When Everything Changes

“Relying on God has to begin all over again every day as if nothing had yet been done.”

C. S. Lewis (Collected Letters)

It’s funny how a single day can change everything. 

I was sitting in the top of a football stadium along the river separating Ohio from Kentucky, the sun warming the still air all around us when I saw a new message on my phone. 

And everything changed.

For eight months now, the anchor in in the harbor has been a “wait” word. Wait and see if the cancer grows back. Wait and see if it grows into other new, breathing lung places. Wait to even look with an ultrasound because these kind of cancers grow so slow. And these doctors who see the worst and the harshest…? Well, can you blame them if they don’t want to over-cut thin skin, over-treat weary souls, over-anything these precious littles? I certainly can’t. 

But the scared places in my heart wanted to blame and scream to stop the wait and start the fight. The cancer is slow in other bodies, but cancers seem to like Chase’s body too much, and the last one grew fast like a wild fire in the wind. 

Four to six whole months to even peek inside… the pictures and news would come right before Christmas and his tenth birthday. Four to six unchecked months for the cancer to go and do anything, anywhere. And of course, it might not go anywhere. But this is Chase we’re talking about and he tends to have the outlier story; the road less traveled journey.

But then, a message read against the sun’s glare on my phone at the top of a football stadium changed everything just a bit. 

For, you see, sometimes doctors change their minds. They talk to each other and pour over the charts and histories and results like a holy grail of sorts, and then they turn to each other and question why they should stick to the idea of four to six months when Chase is a blink-of-the-eye kind of boy. And so, instead of waiting for cold weather and holidays, the message said we do it now, in just a few days at the peak of the pre-Fall warmth.

And yesterday, with a simple phone call, everything changed again

Because it’s not just the scan that comes in a few days, dear ones. Sometimes doctors change their minds about treatment too. They chart and think and test and then they turn to each other and question the wisdom of leaving cancer to grow in Chase’s body where it grows too well despite official prognoses and data. And so, while treatment may not be easy for Chase, it is a precaution that has gone from a distant possibility to an imminent reality.

For the first time since October of 2013, our sweet boy will officially go back into treatment. 

It’s silly and crazy, because we’ve known to expect this since we heard the words “It’s cancer” back in January. But it feels different now that it’s here, and it feels urgent in the speed of a changed decision. And I think at the end of the day, the best way to describe our hearts in this is ‘joyful grief’. We are so deeply thankful that the wait is over for now, and that the doctors looked to each other and came up with the answers that were heavy on our hearts. We did not have to fight them for these changes. They came to our conclusions on their own and that’s a blessing of the best kind when doctors have to be like family members on the regular. So there is joy in that oneness of mind, but there is grief too. Once again, we push into pain for the long term benefit and willingly subject our precious son to incredibly hard things for the sake of his future quality of life. 

We have been told that we will hopefully know more by the end of next week. And it could all change again in a second. But until that time when the results are known, through that time of tests and procedures, and beyond – whatever may come – as long as breath remains – we cry out for grace and strength in the …

…moment by moment.

[All pictures are from this past weekend; fulfilling Chase’s dream to finally see his friend Robbie Gould play in real time. All our love and thanks to the Gould family for making this dream a reality for Chase.]

Of Food, Fire, And Being Fine

“What if Chase ever did something truly harmful?” 

 Sometimes the question keeps my mother heart and brain up at night. Raising a child with brain damage and low executive function (the part of his brain that reminds him if things are a good idea or not) can be exhausting, but it’s the element of danger, the knife’s edge – both a literal and metaphorical idea most of the time – that keeps my eyes open in the dark and makes my heart pound faster. 

What would I do if he ever did?

He wouldn’t, would he?

I didn’t know how soon I would be asked to put those ambiguous thoughts to the test of reality…

“FIRE…!!! FIRE-FIRE-FIRE-FIRE…!!”

It was early on a spring-cold Sunday morning and I thought I had heard all of Chase’s screams, but this one was new and horrible – the panic at a level I’ve never experienced before. I could feel his fear in my own blood. Hitting the lower level stairs at a dead run, I turned the split corner by the front door landing and looked up into my kitchen, the glow of flames currently contained in the microwave clearly reflecting off the dingy white ceiling. 

Why hadn’t we ever re-painted the ceiling? It’s so strange what random thoughts race through your mind in a moment of threat and adrenaline.

