Yes! It’s the first day of May, the kick-off to Brain Tumor Awareness Month, and that warrants a rather questionable video of me telling you whatever is on my mind.
First of all, THANK YOU so much for all the texts and messages in response to my little update yesterday. I so appreciate all your encouragement and prayers – feeling so loved. Please continue to pray that the Lord would guide and direct me in every step. I know the desire in my heart, but I also long for my heart to mirror God’s will, even if that means changing things up.
Next… Brain Tumor Awareness! Dear ones! Chase Away Cancer (the book link to Amazon) turns TWO today! And in honor of that, I explain why you need to go buy one, share it with a friend, give it as a gift, and basically all other manner of shameless promotion. Guys, I believe in the message of this book with every fiber of my being. Pass it on.
And last, you’ll have to watch the video because … wait for it … Chase is a book-stealing book stealer. Ah…
Moment by moment…
Ellie
PS: Y’all can @ me anytime on Facebook (Ellie Poole Ewoldt, Instagram (Ellie Poole Ewoldt), or Twitter (eleanorewoldt) – I love to hear from you!
PPS: If you think of us tomorrow (Wednesday 5/2), please remember to pray for Chase while he meets with his endocrine team at Lurie. Our hope is that the growth hormone shots are working and that Chase’s system is as strong as it can be.
Dear ones, by all rights and data, we should have never seen a 3rd year, let alone an 8th birthday! Yet, here we are and Chase still lives and breathes joy into our family and the world around him!
He is a miracle and we are so thankful.
To help us celebrate Chase’s 8th birthday this year, we are doing something different and new. We kindly ask that you consider making a donation directly to our Lurie Family – Ann & Robert H. Lurie Children’s Hospital of Chicago – through this online donation page. Give $8 (or more!) in honor of Chase’s 8 years.
Every dollar counts.
With your help, we can contribute to brighter futures and better outcomes for children like Chase.
We have asked that all monies given in honor of Chase be sent directly to his wonderful doctors in the Pediatric Brain Tumor Program – these doctors that you all have come to know so well over the last several years. Imagine what they can do with your gift! All donations are tax-deductible and will be acknowledged by Lurie Children’s Foundation.
On behalf of the patients and families of Lurie Children’s, thank you for your support.
The outcome could have been so much worse and for that, we praise. However, it was a shadow day, a “cancer” day, a reminder that we live in and with something that can threaten whenever it wants. It was a day for remembered dependence on God in ways that summer pool days don’t always impress upon me.
At the end of it all, we were all six under the same roof with no hospitals or sirens and we slept – truly slept – and for that I’m thankful.
At this moment in time, here’s all I know for sure: there’s a mercy that’s new every morning and a proven refuge in times of trouble.
Yesterday was a day when it was easier for me to throw up words onto social media sites, but I’ve copied them here today. May they encourage you to wait on Him, trust in Him, and see your wait as a beautiful part of the journey.
Moment by moment.
Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.” Psalm 91:1-2 (NLT)
10:15 AM —
In the first hour of this morning’s summer camp, I got a call from a friend at church indicating that Chase had been brought in complaining of a headache, right eye pain, and lack of feeling in his right leg – even some “dragging” of the leg.
[cue the parent panic…especially as his tumor presented on his left side]
By the time I got to him, he could walk, he’d never stopped talking, and he showed no signs of seizing, but he was so tired that he spoke hardly at all (for those who know Chase, you know this is out of the ordinary) and slept for a few hours following my bringing him home.
He’s now more “himself”, but keeps resting and sleeping – saying his head hurts and his leg feels “rusty” even though it works.
In times like this, it feels impossible not to panic, but we are trying to live in grace in the moment.
Right now, for me (Chase’s mom), that looks like this: setting a timer for 30 minutes and only checking my email when the alarm sounds – to avoid frantically opening the mail app on my phone every 20 seconds in hopes of hearing from Chase’s doctors.
