Three Years And A Letter

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This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. Joshua 1:9

Friday, July 31, 2015

My Chasey-Bear,

How very far you’ve come!  When they first put a name to the giant ball inside your head, the nightmare of it spreading through your skull and down your back, I read that “long term survival” was 3-5 years, and now, here you are: at the three year mark.

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I know you don’t like me to even speak about the hospital on the majority of days and it’s okay, we can mostly play on your terms, but today is different.  This day in your short history, you were on nobody’s terms and only God himself knew what came next as we learned the unfolding: that you would carry a terminal illness with you the rest of your breath here on earth.

I still remember how small you looked in that first ER bed, how confused your eyes were, and how rosy your cheeks got from all the steroids they pumped in as they tried to save you from yourself before the damage became too great.  

I remember holding the oxygen mask to your face and thinking it couldn’t really be happening, and if we were in a movie, that would have been the moment for slow motion and an audible heart beat.  Because sometimes life feels like it’s slowly tearing apart.

We’ve given you over to Jesus more times than I can count and held you close even more time than that.  Yet here you are, still on your journey, standing smack in the middle of your life road, laughing at anything barreling down on you – and how we love you for your fierce, “you-and-what-army” self.

I know these days turned into years have not been easy for you – and I know “not been easy” is a gross understatement.

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None of us know how much further this road continues, but I know if it’s with you – as I’ve known from the first time you kicked inside of me – it will never be dull.  And so we’ll just keep at it as we have tried to all along… in His grace, moment by moment.

All our love, my darling survivor,

Daddy and Mama

Your grace abounds in deepest waters. Your sovereign hand will be my guide.
Where feet may fail and fear surrounds me, You’ve never failed and You won’t start now. So I will call upon Your name and keep my eyes above the waves when oceans rise. My soul will rest in Your embrace, for I am Yours and You are mine.  ~Oceans, Hillsong United

Of Birth Order, Stature, And What Really Counts…

“Are they twins?”  The lady smiled as she gestured to Chase and Karsten – brothers born 22 months apart. 

The man bent forward to talk to Chase, who will be six in December: “I have a granddaughter who is three like you, too!”

As we sat at the lunch table one day last week, we talked about who had been born first in our family and Chase kept insisting he was the baby.  We tried to point out several times, in several ways, that he is older than Karsten, yet he refused to accept it and finally, the source of his reasoning became clear: “But I’m the baby of the family because I’m the smallest!”  And just like that, it was spoken.  He sees and understands – on some level – the radiation damage in it’s unfolding.  

I’ve considered this moment for some time and it’s here.  Karsten is as tall as Chase.  It’s neck-and-neck, but it’s happened.  Karsten, at nearly four, stands as tall and far more broad than his older brother.  And Aidan, though a scant 12-months older, stands nearly a head taller than both of them.  

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It’s heartbreaking to see this and it’s precious because Chase is alive, and it never stops being amazing to hear his wise, old voice come out of such a tiny body.

So, I’ll keep the smaller size of clothing in the drawer knowing Chase will probably use them a little longer.  And if stature were measured in experience, he’d already be ten feet tall.  

Moment by moment.

“The Lord doesn’t see things the way you see them. People judge by outward appearance, but the Lord looks at the heart.” 1 Samuel 16:7b

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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.

Someone To Know Me

He’s afraid of almost nothing outside the hospital, but he hates change like the plague.  I mean, knock-down, drag-out, hates it straight up.  One time I changed his bed without telling him and he lay on the floor and screamed until I could persuade him that new sheets weren’t the end of the world.  And I tell you truth when I say that I’ve just gotten him to wear shorts in the warm weather and not steal his winter hat onto the school bus in the June 80 degree days because he doesn’t remember wearing shorts last summer and all he has in his memory are long pants and winter coats.

Everything I’ve ever read about a brain hurt by surgery and tumor says this is not uncommon.  It takes longer to adjust and more to cope and the little things are always very, very big.  If there’s no mental paradigm for something, it’s usually treated with anything from caution to outright hostility.

Three weeks ago now, Chase was to start summer school, but we sent him to vacation bible school at the church for the first week instead.  He wanted to be with his siblings and, his life being so different as it is, I couldn’t refuse him this opportunity.  

The Monday morning of “VBS” rolled around and suddenly, he didn’t want to go.  When I asked why not, he would evade by screaming about something or simply leaving the room.  Finally, he calmed down, crept back into the kitchen sheepishly, and sighed.  “Are you ready to talk now, Chase?”  He nodded and then whimpered quietly.  That sound meant only one thing: Chase was afraid of something. 

