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!!”

Nine

Somehow, it’s been nine years since the long night when her heart rate kept dropping and intervention seemed so close. 
It’s been nine years since that last minute before 7:00 and she finally entered the world so swiftly that the doctor never made it across the room and the nurse caught her before she fell. 
It’s been nine years since I first saw my Darcy Charis, my grace-child, and it’s been nine years of blessing. 
Great is His faithfulness.

-MbM-

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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*