Giving Thanks

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Last year and this year too, we take a moment to reflect…

This Wednesday in 2012, Chase was deep into radiation in addition to his chemo therapy and was staying in the hospital. He was weak and his counts were very low, but he was stable and so, late in the afternoon of this Wednesday, I held his weak and white body by the window and stared out at the lake, shielding his face – his eyelids covered in scabs from where daily anesthesia tape had ripped the tender skin – and prayed that they would let us go home for Thanksgiving.  And then Dr. Goldman entered the room (as only he can enter a room) and told us to go.  And we went.

Two years later, we are thankful for so many things and our darling Chase is still with us to celebrate.

Giving thanks… Moment by moment.

“My heart is filled with thankfulness
To Him who walks beside;
Who floods my weaknesses with strength
And causes fears to fly;
Whose ev’ry promise is enough
For ev’ry step I take,
Sustaining me with arms of love
And crowning me with grace.” [Getty, Townend]

Of Giant Trees, Giant Buttons, and Not Wrestling…

Most of you know about Chase’s wonderful wish: his “park” in the back yard.  However, our connection to Make A Wish led to one other amazing thing…a thing we didn’t even know to wish for, but a thing that can only be described as an amazing dream.  Chase was invited to come to the Macy’s on State Street, to the famed Walnut Room, and help light the three-story tree to kick off the holiday season in the store and start Macy’s “Believe” campaign.  We would find out less than 24 hours before this occurred that he would be alongside Ryan Seacrest and American Idol winner Lee Dewyze.  

How I wish that each of you could have been there with us and experienced this day! 

The great tree

The great tree

Being ushered past long lines to our complimentary tables (I mean, like that isn’t a dream in and of itself!)…

Meeting staff, servers, people in marketing, store managers, corporate leaders: all so passionate about what they do in the world of Macy’s and how Macy’s affects the world…

Writing letters to Santa and mailing them with Lee Dewyze…

Right before the 12 high-fives...

Right before the 12 high-fives… [credit: Ryan Blackburn, Make A Wish]

Watching Lee be super cool as Chase wanted to give him twelve high-fives one after the other… (That’s not an exaggeration.  We counted.)

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Having the Macy’s photographer take pictures of our family in front of the great tree and Karsten (in an elf’s hat, no less) sulking on the floor and refusing to smile… 

How we roll when it comes to family pictures

How we roll when it comes to family pictures

Being told that Ryan Seacrest wanted to meet our family before the tree-lighting ceremony…

Being ushered into a media-filled room waiting to hear from Ryan Seacrest and watching him hunker down and focus on Chase…

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[photo credit: Ryan Blackburn, Make A Wish]

Hearing Chase ask Ryan (there to launch a very classy line of menswear) if he liked his dirty, beat-up, favorite Spider-Man shoes…and hearing Ryan answer “Yes, I do!”…

Having to utter the phrase “Boys, remember that time when I told you that we don’t wrestle in front of Ryan Seacrest?”…

"Mom, I just ate Olaf's head!"

“Mom, I just ate Olaf’s head!”

Our amazing server, Stephanie, who put up with our crazy table full of small children and saw to our every need…

Aidan falling off his dining chair…(more than once

The beautiful store manager, Kim, who spoke of children like Chase with tears in her eyes…

Seeing people stacked several deep, lining the balconies that look down into the Walnut Room…and the bank of cameras and media personnel and very bright lights down in front…waiting

Chase's view of the room

Chase’s view of the room

Hearing the introductions from stage: “…Ryan Seacrest, American Idol winner, Lee Dewyze, and our special celebrity… Chase Ewoldt!”…and knowing they honored his fight with their words…

Listening to Lee dedicate his song to children like Chase and then sing the words: “I can’t stand up on my own don’t need to stand alone lift me up so I can see the light…Don’t be afraid…”…

Seeing our other children being invited on stage and knowing that their own often difficult lives as the siblings of a fighter were being honored…

This IS my happy face

This IS my happy face

Hearing Bob and myself being invited as well and not accepting as our fourth child, aka: “the grumpy elf”, refused to go anywhere near a stage…  

Watching Ryan call “Five… Four… Three… Two…” and hearing the crowd chant the count, getting louder and louder with him…

Watching my children, surrounded by special people and so much love, start to depress the giant novelty tree-lighting button right around “Two…”…because it was too hard to wait…

Hearing Ryan’s voice call “One!” as the room transformed and the light shot up to the ceiling, three stories above us…

The cheering of the crowd…

Aidan running over to me with the guitar pick from Lee’s performance and his voice saying “Mom! Look what I got from my new friend!”…

Watching Ryan lift Chase to stand on the button (the size of a small column) and Chase’s arms going into the air, triumphant, as he watched the lights and heard the sounds… He’d pushed the button and he knew it.  And the ceiling said “Believe”.

