Monthly Archives: March 2015

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*