Of Independence, Never Graduating, And Needing An Apron

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For months, I’ve been searching for the words to adequately, appropriately share what has been a significant chapter for our family: selling our condo and buying a house.  It has been an up-and-down, stressful, crazy, unbelievable journey that has pushed us to the edge of what we thought we were capable of handling again and again.  More than once, I’ve come to the computer and searched for the right words and a way (any way) to organize my thoughts.  Today, I rediscovered these paragraphs that I’d scribbled down about two months ago when the condo finally sold.  It sold and I felt released in my words and thoughts.  Within four weeks of that time, we’d close on our first house, and within 24 hours of closing, I’d get the call about Chase’s MRI, proving yet again that there is no time when we reach a place of independence…

The post I’ve been wanting to write just hasn’t been formulating properly for some time.  Mental distractions abound: children crying and always needing, the friend having surgery, the cancer child friend of Chase’s that’s been rushed to the hospital after a 45 minute seizure, the therapy appointments and radiation follow ups and the text from my spouse saying he almost ran out of gas on the way to work.

The thought of Susanna Wesley putting her apron over her head for a moment of prayer begins to sound better and better.  If only I could find my apron…

And the crazy irony of a week like this is that I’ve walked the halls of hospitals and begged God to spare my son’s life.

I’ve come to realize in the last several months that I expected to “graduate” the trial of brain cancer treatment at a “brain cancer level” of trust in the sovereignty of God, and yet, here I am, yet again, throwing my hands in the air over so many things that I can’t control – and feeling hard-hearted and bitter that God won’t let me control them in the ways I see fit and then move past them forever and check them neatly off my life list as accomplished.

There is no graduation.  There is no time when we reach independence.  Just because we went through a hard thing and survived does not mean that it won’t be equally hard the next time we’re faced with it.   In fact, it may very well be more hard the next time.  We will never reach a moment when we aren’t in desperate need of salvation and grace.

When the house you thought you sold is going back on the market again, or the house you’ve wanted to put an offer on gets further away and more inaccessible, and the summer lags and there are no answers for Fall and school… somehow, at times, those are the days when it’s shamefully harder to cope than the cancer days.  How do the little things hurt worse than the big ones?  Salvation.  Grace.

For there is no time when we reach independence.

Thank you, Lord.

Moment by moment.

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?” Matthew 6:25-27

Farther Along

Chase doing vitals with Mickey in clinic. Chase wears a red bracelet because of his allergies...Mickey gets to wear a blue bracelet because he has no allergies.

Chase doing vitals with Mickey in clinic. Chase wears a red bracelet because of his allergies…Mickey gets to wear a blue bracelet because he has no allergies. :)

It’s been six days since I last wrote, and there’s very little new to say…

Tuesday night, the doctors finished meeting, and we got the call with a single thought:  

Wait.

Wait, and come down to the hospital; they said.  Come down to the hospital, see with your own eyes, and talk about what happens next.

So yesterday, as the sun came up, with fearful and weak hearts, we went.  It hurt a little to see the white and gray on the screen, folding in and mixing with extra fluid where once was healthy brain.  The tumor site.  And there, on the edges, were small gray marks that looked almost like bubbles of varying size and shape.  This is it?

After hours of talking, you see, it comes down to this: if these new growths -these surprisingly small growths- are somehow, against-all-odds (and there are many) an effect of radiation, there is nothing they need to do now.  Chase seems to be well and unaffected.  However, if the new and tiny growths are cancer cells… there is nothing that can be done right now that will stop them from growing and taking over.  There might be clinical trials and research and options that may grant us a little more time, but all that has been known to cure this vicious disease has already been used to help Chase.

With this in mind, we could open his head now.  We could request a biopsy or even a full-on brain surgery to know which awful we face, but for now, with heavy yet peaceful hearts, we will not.

You see, each family feels differently and chooses differently, but for Bob and me, we made a promise way back in 2012 to do things FOR Chase and not TO him.  To open his head now and try to remove would reintroduce dormant risks to him and would only serve to answer our questions…not save Chase’s life.

