Category Archives: Chase

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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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

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!!”

Keep Running

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Our dear friend John teaches Chase’s class at our church and is an amazing runner. He stopped by to see us and gift Chase with the first medal from his first marathon many years ago and this coming Monday, as Chase lays in the MRI machine, John will be on the ground in Boston, running the 2015 marathon. We are so proud of him and are so humbled that he does this in honor of Chase.

“There’s a cloud of witnesses, the ones who’ve run this race, and even louder than my fears they’re crying; ‘Warrior, lift your face, and keep running, keep runnin’, don’t lose hope, don’t you give up now, don’t turn around, you’ve got to find a way to just keep reaching, keep fighting, the pain does not compare to the reward that will be yours, that waits in store for those who just keep running.” A Pilgrim’s Progress, Matt Papa

 

The State of Chase: A Little March Madness

As many of you know, after months of every six-week-scans, Chase was granted a three month reprieve which will be up in a few short weeks.  March has been an amazing, breath-taking month and we’ve been honored to be a part of several St. Baldrick’s and Lurie events already this year.

"Take a survivor picture of me, Mom!"

“Take a survivor picture of me, Mom!”

One of our favorite events has been visiting schools in our district for shave events.  Watching children donate their hair for other children takes my breath away.  There is no guile, just love and caring with the greatest commitment.  The first school we visited, Chase had determined to say something but in the face of the entire student body, staff, and parents, he decided to stay quiet.  I can’t blame him – I was a little terrified too.  However, last week, at our final event for March, he opted to speak and in a gym full of children, staff, and parents, he found words about St. Baldrick’s being a special thing…and then, simply, this tiny 5-year-old with a microphone in his hands voiced the best words: “Thank you.

Talking about St. Baldrick's at Madison Elementary

Talking about St. Baldrick’s at Madison Elementary

In some ways, March has really been a month about hair.  We’ve had the shaving events including Aidan’s shaving, and for the first time, Chase spoke about not having his.  It was “crazy hair night” in the kid’s church programs and while Aid’s full, thick hair easily stood on end with a little gel and styling, when Chase asked for the same style, he expected the same look, and instead, he looked a little like Baby Jack-Jack from the Incredibles – with a single tuft of hair off the crown of his head.  We all thought he looked awesome.  We all thought he knew.  It wasn’t until that night, as he looked in the mirror, that he fully voiced and realized his difference in this area.  “I want my hair to look like Aidan’s!  It doesn’t work! [he smacked his head with the palm of his hand] It’s just my same, stupid baseball. Don’t talk to me about it right now. I’m very angry.”  This was the first time Bob and I have ever heard Chase voice discontent with his differences.  It was both heartbreaking and impactful for us as moments like this one reiterate that we made huge medical decisions which will never stop greatly effecting his daily life.  

It was during these same weeks that I received an email from Chase’s school about hair.  Kids in his class were beginning to ask more questions about Chase and why he didn’t have hair like them, so, last week, we went into the school with a program designed to educate and answer questions and the woman read a story about a boy named Billy, and she brought a bald doll on whom all the children practiced cleaning central lines, and then Chase got up and showed his class some pictures – pictures you all know by heart – of Dr. Lulla and surgery days and hospital days, and he explained each one in his own way and the kids sat and listened.  And then, because they’re five and they’re wonderful, they fixated on Chase getting to do special things in the hospital and when we reminded them that hospitals try and make it special because Chase couldn’t do “normal” things like swim and be outside when he was having chemo, it reminded them how much they all like to swim and be outside and though it turned out a little like nailing jello to a wall, it was precious and real because Chase stood up in front of them and talked about a part of who he was and is.  

Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase's class about cancer life.

Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase’s class about cancer life.

Courtesy of Lurie Children’s and LaSalle Bank, March also brought another first for Chase: a Chicago Bulls game.  I wish you all could have been there the minute he stepped into the crowd on the edge of the box and took in the fullness as a visiting choir sang the national anthem, sound and song echoing off the rafters as the lights glowed around.  He’s learned how to wear a hat to cover his ears which greatly decreases his over-stimulation and helps him enjoy large, loud moments and his eyes were huge and awe-filled as he turned and screamed “This is awesome!”.

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It was also during this time that Chase lost a cancer friend.  They only met a handful of times, but Rusty and his family have always gone before us and encouraged us so.  And that losing season brought up lots of questions for him again.  One afternoon, the day before Rusty passed, Chase “composed” a message to him on the computer and then we sat on the couch and talked and he asked if he was going to die soon too because he has cancer and chemo and talks to Dr. Lulla like Rusty.  Some day, I will write about this conversation, but today, I can’t.  There were lots of tears that day – for us, for Rusty, for this broken world – but there was also joy in talking through this not being the end.  To be able to speak about these things was bittersweet and we count ourselves beyond blessed to have known Rusty and been encouraged by his story.