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[photo credit: Alyssa Horrall, Macy's]

A truly precious day.

Moment by moment.

~Our family’s heartfelt thanks to Dana Kuhman Whitty, Ryan Blackburn and every beautiful soul at Make A Wish, Alyssa Horrall, Kim Groth, Martine Reardon and the entire Macy’s team who made us feel like cherished family, the beautiful Starr Royal-Burrell of Build-A-Bear who invited our children to come build bears (or dogs, or Olaf the snowman), the incomparable Ryan Seacrest and the Ryan Seacrest Foundation, and the wonderfully talented Lee Dewyze and his high-five skills.~   

Note: We eagerly await (and look forward to sharing with you!) the official photographs from Macy’s at a later date…please, stay tuned.

The Caregiver’s Perspective

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Speaking as the primary caregiver of a brain tumor patient who is technically classified as “terminally ill“, my life has more sad moments and nightmare scenarios than you can imagine.  …And I wouldn’t trade any of it for all of the moments I have with Chase – even on his worst days.  Life is unspeakably precious and you cannot imagine beforehand the beauty and refining to be found in painful life and the living of it, can you? 

My life has greater purpose and meaning because I’m caregiver to a terminally ill patient. I grow and am strengthened when I suffer with him and learn to love the way he’s changed. I literally cannot imagine having the decision to walk this road with Chase taken from me to keep me from pain and bad memories. At the moment of diagnosis, it’s already too late.

The redemption comes in walking the road…the whole road.

Moment by moment.

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18

Of Cheese, And Slides, And Knowing All Along

We took the scarf off and he saw for the first time...

We took the scarf off and he saw for the first time…

Wednesday

Chase crouched and fingered the mulch in the yard, “Mom, I know what my surprise is…  You’re going to put a park in the yard.  I know because parks have cheese like this.”  Sometimes when Chase can’t think of a word like “mulch”, he says words like “cheese”.  And some days, he’s just too smart for his own good.

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Saturday

The man said that some installations go quickly and others don’t.  Seven hours after the start, right before the sun went down, we walked Chase outside with one of my scarves tied around his eyes and revealed his special surprise… a huge play set with a fort.  A big smile crossed his face and he sighed “A park…”, and then, “Can I play on it?”

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Just like that.

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Because, why wouldn’t we put a park in the back yard for him?  He smiled as if he’d known all along.  And then he and his siblings explored every aspect until it was too dark to see…the swings, the tornado slide, the fort, the climbing wall, the place where the sand will be delivered next week…  Their giggles were contagious and the wonder in their eyes…the wonder that this was their own, forever, drew us in like warmth in a chill.

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So thankful for all our Make A Wish friends and helpers who put together this moment of joy for Chase and our whole family.

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Moment by moment.

Of Wishes, Possible Delays, and Giant Trucks…

Oh my word!  What a day…

I got a call from the freight company delivering the wish earlier today.  They said the wish was on a huge tractor trailer and that the driver most likely wouldn’t be able to make it down our narrow street.  They said that I’d receive a call to reschedule delivery on a different day when they could put it on a smaller truck.

Around 2:30 this afternoon, I heard the sound of a truck outside the house and peered out the window to see a MASSIVE semi parked in front of the house!  The driver got out of the cab and told me that when he’d read the shipping manifest and seen that this was for Make A Wish, he knew he had to try and get down our street.  Can you believe that?

Look at the size of this truck!  Can you see Aidan standing at the back?

Look at the size of this truck! Can you see Aidan standing at the back?

The wish was so large that he couldn’t use the regular unloading equipment and so he called someone else (who works for the corporate office of the freight company) to come help him and the two gentlemen made about 5 trips unloading all the supplies for the wish from the truck into our garage. 

I wasn’t kidding when I said that you meet amazing people!

Also, this kind of craziness and waiting is so much more fun than waiting for a delayed operating room… 

Installation is scheduled for tomorrow!

-MbM-

Stacy and Chris (the amazing driver) our angels from Old Dominion Freight Lines

Stacy and Chris (the amazing driver) our angels from Old Dominion Freight Lines

 

In Anticipation…

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You guys!  We’ve poured our hearts out this week and right now, I can’t even begin to articulate how much all of your encouragement and prayers have meant to us.  You’ve taken the time to read our words, follow our stories, and in this busy, busy life, that’s incredibly precious.  Thank you.

