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Of Breathing, Growing, And Being An Ambassador

Sometimes Chase remembers that things change as he grows and sometimes he doesn’t.  The last time he had a continuous EEG (the process of monitoring the working of his brain for hours on end), he was newly 4, six months off chemo, and his heart and body were both still deeply hospital weary.  He had to be wrapped and held and he screamed the whole time as the wires and goo covered his head, so when I told him on Monday that the time was coming again, he slumped down on the couch next to me.  “Mom, stop talking.  Please don’t say anything else.  I need to breathe.  No more talking… I need to breathe in and breathe out right now.”  And I sat half laughing and half broken that he’s 5 and yet he’s 107 for all of his experience.  

The awkward "can't-climb-into-the-hospital-bed-with-you" snuggle

The awkward “can’t-climb-into-the-hospital-bed-with-you” snuggle

In preparation, we wandered through Target last night and found a new movie and some popcorn because seizures can happen when you go from sleeping to waking and so he had to be able to sleep during the test, and as the kids sat on the old, blue leather couches and munched around giggles at WALL-E, there was another July EEG night on my heart.  One when Darcy and Aidan were still too young to stay up terribly late and Bob and I took turns napping and walking a two-year-old Chase around the block and at 10:30, when I simply couldn’t stand anymore Thomas the Tank Engine and decided to put him to bed, he lost his balance and fell, and my stomach turned, but many things can cause a fall and so we went to bed anyway…never knowing that it was less than 48 hours til we’d sleep in an ICU under the shadow of imminent surgery and tragic diagnosis.  I always think of that night come each July and it was my turn to breathe in and breathe out and remember that by the grace of God, that night wasn’t a minute past, but nearly three years ago.  

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Being perfectly still

This movie night lasted until 11:00 and the EEG day started at 5:00 and in moments like this, grace and coffee are my best friends.  By a mile down the road, it was time to find the nearest bathroom just because that’s what happens with 5-year-olds, and as we sat on the Eisenhower in the long lines of traffic, as soon as he saw the top of the Willis Tower, Chase pulled out his iPad and turned on 10,000 Reasons, because sighting the tower means he’s almost there.  Three years have nearly passed and this is still how he prepares for a hospital day.

Within minutes, we were there in the familiar rooms again and then came the moment he knew things had changed for he sat completely still while they put 21 brightly colored electrodes all over his skull and the only time he ever got cross was when I tried to make him laugh. IMG_1250  And I got to hold his hand and not hold him still.

Chase never relinquishes a fight and it took him until 5 hours into the test to fall asleep and that was 5…long…hours… of sitting in a bed with virtually no radius of movement unless a bathroom was absolutely necessary.

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Sleep finally wins

 

When the test was done, having mercifully lasted only 6.5 hours, he pulled some St. Baldrick’s brochures out of his pack.  They had his picture inside, his and Dr. Lulla’s, and to anyone who would stop, he gave a brochure and said “I’m an ambassador.”  And even though he doesn’t always give Dr. Lulla the time of day during clinic visits, to any and all who would listen, he would explain and point, saying “This is Dr. Lulla and he’s my favorite doctor in the whole world.”  He even stopped a security guard and somehow managed to encourage him to shave his head next year, and it was a precious moment of conversation and meeting, because if I’ve said it once, I’ve said it here a dozen times…this is how Chase rolls.  And I wish you could have seen the tall security guard fold down and give tiny Chase a big hug.  Those are the good moments to breathe in.

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Chase and his “favorite doctor in the whole world”

And now Chase has learned that things change as he grows and what was hard a year ago wasn’t very hard at all anymore, though the sitting still and his mom trying to make him laugh at inopportune moments will probably remain trials for many years to come.  

For now we await results.  No matter what comes of this, we’ll breathe in, breathe out, and take it…

Moment by moment.

It’s Only A Side Effect

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The pieces lie in our hands…

We’ve talked about this.  We are the lucky ones…the ones still breathing.

The pieces are broken and jagged, like a shattered vase, but…he lives.

Many are the times we’ve cried out for wisdom and wandered the farthest regions of our motives in search of the right and wrong in saving treatments that cause great damage.  And we’ve steeled our hearts that if our hope comes true – if, by some means, some day, better cures are found – they will have passed too late for Chase.  The seeds of damage were sewn when we opted to save his life.  We ask ourselves almost every day… are we ready for this?  …whatever this looks like?  …the fruit of our decisions?

Absolutely not.  By grace alone, we stand.

Would we go back?

 Absolutely not.  Ready or not; no regrets.  The pieces are jagged and some are ugly and sad, but we’ve steeled our hearts and have set to fixing the vessel and it never ceases to amaze us how much beauty there can be around the broken.

On Wednesday, we heard our very good news, but that was not the only appointment we had.  We also sat with another doctor.  One who monitors things like growth, organs and hormones.  Chase lay flat and still while she measured and he held his arms out like a bird while she measured more and he stayed patient as she checked everything and we talked family history back into the generations.

Even though his weight is in keeping with other children his age, it’s starting to show already: Chase’s height is having trouble keeping up.  His tiny black dot was still on the growth charts before our eyes, but just barely…like someone clinging to a precipice by their fingertips.  How much longer until it falls off completely?  Nobody knows.