Early morning checking in on Rusty via Facebook

Early morning checking in on Rusty via Facebook

Finally, this March time has been an up and down time with some anxiety as Chase has had some health issues that we’ve been monitoring.  He’s complained of headaches and frequent stomach aches, failed his eye exam, and then, started tripping and falling quite a bit.  It became apparent within a few days that he had an issue with his ear, and while that has now cleared up and he seems more steady most of the time, we continue to watch his sleep patterns, appetite, and speech, as he hasn’t been himself at times – to the point of effecting his school schedule.  All of these symptoms can be normal, or they can be very not normal.  Which is both comforting and deeply terrifying because we never know when he can’t remember his birthday if it’s because he’s five or because he has cancer.  We know that the MRI is soon and that if it’s a cancer concern, his symptoms will become more apparent.  And so, as always, we wait…one part scoffing at how silly and over-concerned we feel, and one part with the silent “what if?” question. 

But for today, in this moment, he’s fine.  In fact, I recently found him hiding under the desk in the living room with  his father’s electric razor trying to give himself an even more bald head.  So, we close this crazy month and look forward to more Spring and the weekend celebration that life is ours and death has no hold, and we take each breathing day…

…moment by moment.

Both Baldy

The shave was less than a week away when he committed and said “one hundred“.  

The goal was met within minutes and when I asked him what came next, he smiled big and said “one thousand”.  He asked and you gave him over three thousand.  

His eyes got huge with the big numbers he’s still learning in school and when I asked him what was next, this oldest boy of mine, he looked at his bald brother and they smiled huge and said “FIVE thousand!”  

And you know what you did?  You gave him almost exactly DOUBLE that!  

In under a week, you read and reacted and said this is the price of brotherly love on this, a six-year-old head…nearly TEN THOUSAND DOLLARS.  

So, today, as he sat like a man and was covered in the green apron, they pulled up a bar stool for Chase and they took the clippers to his head because this is how he shows LOVE.  

And his cancer brother went around the house all day today clapping and cheering sing-song that “Now we’ll both be baldy boys!”

“This is what I want to do… Help get medicines to help the doctors so kids like Chase don’t die.”  – Aidan

THANK YOU.

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*At the time the clippers were taken to his head, Aidan’s fundraising page read $9,510.00*

“…Now I Am A Little Like Chase.”

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12 months and 5 days...  That’s all the time between them; my first boy and his surprise brother.

Through the years they’ve been mortal enemies and best friends and sometimes both within a matter of seconds.  They played cars together and sword-fought across the whole house and back and they used to splash in the rain on the tiny condo porch and squeal in delight.

About 2 months before Chase was diagnosed

About 2 months before Chase was diagnosed

And one morning, while he lay in his bed, Aidan watched us surround his brother and carry him out.  He lay in the dark of the room as emergency lights reflected through the closed blinds – flashing red on the walls and ceiling – and he looked out into the dim hall and saw shadowy figures in navy and heard the click of a metal gurney carried across the threshold.  He watched his mother cradle his best friend brother with eyes closed and a mask over his face and he heard the words:“You need to stay in your bed, Grammie is here, I love you so much and we will see you soon, okay?”  ..and with that, the life of my first-born boy changed forever.

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Helping with blood draws in clinic

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Making Chase smile on hospital days

The sword-fighting and cars never stopped, but now it was only occasionally around the times his brother was out of the hospital.  And while he could go outside and run or swim with his sister; his brother, whose head was now ugly and puckered with stitches couldn’t be out in the sun or water with him.  And their play had to gentle around IV bags, careful as his ever energetic brother tired in minutes, and metered around blood draws and medicines…for which he’d stand by the couch and hold out his hand and say words like “Chase, it’s okay.  I’m here if you need me.  Here’s my hand… you can hold it if it makes you feel better.”

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Helping Chase move with the IV bag

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Cheering Chase on during radiation days

And when he had his own tonsil surgery the week after they opened his brother’s brain, he sat contentedly in recovery and made no sound at the needles or cords because “…Now I am a little like Chase.”

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This boy has grown up on the sound of his brother’s screams and the sight of his brother’s scars and blood.  And in some ways he’s 6 and in other ways he’s 60 because he knows more of the world and suffering than you should know when you’re little.

Learning to play around an IV bag

Learning to play around an IV bag

So, this week he told me that he’s growing out his hair to shave it for his brother.  He wants to be bald for a minute with his brother.  And when he had to write on the St. Baldrick’s website and say why he was going to shave his head, these were his words: “I’m shaving my head for my brother Chase because he’s my brother and I like him and because he’s my best friend and because he’s a very kind boy.”  And if I know my Aidan, he’ll sit in the chair, totally bald and calm because “…now I am a little like Chase.”

12 months and 5 days and sometimes there are no other words.

Moment by moment.

To go to Aidan’s St. Baldrick’s page, click here.