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

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…**