We sat cross-legged on the floor of the kitchen and talked until I realized that all the screaming had been a sabotage of sorts because while he knew the church and the people, he didn’t remember “VBS”…something he preferred to refer to as “PBS” or “PBS.org” (for real), and because he didn’t know it and couldn’t account for it in his brain, it terrified him.  

As we talked, I asked if he wanted to pray and he nodded silently and so we prayed that God would give Chase peace.  I said “Amen” and his head shot up with a quick question.  “Mom?  Will you pray that my teacher would be somebody who knows me? Please? I need somebody who knows me.”  Not just someone that he knew…no, someone who knew him.

An hour passed and as we walked into the brightly lit auditorium, I watched Chase lose his fear to intrigue as he took in the jungle set and the replica of Mount Kilimanjaro (a part of the week’s theme).  We walked forward to find his seat and at the end of his row, checking the children in, was his 2-year-old Sunday school teacher, a beloved woman who taught him that God is good and glorious and always with us and she said it so often to him from the day he turned 2 that when he lay on pre-op beds and in hospital rooms, when all else pushed aside in his fear, it was those words from the Sunday school room – “God is near me” – that would come to him and he’d sing them softly as he’d wait for the doctors.  This was the woman who’d walk him through the week.  

I’m putting this story down for you to read because I often fall into thought that finds the hard things unjust and the good things deserved and the small things somehow just getting ignored.  So, I’m writing this here and now because life comes with crazy ups and downs and sometimes, I forget to hand the small things over to the One who knows and when I do remember, I’m often too busy to record exactly how He surrounds and blesses.  Chase prayed for someone to know him.  

Stopping to be thankfulmoment by moment.

Chase and Mrs. Worley

Chase and Mrs. Worley

Still Being “Me-Me”…

Some time ago, I wrote that we were given reason to believe Chase might have cataracts.  As only Chase can, he went about the final diagnosis in the most interesting way possible, going “for broke” in the eye department last Monday – having contracted pink eye over the weekend before his meeting with the specialists.

The morning turned into a typical Chase-at-the-doctor type morning, logging in several hours start to finish, one bargaining session [“Come out from under that chair, Chase…I mean it, Chase…], and at least one good, old-fashioned three-people-to-hold-him-down moment.  Can you imagine having your eyes dilated in the middle of rampant conjunctivitis?  Chase could not.  [And to be fair, I wouldn’t put it on my wish list either…]  Whether it was the feeling of light sensitivity, not being able to see, or actual discomfort, I’ll never know, but he didn’t stop screaming for nearly two hours after the appointment and only stopped when he fell into an exhausted sleep leaning on my shoulder.  It was a Monday for the ages…

Waiting to see the doctor

Waiting to see the doctor

The less than great news is that Chase does indeed have cataracts and his vision is quite poor.  The cataracts are being attributed to his radiation treatment.

Radiation – the very thing we elected to do when chemotherapy alone wasn’t working to take the cancer from his body.  

Radiation – the component that very likely saved his life.  

We knew these things might come.  We’ve known them from almost the same day of his diagnosis, but that doesn’t mean it doesn’t hurt like a punch to the gut when you see him sitting in the chair, or hear the outcome and know it’s because of decisions you made.  

This is the hard part of Chase’s life and treatment – the offered doors are two: death, or damage.  To date, there is no third door for AT/RT.  

However, even with all the difficult, there is really good news, too.  Though Chase needs glasses and will need to be monitored every few months for the foreseeable future, the doctor on his case indicated that Chase is still able to see around the cataracts and that surgery is not a necessity at this time.  We realize that cataract surgery is not a big deal as far as surgical procedures go, but when your anesthesia stats are in double digits already, it’s nice to be able to prolong yet another time going under and more work being done.

Chase is very concerned about his need to wear glasses.  He keeps asking me if he’ll be able to take them off at the end of the day and go back to being “me-me” – the phrase he’s using to define the real him – as if the wearing of them will turn him into somebody else.  We keep assuring him that he’ll still be Chase even with the glasses on his face and that many people around him – many that he knows and loves – all wear glasses.  The glasses won’t change his person, just his sight.  And given how poor the number on his current vision is, we look forward to opening up life for him and allowing him to see more.  As always, we’ll take it…

…moment by moment.

Even superheroes get pink eye...

Even superheroes get pink eye…

The End Of A Moment: Intersecting Lines

You guys, for real… On Friday, Chase finished preschool.

