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.

A Far Green Country

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“End?  No, the journey doesn’t end here.  Death is just another path, one that we all must take.  The grey rain-curtain of this world rolls back, and all turns to silver glass, and then you see it… White shores, and beyond, a far green country under a swift sunrise.” 

Tolkien

-MbM-

Going Before

Her face literally glowed with her peaceful smile as she looked up at me.  It was the first week in the radiation center in the late Fall of 2012 and I’d fallen into treatment routine, into exhaustion, and honestly, into a sense of self-pity that Chase’s diagnosis was one of the worst I’d heard of at that time.

And then I met this woman.  She was petite, energetic, had the biggest smile, and was waiting for her son.  She sat folded into a kid’s chair in the play room while her older daughter danced across the room doing math facts on the white board and checking in to make sure she got it right.  As the blond girl and the math facts moved around us, this woman with the peaceful smile would tell me that her son had a cancer with no cure.  They knew it from the beginning: every treatment was but a buyer of time.  And as I worked to accept the words that came from her mouth, she spoke of knowing True Peace and making the most of what they were given.  In her own words, describing the same moment by moment refrain that I was coming to know.  She’d gone before me, into harder places, and her wisdom held me up in those first weeks and new treatments.

Within a month, I’d stand in the radiation center and cheer on her darling son as he graduated.  Bald and emaciated with his “radiation tan”, he got his coin and his certificate and he was done.  As I watched him stand there, I was so encouraged that Chase would soon be done.  Rusty had gone before us that way and seemed to say “Hey, this can be done.

And then the good news came as Chase finished radiation the following month.  A reprieve had been granted and Rusty’s health was strong.

Our families saw each other rarely even as we shared some doctors and hospital floors.  But this is the strange bonding of cancer.  People may be different as night and day or live in far away places and yet, in unusual ways, we become brothers, sisters and neighbors because of the halls of a children’s oncology ward.  One time, while Chase lay too weak to rise and the central line bled out (again), Rusty was being prepared for hearing assistance and he made a special trip upstairs with a picture he’d colored just to cheer Chase up.  He stood by Chase’s bed and as he had done at radiation, he seemed to go before and say “Hey, this can be done”.  His hair was back and his color was good and I hoped Chase would look like that some day soon.

Time passed as Chase would scan and clinic and then Rusty would scan and clinic and over and over again, the hope and faith of this family rushed over us in encouragement like water on parched ground.  They went before us and proved God faithful in so many ways.

Then the summer came and with it, news.  The cancer was back for Rusty.  We were all together at a hospital function and it was beautiful.  But at times like that, there are no words.

Then the holidays came and the news of hospice came and we held our breath – not now, please not now at this season – as if praying this would make any other time less awful.  Yet Rusty pushed back and lived greater and bigger still.  He walked when they said no more and he ran and he played and his joy and strength – the whole family’s joy and strength – was larger than life.  And one frozen winter Sunday, we watched our computer screens in awe, tears streaming down our faces as the video showed his father gently lifting him into the water and laying him in under the words “I baptize you in the name of the Father, the son, Jesus, and the Holy Spirit”.  He publicly identified with The One who has always gone before.

And now, we’ve read that the time is near.  We’ve read that his body grows weary, but we’ve also heard that he’s ready.  And soon, he’ll go before us yet again…

Please pray for this family.

“Man, I cannot wait to see the baseball field. I bet I can hit a home run on heaven’s field.” Rusty, age 7

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.  Romans 8:38-39

-MbM-

Because who wouldn't be encouraged by the Chicago Blackhawks? - Rusty and Chase in May, 2013

Because who wouldn’t be encouraged by the Chicago Blackhawks? – Rusty and Chase in May, 2013

The Story of Three Guys

Once upon a summer time in a city of two towers, three guys named Tim, John, and Enda did well for themselves and decided to give back.  But how?

They decided to shave their heads for donations to fund research for kids with cancer and the next annual St. Patrick’s Day party was the perfect time to do it.

March 17, 2000.  17 heads.  $17,000.  This was the plan and the goal.

They proceeded and instead of reaching their goal, they’d exceed it significantly!  Instead of the 17 and 17,000, they’d end up with 19 shaved heads and $104,000.

The party was so successful that they did it again the following year and raised $140,000.

And then the Fall came and the two towers fell in their city and lives and friends were lost in that city, yet the men moved on unshaken in their goal for children.

The next year had 37 events…not 37 heads, but events, and they reached their first $1 million.  

Many who shaved were the first responders… the men and women who ran to rescue at the two towers, who run to rescue every day, the men and women who answer the panicked parent calls for the bald cancer children, the men and women who faithfully serve the country… They shaved their heads and stood for kids with cancer on military bases.  This is heart and soul worked out with a razor.  This takes the hard and sad markings of a disease and turns it from a sign of “other” to one of greatest courage and cause.

