Monthly Archives: August 2014

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

photo (6)

Pile Of Stones

photo 2 (2)

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.

photo 1 (1)