How desperately we want those answers!  The thought of waiting eight whole weeks to know is gut-wrenching.  We find ourselves constantly moving back and forth between “How foolish we’ll feel when it turns out to be nothing!”, and “How could it possibly be anything but this cancer attacking again?”.  We wait under the shadow of the knowledge that eight weeks from now, we could have to face the unthinkable.   And all of a sudden, I’m thinking of the swing set I wished we had, and the vacation we never took, and a hundred other little, inconsequential things I wish to cram into a time that is suddenly moving way, way too fast.

…and yet, it could be nothing.  This is our hope…even though we’ve been told it’s an unlikely one.

…and yet, the truth is that we’re all terminal.  Even if you never hear a doctor say it; we are.  How did you think we leave this world?  We’re all terminal.

Yesterday, we were encouraged to invest in Chase’s quality of life.  To make the most of this time.  To do the things we’ve wanted to do.

…and yet, the truth is that we should be doing those things all the time anyway, whether it’s doctors’ orders or not.  Life is short and time is short and a hundred verses and songs urging this same thought are crowding into my mind as I write these words because this is the refrain of life from the creation of mankind.  We’re all terminal and all we have is our today in front of us.

And so, our family waits.  Our questions are not yet laid to rest, our answer are not yet known, and the next eight weeks may well be some of the most excruciating to date, but we have today and we have Chase and we will walk through whatever eight weeks and beyond brings to us…

…moment by moment.

So much more to life than we’ve been told

It’s full of beauty that will unfold

And shine like you struck gold my wayward son

That deadweight burden weighs a ton

Go down into the river and let it run and wash away all the things you’ve done

Forgiveness alright

Farther along we’ll know all about it

Farther along we’ll understand why

Cheer up my brothers, live in the sunshine

We’ll understand this, all by and by

-Josh Garrels, Farther Along

Don’t Tell Me Anything Else

“His spine looks clear and overall, his brain looks amazing, but…

But.  How that one little word changes the tone.  Chase’s attending neuro-oncologist’s voice never wavered as he went on to tell us that for the first time since a January Thursday in 2013, Chase’s MRI is not clear.

There are several small growths in and around the original tumor site.

They were not there three months ago.  

He emphasized that the growths are small, but they’ve grown in a fairly short time span and there appears to be a cyst-like quality to them.

Chase’s initial baseball tumor had a cyst-like quality too.

We’ve been told that there is cause for concern, but not necessarily for alarm.  Something growing where nothing should grow is not a good thing, but there is a chance that these small growths may be delayed side effects from his days in the radiation center.

Early this next week, Chase’s MRI will be taken to a large gathering of all the doctors who work with brain tumors.  We are so blessed to have the collective mind of neuro-oncologists, neurosurgeons, radiation-oncologists, and many others working through the possibilities of care for our son.  After the tumor board convenes, we will conference with Chase’s doctors to determine a plan for Chase and to discuss various care options.

Our hearts are overwhelmed with this new knowledge.  In the few short hours we’ve known it, we’ve vacillated again and again between peace that passes our understanding and a deep, sad terror with the question “How can it possibly be anything but this cancer again?”.

The knowing is a heavy thing, and yet, Chase is still Chase: jumping off the scale just to make the nurses gasp…insisting that he couldn’t be in pre-op room he was given because it had a pink wall and “Pink is for girls! Ew, gross!”

When I got off the phone last night, I pulled him aside and told him that there was something on the MRI.  I told him that there were some bumps that shouldn’t be there and that he shouldn’t be surprised if his doctors wanted to check up on him more.  He looked at me, nodded his head sagely in the way that only he can, and said: “Okay. Don’t tell me anything else. May I go outside?”.

In the few short hours of this heavy knowing, his response has become very precious to me.  He can’t completely understand the full picture of what could be ahead, but he doesn’t need to.  That’s for us as his parents to know.  He has his portion of the information and he can move on in peace for the moment because we are planning for whatever will be needed.