The kitchen was on fire. How long did I have before it spread and cut off the boys escape from down the hall? Did Aidan have his headphone on – could he hear Chase scream? Thank God Bob and Darcy were already gone.

My view of the unfolding glow was only a split second as Chase and both of his brothers came pounding down the stairs, free of the hallway in their pajamas and bare feet, obeying the command to take nothing but their bodies and exit the house immediately. 

Heart racing so hard I could hear the thump of it against my ear drums, I pressed those three precious digits into the screen of my phone and thumb hovering over the final push to put the call through, I stood in front of my house, the door thrown wide open and wondered if today was the day Chase finally burned the house down. Perhaps it was always only a matter of time…

Thumb paralyzed on the phone, I realized that there were no longer glowing ripples of flame reflections visible through the door. I expected to watch them climbing a wall by now, not go dark.

Did I dare look before I placed the call? To go back into a structure potentially on fire was the height of stupidity...

Did I misunderstand when Chase cried for us to run? But I had seen it happening with my own eyes…hadn’t I?

I left the boys crying in fear on the front walk and gingerly entered the house again. 

There had been a small fire. 

And it was totally gone. 

Slowly, the reality began to unfold with the story. Chase struggles to read, so many times, he simply does not read – relying instead on pure instinct and determination. So he didn’t see the small, brightly-colored print at the bottom of a fast food bag warning about the microwave and his first clue to the awful mistake was watching the bag with his leftover chicken sandwich burst into flames in front of his eyes. 

There is probably a logical, scientific explanation for why the bag stopped burning, for why the dish burned, but did not catch fire, for why the inside of the microwave smelled heavy and densely of acrid smoke, yet there was not so much as a vapor or scorched wall present when I finally got the courage to pop open the door. The walls of the machine were cool to the touch.

There is probably a logical, scientific explanation, but to me, this will always be both a miracle and a message. 

Everything could have burned, but it didn’t. While Chase made crazy decisions and took uninhibited risks, the worst was withheld and we were kept wildly, joyfully safe.

And as I stared at the cinders of the paper on my scorched dining plate, standing in the middle of the kitchen I still had, listening to my children stepping back into the house in relief and joy, it felt as if God himself whispered quiet and close: 

“See? I’m not taking it all away, but I’ll see you through it just fine.”

Moment by moment. 

“When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
    and the flame shall not consume you.
For I am the Lord your God,
    the Holy One of Israel, your Savior.”

Isaiah 43:2-3, ESV

Chase Away Cancer

“As I turned from that moment of deep thought and encouragement over the pictures, I saw Chase – wobbly, unsteady Chase – who’d grown tired of all the artwork and decided to attempt fetes of daring instead.  The boy had come into the living room, stripped his shirt after painting, and had stacked a small, plastic chair on top of the soft couch cushion, and then stacked himself on top of the chair.  And there he sat as I turned, rocking with the unsteady chair perched too far above the hard wood floors, drinking his juice and laughing at something on the TV. 

“Chase!” 

“What?!  I’m being careful!”

“Chay, what would Dr. Lulla say if he could see you?” 

The impish look he threw me was as if to say it would be strange for him to be anywhere other than teetering on the brink of another disaster.  “He’d freak out.”  For, this is Chase.  He will always push the boundaries of safety and sanity just a little bit.  I think he would find life terribly boring if he didn’t…”

Chase Away Cancer: A Powerful True Story Of Finding Light In A Dark Diagnosis
Chase Away Cancer book

Have you ever heard the story of Chase from the beginning?

This month of Childhood Cancer Awareness is a perfect time to start the story from the beginning with the Chase Away Cancer book. It’s also a great gift for anybody who needs some encouragement on a hard day.

In the the telling and re-telling of our stories that we strengthen our awareness and remember to be thankful. Blessings come in the most unique ways.

…moment by moment.

Purchase your copy of Chase’s Story from my two favorites – Tyndale House Publishers or Amazon today!

[photo: courtesy of a special Chase Away Cancer endorser, the St. Baldrick’s Foundation]

A Letter In The Trenches

My dearest Fellow Parent and Partner in the Awful Fight,

First of all, you are so brave. Even when you feel like a huddled, sobbing child yourself – never forget, you are fulfilling your role as the lover and caretaker of your child and you are just so, so brave.

People never tell you that sitting hunched and weary next to a hospital bed is going to start to feel not only normal, but appropriate and right. People also never tell you that leaving the room (let alone the floor or the building) might fill you with all sorts of feelings, not the least of which is dread. Nobody tells you that it might feel strange to breathe and function in the normal world when your baby is attached to IVs and monitors for the sake of their life. It will feel wrong to do all these things…

But do them anyway.

