CHASE AWAY CANCER – The life and stories of a cancer ninja

Of Safety Nets and Last Ditch Efforts

“I think this is the last ditch effort…”

The doctor’s eyes were tired but compassionate as the words settled into the clinic space around us. Chase lay on the exam table falling asleep and I looked to him wondering if he’d heard… wondering how much he understood.

“Okay…” I breathed, “Let’s try it.”

The treatment we’ve been using for Chase’s traumatized endocrine system is not seeming to work anymore. So, for the next few weeks, we will push a little harder and then do all the tests another time… one last time to see if Chase’s body can do what it needs to do.

A week before this moment, almost to the exact hour, I heard very similar words from another team: “I think it’s safe to say that what we’ve been trying isn’t working anymore”. Twice in a single week. And it felt like a one-two punch.

To be clear, this isn’t life and death. It isn’t like having a spreading cancer and running out of options. Chase’s migraines are unresponsive to any treatment we’ve tried so far…and his endocrine system is just refusing intervention right now in really unique ways. So it isn’t a spreading cancer, but it’s a little scary to bump up against the edges of the safety net – the known ways to help.

What comes next in this moment by moment? We are in the process of weaning him off certain things and trying other things for the headaches and even as I’m writing this, he’s resting with eyes closed after I massaged his temples and neck with some cooling lotion to give him even a little relief. The good news is that there are more options we can try to help the headache pain. His endocrine system though? That’s another story… I’m honestly not sure what comes next.

In a weird and removed way, it’s fascinating… growth plates that aren’t closing (in clinic… “Mom, can you tell us if he’s had any more broken bones recently?”), testosterone that is being produced, but just floating around because the brain doesn’t really know what to do with it. It’s fascinating, but it’s heart breaking too. The connections of the body and brain that were supposed to work together were irreparably severed by his brain tumor and treatment.

Yesterday, just two days after Chase was in the hospital for meetings, I found myself sitting in another hospital with a friend. The quiet clicking of the IV pumping fluids into her child’s arm creating a gentle backdrop to the moment.

This mom and I often talk about the chronic space of too much pain and too few answers and under the fluorescent lights and sounds of the pediatric infusion ward, with all of the question marks surrounding Chase still heavy on my heart, we agreed on these things …

We are okay. But also, this is not okay.

God is good. But also, this hurts.

This will be a meaningful part of our children’s stories. But we are so tired.

Do you feel the conundrum?

Maybe it’s a part of your own story too?

I think it’s okay to inhabit both of these heart spaces equally, dear ones. That’s actually (one of the many reasons) why I love the biblical example of David so much. He grew weary, and so many times, from his perspective the story remained unresolved. And yet he never stopped being sure of who God was. He knew his suffering was not wasted, he knew that bad things don’t equal a bad God, and he knew that good would ultimately triumph. But also, he wasn’t afraid to be on the floor and weep because life was exceedingly overwhelming and things were hard.

So here are my takeaways from this week with its’ medical one-two punch and it’s “not working anymore” vibes…

Hurt and hope can walk hand in hand.

Weariness need not erase faith.

And “last ditch efforts” only look that way now.

New chapters are still being written…

Moment by moment

[picture: pieces of sunlight while waiting on the oncology floor]

Of Siblings

Tonight is the last night of September.

It is the last night of this month where we “Go Gold” to show how deeply and passionately, forever and always, we stand against childhood cancer. And in these last moments of the month, I want to highlight one last moment of going gold for those who are all too often overlooked.

This is not an afterthought, but a deliberate pause….an anchor at the end of September just as they themselves are all too often called to anchor the unexpected.

This is for the siblings of a child with cancer.

This is for the brothers and sisters who watched their family irrevocably change when their sibling got sick.

This is for the kids who had to try and wrap their minds around why Mom was at the hospital yet again …why Dad was working more. …why they both were often so stressed.

This is for all the times that their plans got canceled and for all the times their birthdays looked different.

This is for all the times they silently watched their sibling get all the attention because their sibling needed it to survive.

And here’s the part nobody talks about nearly enough…

At even the youngest of ages, they understood. And it hurt them too.

They have had to learn the strange balance of loving their sibling and still missing the life they had before cancer.

They have had had to learn how to handle being scared every single time that hospital bag gets packed.

They have had to learn how to handle a trembling smile at every separation all while praying it will be the last for a while.

They say “I’m okay” because they want to mean it and they can see the worry on their parent’s faces.