These men with this March idea would go on to become an independent foundation and begin funding Fellows – researchers who worked to better treatments and change the future for kids with disease.  More fellows and researchers every year.  More ideas. 

The shaving events continued to grow into the hundreds and the dollars into the tens of millions and the most respected in the nation gathered for a research summit to discuss priorities and goals and quality of life for the littles and in 2012, as the ambulance rushed us in and we heard “There’s a large mass…” and our lives changed forever, this now national foundation, named for the marriage of the worlds “bald” and “St. Patrick’s”, this huge thing born of an idea to give back, it reached $100 million.  

And then it gave back as it did every year…this time, the fellows included a young doctor in Chicago who was about to meet Chase and fight for his life.  And it became personal.

Chase with Dr. Lulla while in treatment

Chase with Dr. Lulla while in treatment

Each year, the foundation chooses 5 children to be their face and story.  Four living and one forever in our hearts – to represent the current truth of the fight that 1 in 5 will not survive.  Some of them shave, and some of them can’t…because they have no hair to share.  But they all step forward, look the cameras and the papers and the people right in the eyes and say “This is me.  This is who I am because of research and the need of it.”  Sometimes, the picture painted isn’t pretty, but the children are always beautiful in their struggle and their open hearts.

And so, when your social media blows up in March with donation requests, invitations, and people in bars and on stages, covered in green aprons and crying and shaving and holding loved one’s pictures and hands… This is why.  Because almost two decades ago, three guys had an idea. 

Around the world, a child is diagnosed with cancer every three minutes.  This is our March, our year, and on some level… our life.  We invite you to come with us.

I want to help, but I don’t want to shave my head.

I want to shave my head.

I want to learn more about St. Baldrick’s advocacy in Washington.

Why do they focus on pediatric cancer?

[All St. Baldrick’s history courtesy of the St. Baldrick’s website.  To read more, click here.]

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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.

 

 

“BEFORE I die…” Documentary

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08 December 2014…

Today, I watched Chun, the camera man (because yes, we have a camera crew here with us now – so much more on that some day soon) peer around the corner of the machine and flash me the “thumbs up” – Chase was okay and he was done.

Chase learns about the camera from Chun...

Chase learns about the camera from Chun…

25 February 2015…

I received the link to the first trailer this morning and it’s finally time to tell you a little bit more about this.  Chun, the camera man who so graciously let me know Chase was okay during his December MRI, was here with Richard Bakewell, the producer and visionary behind an upcoming documentary: “BEFORE I die…”.

Richard documenting Chase's first try behind the camera...

Richard documenting Chase’s first try behind the camera…

This piece is an incredible view into the world of pediatric cancer as children look to their legacy by putting together a “bucket list” and seek to give back in some way.

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To watch may be gut-wrenching, to say the least, but these children are beyond precious and their moments are being captured forever, and that’s priceless.

Richard and Chun will be joining us a few more times this year and we look forward to sharing with you as this unfolds.  Stay tuned…

-MbM-

“BEFORE I die…” teaser trailer:

For more on Richard Bakewell’s projects and “BEFORE I die…”, you can click here. 

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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Good

In pre-op with Mrs. Schneider

In pre-op with Mrs. Schneider

The doctor turned his head back to the computer screen on the desk and read out the official words from the final radiology report: “The MRI shows no evidence of new or progressive tumor.”

Let it sink in…  Good news.  The very best we could have hoped for!  These little growths, these that have so threatened for months now, these have showed themselves to almost surely be treatment effects.  What a strange cancer world we live in that where success is measured in not dying today and side effects can provoke a sigh of relief.  Oh, but what relief

In pre-op preparing for the scan: when the medicine works, it works quickly...one minute, up and playing, the next like this...

In pre-op preparing for the scan: when the medicine works, it works quickly…one minute, up and playing, the next like this…

And Chase?  He’s so funny… his hardest part was done yesterday when he woke up in post-op.  The needle was removed and he could eat and that was it.  And today, when we told him the news, he put his hands in his pockets, shrugged, and said “Oh. Good.” …as if he’d known all along.  This boy, he takes it as it comes.  And so will we.  Oh, and tonight, it comes good and great with no fresh cancer news, answered prayer, and an MRI that can wait for three whole months instead of six weeks.

Good news…  The very best we could have hoped for…

Moment by moment.

“This is the Lord‘s doing; it is marvelous in our eyes.  This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:23-24

Chase with Nurse Jo in post-op after his scan

Chase with Nurse Jo in post-op after his scan