You’ve anticipated the absolute worst with us, so I’m super excited to invite you to sit with us this weekend and anticipate something really amazing.

For a year now, Make A Wish has been incredibly patient as we’ve cycled through idea after idea while we tried to find the one thing that best fit Chase and worked for our family. We finally decided and it’s happening this weekend!! It’s not a vacation – we opted for something 24/7 that encapsulates Chase’s energy. :)

Can you tell what I’m talking about yet?

On Tuesday, MRI day, a landscaping crew came to the house to prepare our poor yard. I wish you could have seen and heard what we did: the owner was out and working with the crew, saying that he didn’t care what it took…they wanted to do this special thing for Chase.  Bless him.  This is probably the most amazing thing about working with Make A Wish: meeting the people who give and dedicate and pour their hearts out for kids like Chase.  Bless them.

And sometime today or tomorrow…this will happen!

Here’s the thing… Chase doesn’t know.  I mean, he knows something is up because we found creative ways to talk to him and make sure we captured what he wanted, and a sibling let something slip, but he doesn’t really know.

Can you tell what I’m talking about yet?

So, come and anticipate this with us. It’s been a hard, long week and this weekend is going to be really special.

-MbM-

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The Good, The Bad, And The Purpose

Chase and Daddy in pre-op - the OR was delayed and so Chase had to go without eating or drinking anything for over 4 hours.  He did amazingly well.

Chase and Daddy waiting in pre-op

It’s not good.  It’s not bad.  It just is

The growths in Chase’s brain have grown…(bad)…but only minimally…(good).  And the results of his spinal tap are negative for cancer cells…(good)…but there’s an anomaly of some kind at the base of his spine which needs to be watched carefully…(bad).  So, the growth is bad, but the slowness of it is good, and in the meantime, it’s still not clear if this is recurrent primary tumor that’s dormant and about to grow fast, a secondary slow-growing tumor, or any tumor at all.  So, to sum up, we’re essentially in the same place as we were 69 days ago…just slightly larger and stranger.

In post-op after the MRI and spinal tap

In post-op after the MRI and spinal tap

We feel wearyfrustratedguilty

We are not frustrated at the cancer.  Never at the cancer.  It doesn’t hold that much power.  No, we’re frustrated and a little angry because waiting for scans like this is staring down the frailty of life on this earth and we’re powerless and feel it keenly.  We ask again and again “Is this the day we find out that he’s dying?”  …and there are no answers.  It’s not for us to know right now.  And we chafe under that knowledge that we lack.

The struggle to make the most of those times in-between the scans and the questions is a very strong, hard one.  And honestly, some days we win and some days we lose, and then we feel guilty because the frustration wells up on a day like today where we didn’t need to have “the talk” with our doctors and we were given a reprieve for six more weeks.

So, here we are…six more weeks… and then we do this again.

Waiting for the neurosurgeon today...playing "basketball" with a clean vomit bag and a baseball.

Waiting for the neurosurgeon today…playing “basketball” with a clean vomit bag and a baseball.

And by grace, we’ll fight the frustration and guilt because we believe that nothing happens to us that is not sovereignly allowed by a loving God – which means this cancer has a purpose.  And the waiting has a purpose.  And what we learn as we turn over our frustration and guilt and impatience for answers all have purpose.  And without a doubt, I can write that there are so many other purposes to this that I can’t identify and may never know in my lifetime.

This wait feels like the delay of a journey, but in reality, it is as much a part of the journey as the answers we seek…maybe even more.

Waiting more and coloring to pass the time

Waiting more and coloring to pass the time

When we wait like this, we have nowhere to turn but to Him and accept what He’s lovingly given.

So be it.  We wait with expectation and purpose

Moment by moment.

I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage; wait for the Lord! Psalm 27:13-14

[Chase is currently scheduled to go in for another short, un-sedated MRI and meet with his neurosurgeon on Monday, December 8th - at which time any growth/change will be re-evaluated in regards to brain surgery or biopsy. Thank you so much for being on this wild waiting journey with us.]

68 Days

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68.  The number of days since we heard “He looks good, but…“.  68 days we’ve waited and it’s here.  Tomorrow, Tuesday, October 21st, is the MRI.