But they’re kids and it shouldn’t have to be this way.

We watched our own children live this alongside Chase.

We watched them worry about their brother and grow up with and around the reality of cancer.

We watched them adjust to a life that changed because of a diagnosis they never received.

And as their parent, the reality of watching this is hard to explain. Bearing witness to their forced maturity is heartbreaking.

Because when Chase was diagnosed with cancer, we did everything we could to keep him alive. Quite frankly, we didn’t have a choice.

But here’s the thing… the parental heart is always watching the other children and worrying for them. The parental heart is always wondering how much these precious siblings are silently carrying. And we are ever wanting (with every fiber of our beings) to change the narrative and knowing we can’t.

So today, in these last “Go Gold” moments, I want the siblings to know something. I want to write it out bold:

WE SEE YOU

Your feelings matter

Your childhood matters

Your fears matter

Your needs matter

You are not forgotten just because someone else is sick – even when it sometimes feels that way. And hey, you don’t have to be the “strong sibling” every second of every day. It’s okay. This is a lot.

Just know that when we “Go Gold” for the children fighting cancer, we are also going gold for you – for the brothers and sisters standing beside the bald heads.

Because the truth is that cancer strikes one child, but it changes all of them…profoundly … forever.

– MbM –

This is dedicated to Darcy, Aidan, and Karsten – you are brave with your beautiful souls, darlings, and I’m so thankful for you

[adapted with permission from the heart and writing of another sister cancer mama]

[note: almost all the photos appearing in this blog are courtesy of the amazing Margaret Henry]

Of Fourteen Years and A Better Country

A handful of weeks ago, as the last July sun rose on the horizon, Chase passed his fourteenth cancer anniversary marker. It’s been fourteen years since Darcy woke us up right before the dawn complaining that Chase was moving in his bed and wouldn’t stop. Fourteen years since the first seizure, the first ambulance, the first terrifying description: “there’s a large mass”, and everything we ever knew changed forever.

We were initially given a less than twenty percent chance of Chase surviving his cancer. Did you know? I remember that his doctors hoped to give us six months because the goal was to get him to his third birthday. They wanted to at least let him turn three… and that was fourteen years ago now.

In those early days, we slowly said goodbye to the life we had and the Chase we had known (though we didn’t realize it at the time)… the one with the hair on his head, with his unscarred body and un-slurred speech. The one with the perfect hearing and eyesight, and plans to grow as tall as his dad. The Chase we thought we’d know and grow looks different now. Everything changed with the cancer.

But that’s not the end of the story…

Recently, we were in the car with our fuzzy-headed boy and as often happens with any time on a car ride, Chase talked about whatever happens to come into his mind.

On this particular occasion, he talked about his friends Wesley and Connor and many others that he has known through the lens of the hospital. And then suddenly, he was talking about his own journey.

During the somewhat rambling course that his words took, he said that cancer has “changed him for the good”.

At this point, I looked over at Bob… What did he say?

It is not an unusual thing for Chase to stumble over or confuse his words, but this felt too big and strange a slip, so I actually stopped him and asked him to clarify. In that moment, I actually told him what I thought he meant to say. “You mean it’s changed you for the bad? The cancer? I think you confused the words, Chase.”

Then he told me that no, he meant what he had said. And then he clarified his statement with these words …

“I think the tumor changed my life for the good. It changed a lot of things like how I prove myself, how I give advice, how I talk to people in the world. I can give people courage and confidence. I wish it didn’t happen. But I won’t say that. Because it makes me feel bad about life. I don’t want to feel bad about it. I pray that my faith stays strong.”

How can my son sit there, broken and weary after being profoundly, forever altered by his disease and say “good”? How is he capable of making the decision not to dwell on this very real damage? …the same damage that overwhelms my own heart in many moments. Just… how?

We, the ones who witness his fight, know it is not good. In fact, cancer feels like the very and fiery opposite of good. And yet Chase said what he said.

I think I could sit with his words forever and not get over them, dear ones. That’s why I opened the note app on my phone even as he was still talking and started typing as quickly as I could! The words seem crazy…! And yet they ring clear and concise – especially when I consider that the last words he decided to speak on the subject were:“I pray my faith stays strong.” [he was actually quoting a piece of a Danny Gokey song he loves]

I believe Chase could ultimately say the word “good” in this context with complete neurological clarity because he wasn’t focused on his pain. His eyes weren’t down, looking at the reality of where his feet were planted on this earth and mess. Rather, he was looking ahead. He was focused on that place that the book of Hebrews calls “a better country” – the final, best, and promised place where we will finally understand how our pain wasn’t wasted. The place where we will come to see the good and know as we are fully known.

