Monthly Archives: July 2014

The Second Year

Tuesday, July 31, 2012…

Two Years… Two whole years since the early morning panic gave way to a living nightmare on the day Chase was diagnosed.

What struck me most as I looked through the pictures and memories is that life can feel complicated now, and yet, as I look back over the last year and see such crazy hard times, I realize that I’m apt to forget what it looked like in the shadow of whatever the here and now happens to hold.  I can tend to see Chase’s deficits and struggles and not realize how healthy and robust he is now compared to the emaciated waif that was.   The truth is that much has changed.  The truth is also that there are many uncertainties ahead.  The truth is that God’s goodness and faithfulness to us have never and will never change.  And Chase is still living and breathing with us two whole years later.

We’ve spent many days listening to Rend Collective’s newest album.  Our family’s favorite song is “My Lighthouse” and I truly can’t think of better words to sum the year…the two years…or, the lifetime:

In my wrestling and in my doubts
In my failures You won’t walk out
Your great love will lead me through
You are the peace in my troubled sea

In the silence, You won’t let go
In my questions, Your truth will hold
Your great love will lead me through
You are the peace in my troubled sea

My Lighthouse, my lighthouse
Shining in the darkness, I will follow You
My Lighthouse, my Lighthouse
I will trust the promise, 
You will carry me safe to shore 
Safe to shore

I won’t fear what tomorrow brings
With each morning I’ll rise and sing
My God’s love will lead me through
You are the peace in my troubled sea

Fire before us, You’re the brightest
You will lead us through the storm

Even if we know nothing of what lies before us (and we don’t), we can look back and see the joy in so many ways.

Trusting He will lead us through the storm… moment by moment.

**Look back with us and find joy…**

Hey Fish!

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This one.

He waits until after his St. Baldrick’s work this weekend, after four and a half full years of life, two years of cancer and post-cancer fight…to try and break his first bone. 
After two hours in urgent care, we found out it was (thankfully) only a bad sprain.
Undoubtedly, the best part of the entire two hours was watching him chase the fish around the large wall aquarium, yelling: “Fish! Hey, Fish!!”

Never a dull minute with this one.


Seven Pairs of Hospital Socks

He woke before 6:00 -gunning for the day in general and the race tonight- prepared for occupational therapy at 9:00. He picked his own shirt (“I fight cancer – what’s your super power?“), packed his own backpack (trains, cars, and 7 pairs of hospital socks – because you never know when you might need them), and absolutely insisted that Mickey Mouse not only accompany him to therapy, but that he should most definitely be buckled into the front seat.
And why not?
It’s Chase. 


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Running for Gus…

One of the things that our family loves to do is promote the work of Chase’s hospital, Lurie Children’s Hospital of Chicago.  The treatment that Chase had there saved his life, and the doctors, nurses and staff of the hospital are the top in the world.

Because of this, we try to help the hospital in any way that we can.  This year, that includes dusting off my running shoes, training for several weeks using the aptly-named “Couch to 5K” app, and running in the Run for Gus, an annual fun run along the shore of Lake Michigan in Chicago.

The run was started by the family of Gus Evangelides, who lost his battle with brain cancer in 1995, just three months shy of his second birthday.  Today, his family, and dozens of other families from Lurie, run to help raise money to fund brain cancer research at the hospital.  Over the years that the Run for Gus has been going on, it’s raised millions of dollars to fund brain cancer research at Lurie.

This run has been a tremendous opportunity for our family to give back a little to Lurie Children’s.  Brain cancer is one of the leading causes of cancer deaths among children, and fatal for almost half of the kids diagnosed, but there is painfully little research being funded to help stop it.

With some exciting new developments in cancer research on the horizon (see here and here), Lurie researchers could be just a short time away from making significant discoveries toward finding life-saving treatments for kids like Chase.

I hope that some of you might be able to join us in the run on July 24 (even to cheer us on), or help me raise money for the hospital by donating toward my run.  You can do either by visiting my personal page at the Run for Gus website:

I hope you’ll join me in supporting this worthy organization!