I know people are always wishing that their babies would stop growing up and moving further on and away with their lives and I get that, I really do, but in Chase’s case, I love the growing up because it’s what life is about and there have been days and seasons when I didn’t know if we would have those life chances with him.

And for real… this is the kid that I held when he was too weak to walk, and I balanced him when, at age four, he learned to jump on two feet, and I sat with him as he diligently traced “exes” and “crosses” on paper – because intersecting lines were something his brain needed to work hard to figure out. Chase has gone from all these challenging places to taking the intersecting lines and spaces and forming the letters of his own first name.

He holds it in his hands here – not “Last Day of School” or anything else, but this, his name – a part of who he is.

For weeks now, he’s practiced and traced and when I asked him if he’d put it on the sign, he asked me if it had to be perfect, because Miss Marlene, his teacher, said it didn’t have to be perfect.

But, see…? It is perfect, the whole moment is perfect because it’s Chase and he’s gone further than anyone dared hope.

We are so blessed.  Moment by moment.

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And It Comes Yet Again… **UPDATE**

She’s out and she’s amazing. The surgeon said she handled surgery and anesthesia like a pro.

The biggest joy in this is that he also removed and tested several lymph nodes, all of which were negative for cancer, so, pending the official pathology report, it would seem that while the cancer is invasive, it never spread further than the breast.  We are deeply thankful for this really, really good news.

She went in with great strength this morning and said she felt “wrapped in peace” – this woman blesses me all the time.  The biggest prayer tonight is for rest and sleep as she is pretty uncomfortable and hooked up to a lot of things.

Today was completely crazy, but a good cancer day.

-MbM-

And It Comes Yet Again…

And it comes yet again… the hours before a loved one’s surgery…  

There was one night when I was very small that I sat, crouched in the dark hall, huddled on the old, brown carpet outside the door and listened quietly.  I’d been wakened from a sound sleep and I knew if I were found, I’d be in trouble for getting out of bed, but I couldn’t stop myself from coming close to hear.  My mom was on the other side of the door and she was ill.  She’d gotten out of her bed and tried to make it across the room and, feeling too faint, had cried out for my dad in the middle of the night.  I still remember the sound of her voice as it woke me because children remember the sound of their parents when the tones are helpless.  That’s the kind of thing that sticks with you for many long years because mothers are strong and when you’re little, they’re strangely larger than life.  Mothers make skinned knees hurt less and storm clouds less ominous, and everything feels better when they’re near.  Much like “Marmee”, Louisa May Alcott’s beautiful matriarch to the March sisters, when my mother was in the room, all the upside down was set to right.

Tomorrow, my mom goes into surgery to remove the cancer and a part of her body with it.  And it’s strange how, even though I’m grown with babies of my own, I feel like a tiny child in the hall again and the woman who could make it all right is having to undergo great wrong and it feels so helpless.  

Even so, her words have remained sure… she doesn’t fear the cancer or the surgery, or even the potential complications: “I know where I’m going when I die”, she said.  And if ever it hits her, she worries about the drugs they’ll use on her.  She’s always been so careful with those things.  And she worries what she might say when she’s under anesthesia, and because it’s a genetic tradition on my father’s side, we laugh and joke about the worry moments because somehow, it works for us, and if we’re honest, we get funny looks when we’re trying to be serious, so who are we kidding anyway?  She got injected with something radioactive and the text came from my dad – a message to let us know she was okay and that she’s beautiful when she glows.  

But when you strip away the laughter, the strength, the years, and even the helplessness and fear of it all, what is left?  Especially in these days when, it feels like there’s cancer everywhere I turn…what is left?

I want to share this that she wrote:

As I walk this path I am being lovingly and unhesitatingly escorted by dear women who are willing to return to this route and walk it with me. They are precious friends whose strength and encouragement has been forged in the fire of their own trial, and from their loving dependence on the Lord. 

“Praise the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort. He comforts us in all our affliction, so that we may be able to comfort those who are in any kind of affliction, through the comfort we ourselves receive from God.” 2 Cor. 1:3-4

One of her greatest joys in this to date has been watching links form in the chain of ugly turned very beautiful; the awe of knowing a little more of Chase’s journey now, the wonder of those coming around her to share their own experiences.  And she is willing to be helpless to know what it’s like for others.  That’s something kind of breath-taking if you really consider it.