Give yourself a place to breathe as if your own life depends on it – even if it’s forcing yourself out onto the city street with shaking knees and eyes filled with tears for just a minute or two.

I know it feels like life is ending, and in a way it is – the way you’ve known it is. But also, it really, really isn’t ending, so try not to let it close in on you. Your perspective has been drastically, irrevocably altered, but it is not gone altogether. Fight against your irrational fears (because there are plenty of rational ones in our scenarios), and keep leaning in to find your “normal” – a sliding-scale word that will likely henceforth only be referred to with quotation marks in your life. Some days, going to the cafeteria for a coffee is going to feel like the pre-cancer equivalent of cleaning your whole house and running all the errands. Victory is sweet.

Also, If you find yourself able to go see one doctor for yourself – make it a dentist. Do I sound crazy? I probably am. It’s hard to think about teeth at all when your baby’s hair is falling out or their nourishment comes through a tube in their veins. Sometimes you spend the day in the hospital and are home for only a few hours before going back and sitting in the ER until 2AM. On these days, self care of any kind feels counterintuitive, but trust me, you don’t want to deal with all the cavities when you resurface from treatment in two or three years, so if you master the whole “leaving the hospital thing”, go see your dentist. …because small life victories like this kind of self care are sweetness that don’t give you cavities.

Then (or possibly do this very first thing)…find your “circle”. When it goes public that your child has cancer, a lot of people will want a piece of you and your story. People you haven’t heard from in decades will come out of the woodwork just to let you know they love you and are praying for you and want to do something for your family. It’s amazing and a little embarrassing that something so awful brings so much “special”. However, not all these people are in your fight for the long haul or will speak into your life (as opposed to taking a piece of it), so find your long haulers. One, two, six…the few, the trusted, the prayer warriors, the 24/7 texting-phone-always-on-friends who say they love you no matter what, will help you no matter the time or demand, and only give advice when you ask. These are your people for the marathon. They will be your “stretcher bearers”. Because you will need the holding up – desperately.

Speaking of needs; it’s okay to be a hot mess. I need to say that once more…

It’s okay to be a hot mess.

We live in the digital age of perfectly projected parenting with all things filtered and pinned and the truth is that it’s all too easy to forget that life is messy. No one parent can do all that is thrown at them in a day, let alone all that is expected (and this is even before a diagnosis). We are broken human beings trying to care for other broken human beings and our bodies are fearfully and wonderfully designed, but year after year of extreme stress, emotional turmoil, sleep deprivation and facing terminal situations all take their tole. I guess what I’m getting at is this: there are many ways to go through this journey, so don’t look to the parent next to you – look to yourself, and don’t be afraid to get help if you need it. Anxiety, depression, and stress are real and devastating on an emotional and physical level. We were never created for this and anyone who Facebook memes you to just be strong…well, it’s nice, but the truth is we’re weak…and that’s not all bad. If you learn anything from cancer, let it be this:

Life is too short and too precious to be anything other than raw and authentic.

So, don’t pretend to be okay if you’re not okay. You’ll be amazed how often your struggles will encourage somebody else – because we’re all broken.

There are so many other little things I’d love to tell you…from the secret to finding washing machines in the hospital and the best food within walking distance, to making time for spiritual and physical renewal (and don’t forget to ask for extra blankets), but for now, just keep breathing and don’t ever forget that you are so brave. Furthermore, you are not responsible for the weight of the world, the outcomes, or even one whole day. Just take it moment by moment.

Signed with love from the trenches,

Ellie

Chase Strong

Thanks to a lovely woman named Cathy, who started following Chase’s journey on Facebook, there is now a beautiful line of Etsy items to honor Chase’s fight and stand with all those who support Childhood Cancer Awareness.

Are you “Chase Strong”?

Chase Strong Washer Bracelet (my personal favorite) – click to purchase

Beautiful silver Chase Away Cancer Cuff Bracelet – click to purchase

Hand-Stamped Chase Away Cancer Pendant Necklace (Darcy’s absolute favorite) – click to purchase

Chase Away Cancer Keychain – click to purchase

Our gratitude to Cathy for her wonderful ideas, her tireless work (each piece is done by hand!), and her encouragement to our family.

Profits from the sale of these items are being donated to the family