We’ve filled the days with closing on a house, starting new schools, moving, holidays, family visits, and so many other things.  And as they always have, the thoughts of Chase’s cancer have washed over us and ebbed again and again.  Some days pass with hardly a thought and others…others we cling to each other and those around us, begging prayer and help to hold us up because the weight of it seems too much.  Joy and pain constantly entwine around the reminder that we have absolutely nothing that was not graciously given to us by a loving and sovereign Father.

And you know what?  We’ve waited 68 days, but do you know what I absolutely forgot in the midst of a packed family weekend?  It’s been one year.  Thursday, October 16th marked one year since the last chemo went in and the machines went silent and we wondered if he’d ever recover and how on earth the cancer would stay away when we’d stopped fighting it.  One year.  So think about that tonight and tomorrow as we all sit under the MRI and the spinal tap and the imminent for better or worse news.  It’s been a whole year since chemo ended.  What a gift.

Chase and Aidan waiting for the ceremony to start

Chase and Aidan waiting for the ceremony to start

And you know what I wish I could share with you?  This last weekend, we took our first family vacation in over two years to attend my baby sister’s wedding in Oklahoma.  We were all together.  The whole family.  From all over the world, actually.  We were together.  And I was out on the dance floor with the kids and watched my baby sister, in her creamy lace gown, bend with the flowers in her hair – hands holding Chase.  And him in his blue gingham and khaki and they danced as he smiled up at Aunt Carrie because she was a princess.  I wish I could share that precious sight with you and that thankful rush of joy in the midst of it all.  What a gift.

So here we are.  The wait is about to be over.  68 days have passed in the 365 days that were an unexpected gift.  And we continue as we always have and always will…begging for grace and peace…

Moment by moment.

**We’d so greatly appreciate prayer for tomorrow and Wednesday.  Chase will be under general anesthesia and will go through a very detailed MRI and then be transferred to a different floor -still under anesthesia- for a spinal tap to check for the presence of cancer cells in his spinal fluid.  We will come home and rest tomorrow night and then go back to the hospital on Wednesday to meet with Chase’s teams of doctors and hear results and make decisions (if necessary).  We so appreciate each of you.  Thank you**

“You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.” Psalm 16:11

Family

Family

Of Pumpkins, and Airplanes, and The Green Bay Packers…

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We’re a little under three weeks away from the next MRI.

Yesterday, while at the grocery store, I was able to stop saying “Don’t lick the cart” long enough to help the kids pick two big, orange pumpkins for the front porch.  In a mad effort to redirect children from pulling items off the shelves and insisting that their quality of life was in serious jeopardy if we didn’t get chocolate pudding cups, I suggested they work on naming the pumpkins.  The names “Darcy”, “Aidan”, “Chase”, and “Karsten” were almost immediately suggested and disqualified as four names and two pumpkins don’t go together very well.  This moment may also have included a few slight disagreement phrases and the completely not-dramatic screech of “Fine! I’m never going to play with you again as long as I live!”.  On a semi-related note, it’s very hard to stomp off in high dudgeon when you’re sitting in a grocery cart.

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Next came the inspired suggestion to name one of the pumpkins “Dr. Lulla” after Chase’s favorite doctor.  Ever the fairness moderator, the oldest child suggested that they name the other one “Dr. Fangusaro”…but then the entire group realized that they’d have no third pumpkin to name “Dr. Goldman”, and as Dr. Goldman is the neuro-oncologist who gives them candy, they realized that they could not, in good conscience exclude him.  …so “Dr. Lulla” got scrapped.

The oldest then suggested in her most existential voice that the pumpkins should be named “Dan” and “Brendsel” as he’d preached last Sunday at church.  And not to be outdone, the next oldest suggested -in his most existential attempt- that maybe they should be named “The Church” and “The Earth”…or, “Bob” and “Rob”.  (He couldn’t decide which seemed more existential.)

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Then, the youngest looked out the window, saw a jet passing overhead and suggested they should both be named “Airplane”.  The bald one, who was sitting on the other side of the van and couldn’t see the jet out of his window, insisted that there was no airplane and a minor argument on the finer points of never playing with each other ever again ensued.

At which point, feeling truly inspired, the second oldest broke into the argument: “You know…that team that plays football that we hate and they eat cheese?!”  “You mean the Packers?”, I asked, as I realized that he probably doesn’t have a shot at pro ball.  Ever.  “Oh yeah, those are the ones!”, I was assured.

At this moment, I found myself back in the driveway of my own home and the discussion was thankfully over and the pudding cups successfully dodged, but the question of pumpkin names remains… The current favorites are “The Green Bay Packers” and “The Chicago Bears”.

Happy Fall.  Never a dull…

Moment by moment.

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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