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

Patiently I Wait His Day…

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There are a million ways I could classify the strength and character of my mother, but never has it been so clearly showcased as in the days of Chase’s treatment.  She held him when he cried, spoke words of comfort and calm when he could find none, and gave of her home, her time, and even her rest as she’d wake extra early or stay extra late just to be able to hold him on hospital days.

We often laugh in amazement at the turns life takes and shake our heads at the deceitful notion that occasionally creeps in – the one that says we’ll somehow outgrow our need for a moment by moment life.  We laugh a little because we’re continually reminded that outgrowing the constant need for grace is not something that will ever happen as long as we draw breath.

This week, the moment by moment took us back to a place we hoped never to return: to another cancer diagnosis.  This time, it is not the bald one being held, but the strong one doing the holding and the color is pink.  The prognosis is good and there is much to be thankful for in this first week of unfolding, but the realities of scans to check for spreading disease, surgery and treatment remain intense and imminent.  We will fall again, but as always, our prayer remains that we fall towards Him who understands far more than we ever will in this life.

Always and only… moment by moment.

“Whatever my God ordains is right

He never will deceive me

He leads me by the proper path

I know He will not leave me

I take content, what He has sent

His hand can turn my griefs away

And patiently I wait His day…”

(Whatever My God Ordains Is Right, Mark & Stephen Altrogge, Sovereign Grace)

Answers In Time

The call came early this morning.  Chase’s brain and spine look wonderful, except for the area that’s being watched in the initial tumor bed…

The bad news is that the small, cyst-like areas have grown again.

The good news is that the growths have maintained their cyst-like quality and at this time, the consensus is that they pose no threat and are consistent with damage, or “effects”, from Chase’s radiation days.

This is great news, but at the same time, it’s hard to hear on some level because we find ourselves in a state of distrust, not towards our doctors, but rather, towards an aggressive, malignant disease.  We find ourselves asking how, short of a pathology report, how can they be sure this isn’t ATRT laying dormant and waiting to explode into tumor?

For now, the full answers unfold with time alone, and so, we find ourselves deeply, purposefully thankful for a stable report, another scan reprieve of three or four months, and no known cancer in this moment.

Thank you for all your encouragement, love and prayers this week.

-MbM-

Chase during sedation, pre-MRI yesterday morning

Chase during sedation, pre-MRI yesterday morning

Are You Married?

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The sedation doctor bent over the bed to peer into Chase’s mouth and while he complied with an open mouth, the doctor made conversation: “So, are you married?  Do you have a job?”, to which Chase giggled and exclaimed “Ew, gross, no!” to the first, and “Yes, my job is to make my bed and clean my room.” to the second – and oh, how I wish I had that work promise in writing.

No MRI news to date, and none expected at the moment, but a great answer to prayer in this moment is that Chase did very well under sedation and that the procedure itself went well.

It will take anywhere from a few hours to a few days for the full effect of the sedation drugs to wear off and in the meantime, somewhat sedated Chase is making things interesting.  He’s unsteady on his feet and when I tell him to turn left and he slowly and deliberately responds: “No Mom, I’m going to turn left.”  :)

He was so proud of himself for doing well with the scan as well as the needle in his arm for labs and IV fluids.  We are so thankful for the good day even as we continue to wait under the shadow of unknown results.

Thank you again for walking this road with us…

Moment by moment.

 

 

Of Bravery, and Baseballs, and Laying “In The Tube”…

Standing in front of two doors…

On the edge of a cliff…

Holding life with open hands… all these metaphors and so many more come to mind (and have come to life on these pages) as I consider another MRI in the morning.

By my very rough count, Chase has lay in “the tube” and been scanned over 20 times, and on the one hand, preparing for the experience feels almost as routine as running to the store for milk, and on the other… well, really, really not routine.

Chase stayed home from church today in order to protect him from any germs that might interfere with sedation tomorrow and for a minute, we sat in the sun on the back porch with the blooming trees all around us and I asked him what to write and what he’d want to say.  He shrugged and said “I don’t need to say anything.  You can say it, Mom.  Just write about cancer and my baseball and the MRI – that I would be brave and not be afraid.”  So there it is… Please pray for Chase to be brave and not be afraid as he goes in tomorrow.

Despite all the experience, tomorrow will still be a first.  At the suggestion of his doctors, to reduce stress and the hours spent with no food or water, we are going to attempt an MRI at an outpatient facility (his first full scan not done in the hospital), using sedation instead of general anesthesia.  Our hope and prayer is that his little body will take to the new medicines well and that he’ll be able to fall into a deep sleep and stay there for upwards of two hours.  We were told that there are only a small percentage of children who don’t take well to the procedure and need to be transferred back to the main hospital for future scans, but as ATRT parents, we eat “small percentage” for breakfast every morning, so it really didn’t come across quite as comforting as we know the nurse meant it to be.  Also, it’s Chase… :)

So, as always, we go forward …

Moment by moment.

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

"Make a wish, Darcy, please make a wish!!"

“Make a wish, Darcy, please make a wish!!”