The consultation came down to blood for now.  Tests and blood.  More decisions will come in the next year or two.  Decisions that bring with them risk of secondary cancer.  This is the cost of trying to grow up when your spine was radiated.

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Our hearts are heavy with these things some days, still, even in the heaviest of moments; no regrets.  We set to mending the pieces because it’s only a side effect and some day, Chase will be better than better.  He will be perfect.  In the meantime, we’ll use the pieces to reflect the light.

Moment by moment.

For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.  1 Corinthians 13:12
And he who was seated on the throne said, “Behold, I am making all things new.”  Revelation 21:5a
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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 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

Chase’s Best Shot

I’ve recently been on a slight writing hiatus.  To quote someone I spoke to recently: “That’s good because it means there’s nothing new to write about, right?”  …well, almost.  :)

In truth, my most recent time for writing led to a synopsis of Chase’s story – which was published on a different blog.  I had the honor of being able to share Chase’s story and stats with the St. Baldrick’s Foundation and having it be published on their blog!

If you have never read the story, or if you’d like to read it again, please click: “Chase’s Best Shot“.

Chase with Dr. Rishi Lulla, a St. Baldrick's researcher and Chase's attending neuro-oncologist at Ann and Robert H. Lurie Children's Hospital of Chicago.

Chase with Dr. Rishi Lulla, a St. Baldrick’s researcher and Chase’s attending neuro-oncologist at Ann and Robert H. Lurie Children’s Hospital of Chicago.

~MbM~

EEG Update

We received a call yesterday about the EEG results.  In almost eight hours of monitoring, they weren’t able to capture a single seizure.  This is a HUGE praise!

Despite this really great piece of news, Chase’s EEG is still “abnormal”.  The person I spoke with said that some of that is to be expected as parts of Chase’s brain were removed in surgery – because of this, his brain will always read “abnormal” these types of tests.  However, there may be an aspect of the results that cannot be attributed to previous brain trauma.  This is the part that was unclear.  We have been told that this will be something to discuss in further detail with the specialist at our meeting in about three weeks.

We are so thrilled that there were no seizures, but I spent a good part of yesterday afternoon just working through the word “abnormal“.  As I’ve recently written, this concept of “normal, but not“, has been a difficult paradigm to optimize.  Hearing the word “abnormal” yesterday afternoon just brought back all the questions and many of the frustrations.

We look forward with hope to this meeting in a few weeks and acknowledge that there is never a time that we’re not in desperate need of moment by moment grace.

And Chase is always and forever Chase – about once a day, he turns to us and says “Hey! Remember the stickers on my head? I did that the other day and I was so, so, so brave!”

~MbM~

Chase and Aidan after walking with St. Baldrick's in Saturday's parade

Chase and Aidan after walking with St. Baldrick’s in Saturday’s parade

The Gift

The setting Fall sun cast a shadow across the dashboard of the car as I sat in silence with the phone to my ear.  “I don’t know if you’re familiar with them, but this is what they’d like to do…”  The words of the financial planner rang in my ear as I tried to absorb the information she went on to lay out before me.

A GIFT.

The professional athlete and his wife had heard of Chase and his treatment and they wanted to help.  They knew what God had asked them to do and they did it.

Stunned, I called Bob and imparted the information I’d heard.  We sat in staggered silence on the phone.  This gift would change the course of our lives and our legacy forever.  I have to go.  I was late.  He agreed.  We’d talk later.

I had been in the car on the way to a dinner at the pastor’s house and as I walked to the house, I encountered the pastor walking a child in from soccer practice.  Immediately, unable to contain it, I blurted the news of the gift.  What do we do?  What do we say?   Mere words don’t do this gift justice.  And then he proceeded to smile and tell me to stop for a moment and see it for what it was – a tangible picture of God’s grace.  A gift so big, so undeserved, so beyond the ability to describe that it changes the course of our lives and legacy forever.

That day was a Fall ago now.  Time has passed, Chase is still with us, and we’ve met the givers and found great encouragement in our common faith, and the pastor was absolutely right.  As we move through life, changed because of the gift, freed because of it, given great ability because of it, the gift stands as an always reminder of grace in our hearts and minds.  And it has changed our lives forever.

These words have taken me a full 16 months to write because words still elude me.  Every attempt still falls short in light of the incredible blessing.  All I can say is this:

Oh, the depth of the riches and wisdom and knowledge of God!  How unsearchable are his judgments and how inscrutable his ways!  “For who has known the mind of the Lord, or who has been his counselor?”  “Or who has given a gift to him that he might be repaid?”  For from him and through him and to him are all things.  To him be glory forever.  Amen. Romans 11:33ff

Moment by moment.

