Tag Archives: St. Baldrick’s

5:31

Five hours and thirty-one minutes.

For five hours and thirty-one minutes he pounded the pavement, putting his feet to his purpose. And for all those hours and all those miles, past crowds, houses, and fields in the November sun, he ran holding a sign in the air – “Chase Away Cancer”.

And he told me tonight, though he kept his headphones in his ears, he never needed them as he talked to the people around him. People who came alongside him to talk about his sign because they were survivors, neighbors, family, friends – each one a person whose life had been touched by cancer. They saw him identifying with it in his sign and they identified with him as they all ran together.

And this morning, as he geared up and prepared to walk out the door, Chase and his fuzzy head stumbled down the stairs before the sun was up, urging him to run fast, not slow down, and “Run like me, Dad”. And then Chase covered his fuzzy head against the frost and cold and stepped out along the route to cheer the runners on, holding a sign alongside his crazy, cheering grandfather, proclaiming that “sweat is liquid awesome”.

Five hours and thirty-one minutes later, Bob crossed the finish line for Chase and fighters and parents and friends everywhere. And he wasn’t alone. You put your hearts into this race with him, and today, nearly $5,000 dollars went to St. Baldrick’s in their tireless efforts to chase cancer far, far, away.

THANK YOU.

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Chase’s Story [VIDEO]

Have you ever seen this video of Chase?

If not, I highly recommend it.  And even if so, feel free to watch it again…  We have been so blessed to partner with the St. Baldrick’s Foundation this year and are continually thankful for the platform they give us to share Chase’s story with so many.

-MbM-

[Our deepest gratitude to the incomparable Matthew Lackey for his mad, crazy video skills.  Also, a huge thank you to both Jane Hoppen and Kristen Thies for all they did to put together the finished product and the time spent filming it.]

Of Breathing, Growing, And Being An Ambassador

Sometimes Chase remembers that things change as he grows and sometimes he doesn’t.  The last time he had a continuous EEG (the process of monitoring the working of his brain for hours on end), he was newly 4, six months off chemo, and his heart and body were both still deeply hospital weary.  He had to be wrapped and held and he screamed the whole time as the wires and goo covered his head, so when I told him on Monday that the time was coming again, he slumped down on the couch next to me.  “Mom, stop talking.  Please don’t say anything else.  I need to breathe.  No more talking… I need to breathe in and breathe out right now.”  And I sat half laughing and half broken that he’s 5 and yet he’s 107 for all of his experience.  

The awkward "can't-climb-into-the-hospital-bed-with-you" snuggle

The awkward “can’t-climb-into-the-hospital-bed-with-you” snuggle

In preparation, we wandered through Target last night and found a new movie and some popcorn because seizures can happen when you go from sleeping to waking and so he had to be able to sleep during the test, and as the kids sat on the old, blue leather couches and munched around giggles at WALL-E, there was another July EEG night on my heart.  One when Darcy and Aidan were still too young to stay up terribly late and Bob and I took turns napping and walking a two-year-old Chase around the block and at 10:30, when I simply couldn’t stand anymore Thomas the Tank Engine and decided to put him to bed, he lost his balance and fell, and my stomach turned, but many things can cause a fall and so we went to bed anyway…never knowing that it was less than 48 hours til we’d sleep in an ICU under the shadow of imminent surgery and tragic diagnosis.  I always think of that night come each July and it was my turn to breathe in and breathe out and remember that by the grace of God, that night wasn’t a minute past, but nearly three years ago.  

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Being perfectly still

This movie night lasted until 11:00 and the EEG day started at 5:00 and in moments like this, grace and coffee are my best friends.  By a mile down the road, it was time to find the nearest bathroom just because that’s what happens with 5-year-olds, and as we sat on the Eisenhower in the long lines of traffic, as soon as he saw the top of the Willis Tower, Chase pulled out his iPad and turned on 10,000 Reasons, because sighting the tower means he’s almost there.  Three years have nearly passed and this is still how he prepares for a hospital day.

Within minutes, we were there in the familiar rooms again and then came the moment he knew things had changed for he sat completely still while they put 21 brightly colored electrodes all over his skull and the only time he ever got cross was when I tried to make him laugh. IMG_1250  And I got to hold his hand and not hold him still.

Chase never relinquishes a fight and it took him until 5 hours into the test to fall asleep and that was 5…long…hours… of sitting in a bed with virtually no radius of movement unless a bathroom was absolutely necessary.

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Sleep finally wins

 

When the test was done, having mercifully lasted only 6.5 hours, he pulled some St. Baldrick’s brochures out of his pack.  They had his picture inside, his and Dr. Lulla’s, and to anyone who would stop, he gave a brochure and said “I’m an ambassador.”  And even though he doesn’t always give Dr. Lulla the time of day during clinic visits, to any and all who would listen, he would explain and point, saying “This is Dr. Lulla and he’s my favorite doctor in the whole world.”  He even stopped a security guard and somehow managed to encourage him to shave his head next year, and it was a precious moment of conversation and meeting, because if I’ve said it once, I’ve said it here a dozen times…this is how Chase rolls.  And I wish you could have seen the tall security guard fold down and give tiny Chase a big hug.  Those are the good moments to breathe in.

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Chase and his “favorite doctor in the whole world”

And now Chase has learned that things change as he grows and what was hard a year ago wasn’t very hard at all anymore, though the sitting still and his mom trying to make him laugh at inopportune moments will probably remain trials for many years to come.  

For now we await results.  No matter what comes of this, we’ll breathe in, breathe out, and take it…

Moment by moment.

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.

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*

“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.