And so it comes yet again…these hours before the surgery.  Tonight and tomorrow and in whatever follows, we are all drawing near to the One who loves us in brokenness and understands our helplessness and takes the ugly things and pours them out in great beauty for His glory and our ultimate good.

Mom, I’m so proud of you.  See you on the other side… 

Moment by moment.  

With my mom in her beloved Germany, June, 2001

With my mom in her beloved Germany, June, 2001

Superheroes Always Win

Chase spent yesterday afternoon at “his hospital” meeting with audiology and neuro-oncology. We are so blessed to be able to report that any further hearing loss is negligible and Chase’s hearing tests in the last year are virtually unaltered.

We had a good meeting with Chase’s neuro-oncologist as well and were officially granted a four month reprieve from scans and clinic – at which point, Chase will have been off treatment for about TWO YEARS. Wow – even typing that blows me away. 

It was superhero day at the hospital, and our bald superhero [with his cancer-fighting super powers and his faithful sidekick "Super Duke"], decided to play it up during his hearing test, telling the audiologist: “If I get all the pieces [to this game] then I win, but if you get all the pieces, then...I STILL WIN.

Ah, yes. That’s how Chase rolls…

-MbM-

"Super Duke" checks the headphones to make sure everything goes well.

“Super Duke” checks the headphones to make sure everything goes well.

Listening to sounds and voices...

Listening to sounds and voices…

Even superheroes need their vitals checked...

Even superheroes need their vitals checked…

Clinic Selfies :)

Clinic Selfies :)

Of ‘P’ and ‘T’ and Betting the Farm…

He took the envelope out of his backpack and placed it on the kitchen table when the days were still short and cold.  “This is for you.”   In a matter of seconds, I held a vision screening brochure in my hands.  On the front, the words “passed test” had been crossed out in red and there was a note stapled with an exam sheet to be taken to an ophthalmologist.  Chase had failed vision screening.

I’ve done many interesting things with Chase, but one of the more challenging was performing any semblance of a useful eye exam.  In a paradigm where letters, numbers, shapes, and spacial agreement are all so highly relied on to diagnose, a child who struggles with all of those thing as well as memory and direction poses quite a dilemma .

Did he call that “P” a “T” because he can’t see it or because he doesn’t remember the name of the letter?  

Is he saying “I don’t know” because he can’t see or because he can’t remember the words to say that drawing on the screen is a man on a horse?  

Is he saying 2 is clearer than 1 because it really is or because it was the last option given and it’s the only one he remembers?

I learn in life with Chase on the regular that I take things for granted far too often.  But, through a prolonged time of trial and error, we devised a system to try and put the tests into words and actions that Chase could work with – including tapping his chest on the right or left side to identify which was clearer (as he gets his right and left confused).   I couldn’t help but agree with him, for, as the lights came back on, he hopped off the chair, turned around to look at us, giggled a little and said “Well, that was awkward.”

Despite the difficulties of the exam, Chase was still Chase, and at one point, for that puff of air in the eye that even I dislike, he ran a bargaining session so experienced and smooth that the tech and I ended up promising an extra glass of juice at lunch (a luxury usually only given at breakfast), iPad time, stickers, and we were about to bet the farm when he finally agreed to the terms.  That kid knows how to work a room.

At the end of the long morning, as we sat in the exam room with the doctor, she looked in Chase’s eyes, looked again a little closer and longer, and then turned and asked if he’d been on steroids as part of his treatment.  In truth, Chase had less than two weeks of steroids around the time of his brain surgery, but she seemed perplexed and then explained: both of Chase’s eyes were filled with cataracts and that is something she usually sees from long periods of steroid use.  We concluded the eye exam with a recommendation for a local specialist to make an official diagnosis and treatment plan.

As far as this preliminary exam could be given, it would seem that overall, Chase’s eyesight is quite poor, but that he is still seeing fairly well around the cataracts at this time.  Our prayer is that Chase can retain full sight and that surgery can be put off for as long as possible.  We meet with the specialist in the next few weeks.

After a brief discussion with his oncology team, there is strong reason to believe this is due to radiation.  More collateral damage… yet, Chase lives.

Choosing hope and thankfulness.  Moment by moment.

The man looked around. “Yes,” he said, “I see people, but I can’t see them very clearly. They look like trees walking around.”  Then Jesus placed his hands on the man’s eyes again, and his eyes were opened. His sight was completely restored, and he could see everything clearly. Mark 8:24-25 NLT

Chase practices cutting along a line we aren't sure that he can actually see

Chase practices cutting along a line we aren’t sure that he can actually see