It could be a virus, it could be his growth hormones, it could be nothing, it could be something… I don’t know and part of me doesn’t want to share this, but I’m writing it out because I believe I’m not the only one who is having to actively pursue calm and joy in the middle of a day I didn’t expect.
Peace is not coming naturally like breathing, so, I am CHOOSING it.
Choosing peace.
Choosing hope.
Moment by moment.
7:30 PM —
You all are so awesome for walking this journey with us.
I just heard from Chase’s doctors… apparently it could be one of a few things (no easy road for our boy), but it was most likely either a seizure of some kind, or even more likely, some sort of migraine episode…because, apparently, kids like Chase start getting more/frequent/painful migraines.
Oh, the side effects of breathing…
Only time will tell what really happened today.
If this is once-and-done, it was probably a migraine, but we need to watch ever so closely and at the first sign of a repeat performance – call. Don’t pass GO, don’t collect $200… CALL.
So, the weird day is done… And the weird life continues.
I want to be free of the wait for “the next thing”, and yet I choose to believe the wait is as purposeful as every other moment.
Tomorrow is a new day with new mercies.
Taking it moment by moment.
Thank you for walking this with us!
Chase still has a headache, but perked up in order to help with his evening shot.
This picture pretty much sums it all up: yogurt, butter, milk… And a light-sensitive, temperature-dependent medication to be injected with needles – on which we have yet to be trained.
This is something I’ve been wondering about: how do parents put needles into their children’s tender skin? Will it be easier or worse than the precision of a central line? I don’t know if I have the strength for this, and I’ve done an awful lot.
The story contained in the picture of the fridge is so normal. …and yet it’s so NOT normal.
In the Fall of 2012, Chase wandered the halls of the oncology ward while I diligently followed, pushing his IV pole with loving care (and not a little trepidation). As we paced, we crossed paths with a father pushing his young son in a stroller (IV also in place) and as families often do, we stopped to talk.
The boy in the stroller was a little younger than Chase, but they stared at each other earnestly. And I do believe it was the first time Chase really saw another little boy who looked like him with the hairless head and the white skin and the tubes protruding from his body. A curious knitting together.
The dad and I exchanged stories cautiously for no one ever wants to pry into the pain, yet there’s almost always the desire to know you’re not alone in this decimation of the life you’d envisioned.
As we spoke, I came to know that their diagnosis was fresher…and I felt like an old pro. We’d been devastated since July. They’d only just started.
And the crazy thing was… statistically speaking in that Fall of 2012, Chase was supposed to die – his cancer defied his chemo, his body routinely on the verge of giving in. Chase was supposed to die…and Lucas, well, Lucas was supposed to live.
That day, I watched the shock and pain spring into the father’s face as the dawning realizing hit that we both had death sentences, but one of us seemed more likely to suffer that fate. And that look on his face in the Fall of 2012, the shock and horror and beyond was not unlike the look in his eyes when Bob and I hugged him close while we stood beside Lucas’ tiny coffin – not four years later. We’d barely celebrated remission. Nobody saw the huge lung growths coming.
There is simply no accounting. There are no good words for what it was like to see such a small coffin and the hands that pushed toys around the playroom next to my son – stilled forever in eternal sleep.
And his parents and brother still breath.
There are no words.
But I write this out today to honor Lucas and for the sake of his parents and brother too. Sometimes, there is absolutely nothing good to be said to those asked to walk this horror, but we can remember. We can sit with them in their pain – inasmuch as we can ever understand that which we’ll never understand.
So, take the story of Lucas (how I wish you could have met him and known a little of his amazing life), hug your loved ones close, and reach out to those around you who are grieving…who must still draw breath when a part of their heart stops.
“Why should I be out of mind because I am out of sight? I am but waiting for you, for an interval, somewhere very near, just round the corner. All is well. Nothing is hurt; nothing is lost. One brief moment and all will be as it was before. How we shall laugh at the trouble of parting when we meet again.” Henry Scott-Holland
Looking forward to The Day...
Moment by moment.
Chase and Lucas in the oncology ward playroom, Spring 2013