To be clear, Chase knows the reality of cancer. And as he said – if he thinks about it he starts to feel bad. I have witnessed his tears and his questioning more times than I can count.

I believe Chase was, with his words, practicing what it looks like to live with hope. His good…his very joy…wasn’t spoken in regards to his outcome but rather, in his own worshipful witness of Spirit-enabled profitability in the chronic wreck of a post-cancer life.

This is the goodness of God in Chase. Fourteen years down the road…

Moment by moment.

“Why did [the people] stay in tents in a place where they owned nothing? Because they desired a better country. They realized that that was not the whole plan. The whole plan was wider and deeper and broader than just the land. So they put up with temporal discomfort, believing that this temporal discomfort is leading to an enteral weight of glory. … We press on with faith and we endure with hope. The hope is taking the future reality of God, the future promises of God and believing them to be so true that you live your life today by them.” Dr. Steve Leston, on Hebrews 11

Of Breathing and Daily Bread

The older sister’s voice is calm, but tense: “I just checked on him. He is breathing, but his skin is still really pale. I took a picture for you.”

I absorb her words as I sit in the stands at a freshmen football game, cheering on the baby of the family while the oldest, best sister watches over Chase in the fifteenth hour of his sleep. He sleeps a lot right now.

This last week, Chase caught a cold.

As it usually goes in large families, everyone caught a cold. But whereas we all took extra vitamins and maybe an extra nap, this very small, very basic virus dealt a throat punch to Chase’s autonomic nervous system. It took him from in school and joking with his teachers to walking only with assistance, not eating, and not even wanting to talk in a matter of 24 hours.

For much of the last five days, Chase has been on a heightened “ER watch”, meaning that Bob and I as parents were instructed that a noted status change would require not a call, but a going. It feels like the real life equivalent of the monopoly jail card…”Go directly…don’t pass…don’t collect…just GO”.

As of this morning, I’m so thankful to report that Chase managed to stay out of the hospital and it’s seeming that he’s turning a corner. His blood pressure is now registering almost human numbers and while he’s still quite weak, he’s getting stronger and starting to joke and smile again.

But I think I’m writing this out for myself as much as for you today, dear ones. The last five days have been intense and there’s no good space in general parenting for the necessary processing of acts like checking to see if your child is still breathing…or talking through that fear with the siblings.

This is one of those pieces of Chase’s story that seems to have a very direct correlation to his brain tumor. Which means he would not struggle like this if he hadn’t had cancer.

Some days – especially the tired days – that thought hits hard and insidious. It sneaks like a whisper in the back of my brain as I stare at the blood pressure machine for the hundredth time or try and help him get comfortable around chest pain and dizziness.

This is one of the pieces that doesn’t wrap nice and neat – that doesn’t have an end in sight. And it’s frustrating.

During this time, I have found myself thinking a lot about the asking for our daily bread (from the Lord’s Prayer). “Give us this day…” …not this week, this month, the lifetime…just this day, and maybe even this moment. There is an immediacy both to the request and expected answer too.

Give me this moment what I need, dear God …and when the next moment comes, faithfully give again.

I think this is the picture of sufficient grace: the circumstance might not change, but we are held and given what we need even within the heartbreak or weariness.

And so we continue…

Moment by moment.

[picture: from Darcy…originally in color to allow me to check Chase’s skin tone from a distance]

Of Papers, Chest Pain and Being Okay: a moment for the new school year

I have come to realize that I don’t post very often in the month of August and it’s because it’s the month that comes with a return to school and all the pieces involved for a child like Chase.

Last year, Chase missed a significant part of his sophomore year. This year, he’s hoping for better and more, but he’s afraid too.

Every day it is a challenge to help him wrap his mind around his symptoms and try to figure out what needs to be reported and monitored, and what can be ignored. [easier said than done, for sure]

And me? I’m filling out all the papers and sending emails and working with his hospital and this most incredible support network just to get Chase in the school building and allow him to be there all day.

This last week, I was at the school almost every day (forms, medicines, low blood pressure intervention, etc)… BUT …so was Chase. [winning!]

The intersection of a medically complicated life and a typical school day is an interesting space to inhabit.