Of Legos, Princesses, and Apple Juice…

[For those who read these posts for the sole purpose of Chase updates, please know that the following has nothing to do with cancer and everything to do with our normal (normal?) life.   The following really did occur in it’s entirety and prompted me to think about motherhood being humbling and hilarious in equal measure.]


“Mom!  Mooooooooom!!”  

Why, oh why, is my title never just a one-syllable name?  The shout interrupts the early morning quiet and my mental monologue once again:   “Mom!  He’s sitting on my face!  Can you tell him to get off my face?!”  

“Who needs an alarm clock anyway?”, I wonder.

Make the husband’s breakfast; take the bald one off his brother’s face; make my breakfast; take the bald one off his brother’s face again and put him back in his own bed; make the kids’ breakfast; remind two of the three boys that it isn’t necessary to have every single toy out before 6:30am…and that they don’t have to dump the toys out of the boxes over their heads either.  I silently hope the bald one misses his gigantic resection scar while taking a Duplo shower and go back to the kitchen for the two minutes of uninterrupted time it’ll take to hear my name again.  One more trip back across the house to disentangle the bald boy from his scheme to scale the 6-foot book shelf, and then breakfast is ready.

The voice in my head has begged me many times to keep all my children drinking out of covered cups until they’re at least 18, but I ignore it as I pour apple juice into little open glasses.  This will bring maturity, I think.  This will bring a spill, I think.  I can feel it in my bones.

Surprisingly, the spill doesn’t occur when the oldest boy tries to pick up his juice by picking up the placemat beneath it; his placemat with the faces of all the U.S. presidents on it…  I’m so glad we’ve taken conscious steps to improve his memory and cognitive functions, I think to myself as I scream his name and dive across the table to save the juice.

We ask God to bless our day and keep us all alive.

The youngest two boys are at table wars again.  When they play together, they love each other dearly, but when they’re forced to stare each other in the face over food and good table manners, it’s high noon.  Always high noon.  The bald one nods a single nod and the baby shakes a single shake, and the mimed “yes” and “no” continue at such a pace and with such ferocious passion, that in the time it’s taken me to serve their plates, both boys are standing in their chairs nose-to-nose, screaming at the top of their lungs.  “Fine!  I never gonna play with you again…ever!!”   In a voice filled with calm and motherly reason, I gently inquire into the nature of the disagreement.

I’m told: “He said ‘uh-uh’ to me!”   …and I silently wonder if I should alert the United Nations to a new human injustice.  “No more saying ‘uh-uh’ to each other.” (oh, the things I say now that I’m a mom…)  “Please focus on your breakfast.  We need to leave the house soon to take Chase for his hearing test.”

And then there’s the sound of the glass tipping and juice hitting the floor and chairs.  “Uh, sorry, Mom. I wasn’t messing, I promise. It just fell over by itself. Really.”  I knew it.  My bones are rarely wrong when it comes to sticky apple juice.

The juice is over halfway cleaned when the oldest slumps down the steps clothed in high drama and an outlandish getup that involves every piece of jewelry she’s ever owned.  She informs me that she’ll be answering to a different name today.

I bite back the urge to tell her that I’ll be doing the same thing and instead, remind her that we’ll be going out in public in under 45 minutes and today might be a better day to wear shorts and a t-shirt.  …and to please, for the love of sanity, come and eat her breakfast quickly.

And then there’s the sound of more liquid hitting the floor.  A panicked survey of the table tells me it isn’t more juice, but the baby, with wide eyes and half a turkey sausage stuffed in his mouth, grins and calmly announces: “I pee, Ma.

Dear Lord, please forgive my hateful thoughts towards Huggies and their “overnight absorbency” claims, I think to myself as I clean the floor again.

On the bright side, pee-boy and the juice-spiller were sitting on the same side of the table; so that side of the floor is unreasonably clean for, you know…well, until lunch time.