~Dedicated to the givers of the gift~

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2014: Looking Forward In Our Own Words…

Last year, I had the family look back on 2012 in their own words.  This year, with a concussion-induced writing break and the first part of January already slipping away, I asked them to look forward.  As I reflect, it actually seems more appropriate.  2012 ended in a way that we needed to sit and process.  2013 ended on a decidedly different note – one that has caused us to look forward with great expectancy.  So here we are in our own words…

Darcy (7):  “This year, I want to go back to our old house.”  [Since Chase’s diagnosis, we have lived with grandparents for immediate and constant assistance – a thing we could not do without –  but our kids miss our condo, and in truth, “our old house”  often means “our old life”.  How I wish I could snap my fingers and give that to them.]

Aidan (5):  “This year, I want to go to Lake Geneva!”  [I’m pretty sure this is the first thing that popped into his head, but it’s his story and he’s sticking to it.]

Chase (4):  “This year, I just want for to have no more cancer and The Polar Express.”  [I don’t think there is anything I could say to elaborate on this.]

Karsten (2):  “I want to sit on my bottom!”  [At the time I asked Karsten about his 2014 plans, he’d just been ordered to “sit on his bottom” at the dinner table because standing on his chair to eat his soup was deemed inappropriate.  In all fairness to him, that’s an excellent goal for 2014 and a much needed one.]

Bob: My thoughts on 2014 center around motion and growth.  We’ve been stagnated under the immediate and the urgent for so long.  Now, we have this chance to move…to be in forward motion, if you will, away from the treatment and the upheaval and to be out from under all of that.  I look forward to 2014 being a season of moving forward and growing in many facets.

Ellie:  In a small way, I echo Bob.  My hope for 2014 is that we find our place.  We have been wanderers in the treatment phase for so long – I’ve written a few times about the urgency that barely allows you to make eye contact with life, and now, we’ve been granted the great gift of a reprieve.  It’s terrifying to stop fighting and live, but it’s amazing to stop fighting and live.  We’ve been given this gift of life – now we actively seek God for our place in it and the courage to assume what He has for us when He makes it clear.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11

With great hope… Moment by moment.

Christmas 2013

Christmas 2013

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I still remember the final push and the rush of pain and relief as the doctor held up the tiny, red child and proclaimed him a boy…and then, as they laid him on my chest, he marveled aloud to the room that the seconds-old child was holding his head by himself.  Strength.

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In that moment, I held my Chase Stratton Elliot for the first time.  Named after his grandmothers, his great-uncle Jim, and the burden prayer that he would run after God, this child of great struggle and the unexpected came; the news of his life shocking us only three months after Aidan.

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I still remember walking down the hall of the radiation center and stepping into the room on that last day, my arms full with a too white child too light for his long bones.  The anesthesiologist stepped to my side and as the milky syringe emptied into the central line, my baby chanted “I’m so brave, I’m so brave, I’m so brave…” until he sighed and collapsed in a deep sleep on my shoulder.  Strength.

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In that moment, I held my Chase Stratton Elliot for yet another time – still my child of great struggle and the unexpected.  I held him and wondered if this would be the last December 12th that he’d be in my arms.

Now it’s December 12th again and my darling child of struggle is still in my arms!  Joy.

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He struggles with the world even now, but his stubborn, tenacious, beat-the-odds, stare-it-down, never-say-die, don’t-mess, you-and-what-army spirit is what makes him our precious Chase.

The first time we sat across the table and heard the awfulness of this disease, I asked the doctors what was ahead and one smiled with great sympathy and said: “Let’s just start this fight, and then we’ll get him through radiation, and then we’ll hopefully get him to age three, and then four, and then…”

He saw age three, he conquered age three, and now he’s FOUR.

Moment by moment.

I believe that I shall look upon the goodness of the Lord in the land of the living! Psalm 27:13

 

Touch Your Nose

Because Chase’s cancer was in his brain, he goes through a series of “games” with almost every doctor he sees…
“Touch your nose”…
“Touch my finger”…
“Squeeze my hands”…
“Push me as hard as you can”…

All small exercises in game form to help understand his cognitive function.
Yesterday, Chase had an appointment with his neurosurgeon and it was apparent from the first moments of interaction that Chase was in rare form (even for Chase).
He solidly refused to even think about playing any games until the doctor -an amazingly sweet man who seems to understand Chase’s energy- said “I bet you can’t…”. Ah, Chase’s motivational love-language: The Dare.
When asked to play “Touch my finger“, he insisted on alternating his hands so that he’d touch his nose with his left hand and the doctor’s finger with his right hand (foiling the attempted exam intent of using the same hand for both nose and finger). When his doctor kindly suggested that he switch hands (thereby participating in the one handed goal of the game), Chase simply switched hands and the right hand went to the nose while the left went to the finger.
(How I wish I had a video of the entire exchange… It was hysterical!)
That any cognitive neurological conclusions were reached yesterday is a miracle to me, but it was apparent that Chase had no lack of stubborn ingenuity and the doctor, no lack of humor. One needs that sort of perspective when confronted with a bald three year old who, when asked to touch his own nose, calmly retorts: “No, you touch your nose!

The final word on the MRI continues to be good. We did discuss some spots on the images which are small leaks – another side effect of Chase’s many treatments. If the veins continue to leak and bleed in his brain, there may someday be complications (more seizures, surgery to remove), but for now, Chase is fine and his doctors will just continue to watch the areas in question.

Never a dull… Moment by moment.

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