks.

 
As a parent who walked into this childhood cancer world under the auspices of a brain tumor diagnosis, waiting to re-test is a terrifying prospect because brain tumors often grow incredibly quickly and hours to days can make a huge difference in the end result. But… as Chase’s [very patient] endocrine team has had to remind me many times over the last four years: thyroid cancer is a different cancer with its own unique schedule of growth – in that way, at least, it is a far more gentle cancer. 


So we sit for these weeks until the re-test and trust Chase’s weary body and his levels to the One who knows him best.

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. 

Of Orange Shirts, Golf, And Kids’ Stories…

Twelve kids with their stories (both patients and some siblings too – because wow, the stories these siblings could tell)…

One day…

Two golf courses…

And hundreds of generous hearts…

All the numbers… all leading to the kind that take your breath away: like, just over $1.5 MILLION raised for Ann & Robert H. Lurie Children’s Hospital of Chicago.

It was such a heart-filling moment to be part of this event and it was also such a well-placed reminder in our weariness that there is always hope for better days ahead.

–MbM–

twelve children in orange shirts with the golf course in the background

All our love and gratitude to Kevin Butler, the Ace Hardware Foundation, Children’s Miracle Network Hospitals, and all the many amazing souls who made this happen.

Of Special Things…

Dear Ones,

After completing more tests and meeting with a cardiology team, we learned today that Chase’s heart function is decreasing. 

At this time, it’s unclear how quickly this decrease is occurring, but today confirmed that the ejection fraction of the left ventricle is noticeably lower than his last (and normal) echocardiogram done a little over a year ago.

After a lot of serious and big words, we asked outright if Chase was in heart failure, and found the answer encouraging to our own hurting hearts:The actual failing comes when the heart can no longer support the proper function of the body, and right now, despite its decreased function, Chase’s heart is still supporting his body. Holding on to this very, very closely tonight.

Right now, Chase is wearing a heart monitor and more tests and labs were done today. Over the next weeks, there will be still more tests and meetings, and we will do all of this again in two months to try and get a better picture of how all of this is unfolding. 

As we struggle to process something that is both awful and not surprising, we are so thankful that heart failure is in no way imminent at this moment…and yet we are deeply grieved that his heart is struggling at all. 

On the way home, I was trying to explain the outcome of today’s meetings to Chase in a way he could understand – how this is serious, but for now, he’s also doing so well, and he asked me “Why didn’t you just let me die of the cancer, Mom? Why did you let me have all the treatments if they were just going to hurt my heart?” … and while I took a moment to catch my breath and pick up the pieces (he packs a punch with his questions some days, our Chase boy…), he interrupted the silence before I could speak with this: “Was it because God had a good plan for me? …because I had to do special things?” …and then, more strong, more convinced: “I have special things to do in this life.”

I couldn’t have said it better myself, sweet boy. 

Moment by moment. 

 For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

Jeremiah 29:11 NLT

Of Hearts And Things We Can’t Yet Fathom…

Hello, and Happy 2023 to you! The last weeks have been full of family, extra snuggles, and rest …

As some of you may already know from previous posts or social media, Chase had a liver and heart MRI last Wednesday, January 18th in order to monitor an iron load in his body. It was quite a process that required hours, anesthesia, and a dedicated cardiology/anesthesia team monitoring his unconscious, intubated body.

You see, once upon a time, the children with Chase’s cancer never lived. And even now, too many still die. But there are now enough that live, and live long enough, that – for the first time – medical teams are able to track some of the long term effects of saving their lives – one of which is an iron overload from blood transfusions.

This is what sent Chase into the MRI: during the worst days of his initial brain tumor treatments, he was so sick, so weak, that many times, the only thing that kept him going were bags of full red blood. I wish you could all have seen how he would go from sunken gray to pink, how he would feel energy again, sometimes for the first time in days! And yet, all that lovely, life-giving blood came with a price: iron. Too much iron for his body to metabolize long term. And so they have watched organs like his liver for a couple years now, watching the damage unfold. But in the last few months, it became increasingly clear to Neuro-oncology and cardiology that it was time to ensure the safety of his heart.

The MRI results came in on Thursday evening as we were stuck in traffic, in the rain, on the way back from day two of hospital appointments.

First and foremost, Chase’s body is holding out well and steady against the iron load, which is amazing. 

Second and more sobering, however, the MRI on Wednesday caught something about the left ventricle in Chase’s heart. I won’t say technical terms just yet because they’re big words and scary and they could mean many different things. 

Suffice to say that Chase will be adding a cardiology team to his ever amazing, every growing roster. 

It’s hard to say at this point whether this is a gentle precaution or a serious issue. But, one week to the day after he was in the MRI machine, he will be undergoing more heart tests and meeting his new cardiologist.

All of this feels a little difficult, very broken, and just plain crazy to think about. He started with brain cancer and now we’re looking at his heart? And yet… this is the reality, this is the chapter, this is where we are today. So, a reminder from our hurting hearts to yours:

God is putting together a story we can’t even fathom and it will be good. 

Moment by moment. 

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