Just so is our necessary response to our Abba, our Father: He’s given us our portion for the day and we don’t know what will come tomorrow or next week, but we can say with certainty “Don’t tell me anything else” and move on in peace because He knows and He sees and has already planned for whatever is ahead…

…moment by moment.

“I stand upon the mount of God with sunlight in my soul; I hear the storms and vales beneath, I heat the thunders role.  But I am calm with Thee, my God, beneath these glorious skies; and to the height on which I stand, no storms, no clouds can rise.  O, this is life!  O this is joy, my God, to find Thee so: They face to see, Thy voice to hear, and all Thy love to know.” Horatius Bonar

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Pile Of Stones

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Walking a few steps in somebody else’s shoes changes how you see their life.  It just does.  If I could have a “redo” option on anything in this life, I think one of the top things I’d want to do is go back and re-respond to everyone I’ve known who heard the words “You have cancer”.

I’ve prayed for them, sometimes helped in some small way, and when the surgery has removed tumor or the chemo has eradicated cells; I’ve praised God with them and been thankful with them and then I’ve mentally checked them off my list and moved on to the next issue.

Does that sound harsh?  It is.  I’m a selfish, fallen person who runs to where a fire needs to be quenched and is easily distracted by tragedy and shiny objects.  This is the hard in life: it’s not the sprint.  …it’s the marathon.  Not growing weary when the road is really long.

I guess I never realized that once you have had most forms of cancer, you’re marked for life.  Your risk for so many things -the primary cancer, a secondary cancer, a secondary illness of another form- are anywhere from heightened to completely assured.  And even if you bear no physical scars of your fight, and the risks remain low, there will always be another reminder: scans.  For some, it may be only once a year (or less), for others, like Chase, it’s every three months.

How long is three months?  Just long enough to forget the last anesthesia, the last image, the last consult and round of follow ups and clinic and everything that binds him so strongly to the hospital and that treatment season.  And just when we forget, we go back and do it again.

I wish I could go back to every person that I mentally, callously dismissed and say that I’m sorry.  I wish that I could call them up every few months and see how the latest scan looked and ask how they’re doing with walking back into that world and pray for them to have strength to face the monster again.  But I can’t.  All that’s left is what’s ahead and the severe mercy in the life lesson taught that we get no “redo” and must make the most of our today.

Why do I share these thoughts now?  Because Chase has another MRI tomorrow.

Two weeks ago, my heart jumped because I couldn’t believe how fast three months had gone.  One week ago, a darkness came -like the darkness of a week before three months ago- a darkness that whispers “What if?” and other terrifying uncertainties.  And now the calm; part accepting, part resigned.  It is what it is.  The only way out is through.  My Anglo roots show through in the “keep calm” and “stiff upper lip” thoughts that lull my heart into a near catatonic state.  Is this peace?  Unlikely.  I’ve accepted what can’t be changed.  There’s an MRI tomorrow.  …and in three months: another.

Where does the peace come in?

The peace comes in walking back through the door we dread.  Back in the hospital, back in the moment of anesthesia and parting from our son, back in the anxious waiting for the phone to ring with news.  I think about how God asked His people to put piles of stones and name the land again and again to remember…so that when they saw it, they’d remember that, even though life was complicated and hard, that He’d been good to them and He’d go on honoring His promises.  This is when the peace comes in.  The hospital is our pile of stones.  Some days, it hurts to look at it because it hurt to be there.  When I walk through the sliding doors, I feel the fear and the pain and the sadness in my home away from home…but I feel God too.  I remember all the times and places when we couldn’t go on and He carried us through.

Sometimes facing the hard is good because it forces you to remember the times you were carried.

Because, at the end of the day, I’m a selfish, fallen person who gets distracted by tragedy and shiny objects.  I hate the MRIs and the apprehension that comes with them, but I need to go back and stand in front of the pile of stones and remember again that He will see us through…

Moment by moment.

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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.

-MbM-

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. 

~MbM~

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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: http://foundation.luriechildrens.org/goto/ewoldt2014

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

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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.]

5:59AM

“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.

-MbM-

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Run For Gus

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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.