“Yes, you may be excused from the table.”  “Yes, go get ready, please.”  The instructions fly on autopilot from my mouth as I clean up the table and wipe the other side of the floor, then deal with another princess outfit crisis; remind the bald one not to tackle people; catch the naked baby streaking through the house and clothe him; tell the bald one not to chew on things; remind the princess that brushing her hair is a necessary part of life and that yes, I am truly sorry that her brother jumped out and scared her in the bathroom; instruct the bald one not to spit at people; remind the baby not to say ‘uh-uh‘ to the bald one any more, ever…and then realize I haven’t seen or heard the juice-spiller in at least 5 minutes.   The mental alarm goes off…always fear the silence.

I find him playing Legos on the toilet lid and after pointing out the throbbing vein in my forehead and my quickly graying hair, calmly and lovingly remind him to stay focused.  (At this point in his five years on earth, he truly believes “stay focused” is part of his legal name – as in “Aidan Russell Grey Stay Focused!“)  Has he done a bathroom check yet this morning?  He shakes his head as he dances around the room.  I promptly remind him that reaching the point of dancing is several minutes past appropriate bladder holding boundaries and encourage him to deal with this immediately.

I hear the lid being opened and then the unmistakeable sound of the toilet being missed.  With less than 60 seconds before we need to be in the car and out the drive, I see a small stream arch across the bathroom floor, up the side of the waste basket, and land inside the trash receptacle.  My mental monologue is somewhat impressed as I have a feeling that he couldn’t have hit the wastebasket if he’d tried, but my mental monologue also doesn’t have to get everyone 40 minutes away in 38 minutes.  

Impromptu bathroom deep clean behind me, finally settled in the car with as many as possible behind five-point harnesses, I breathe a sigh of relief and pick up the pieces.

And the sign over the highway tells the traffic times and reminds all who pass that driving fatigued is unsafe…

And I think to myself how noble motherhood can be some days.


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Run For Gus


Thursday, July 24th will mark the second year our family has had the pleasure of participating in Young Associates Board’s “Run For Gus” – a fundraising 5k run/1 mile walk – proceeds from which go directly to our very own Lurie Children’s Pediatric Brain Tumor Program.

This year, we were asked to share why we run (or walk):

Because he is my brother.  I held Chase when he was born, I played with him every day and early one July morning, I was the one who found him having a seizure.  Darcy, age 8

Because he was born when I was only 1 and I don’t remember a time when Chase wasn’t the brother by my side and now I know words like “cancer” and “brain tumor”.  Because I helped hold the bucket while he vomited after chemo and held his hand at his side when they took blood.  Aidan, age 5

Because I was 8 months old when my mom left me with my grandma and went to live days and nights at the hospital by Chase’s side to help him fight and I learned to walk while bringing him toys as he lay on the bed too weak to walk for himself.  Karsten, age 2

Because he is my son and I’ve carried him into operating rooms and had to leave him.  Bob, Chase’s dad

Because I gave birth to him and two years later sat in a room where they told us there was only a small percentage of survival.  Ellie, Chase’s mom

Because I fought.  And I survived.  Chase, ATRT survivor, age 4

Because Chase is where he is today thanks to the efforts of the Pediatric Brain Tumor Program at Lurie Children’s.

Because Chase is our brother and our son.  We run.

For more information on fundraising and Run for Gus, visit Bob’s page here.

Independence Day

Two years ago this day, marked the first day (in my memory) that we noticed something wasn’t “right” with Chase.  Little did we know that he’d be diagnosed in about three weeks. 

One year ago this day, we stood in the shade of a parade line, cradling our 27-pound 3 year old, keeping his IV tubes out from under foot and praying that we wouldn’t have to rush him back to the hospital that night.

This year, he sat with friends at the front of the parade line, a happy, chubby-cheeked boy; he cheered and clapped for those on the fire trucks and ambulances (people he knows and loves) and because he’s Chase and he’s 4 and shameless, he removed his baseball hat to show off his “baseball scar” in an attempt to get extra candy for his siblings and friends. :)

Celebrating life and liberty today.  Happy 4th of July to you and yours!!

Moment by moment…