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.
*At the time the clippers were taken to his head, Aidan’s fundraising page read $9,510.00*
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
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.
Helping with blood draws in clinicMaking 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.”
Helping Chase move with the IV bagCheering 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.”
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
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.
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…
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…
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.
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.
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…
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
The sun is only hinting pink when I feel another presence on the edge of the living room. This is what he does, my early-rising boy… He wakes before it’s light, tip-toes out to wherever a parent can be found, and stands quietly, thumb in mouth, waiting for someone to see him and call him into the light.
Still rumpled and rosy from sleep, mismatched in his Lightning McQueen bottoms and a shirt that announces “I fightcancer. What’s yoursuperpower?”, he jumps onto the couch and snuggles close. His talk turns to the subject that has been plaguing him for about a week now: the upcoming MRI.
The questions come as they do every day; several times a day: …When is my MRI? Will there be ‘beeping’? Will I have a needle? Can I eat? Who will go with me? Will you come back to me?… They come with heartbreaking regularity and the answers are always the same. In a life that’s anything but predictable, he can at least rely on the same answers to these small questions that are so very big to him.
In a day, he’ll wait in pre-op for almost two hours after having gone nearly half a day without food or drink. They’ll lull him and then hold a mask over his face while he lays on the threshold of the machine with no parents in sight to say “It’s okay, sweet boy.” And while he sleeps, they’ll put a needle in his arm to keep him hydrated and inject dyes and he’ll be in the machine for nearly two hours – the only blessing: he’ll be mercifully unconscious.
You hear from me on this subject early and often, and in the last part of the last year, it was often-er than not. My words hardly change…we can’t, we must, we wonder, we shouldn’t, God is good. Always.
So today, hear Chase. He’s about 24 hours away from a big MRI and he’s scared. He also wasn’t sold on the idea of a video until I promised him that he could hold his father’s tape measure. This is what the early morning and late nights look like…the twisting mouth, the working to remember words, the thinking about mosquito bite scars on top of his skin rather than the potential of cancer growing under it. He’s part boy, part wise far beyond his years, part broken by his treatment and tumor…and he’s all Chase.
Moment by moment.
*Note: His last words are “I want Mrs. Schneider to pray for me.” That is the name of a dear friend who -because Bob needs to work tomorrow- will be accompanying us to the hospital so that I don’t have to be alone on MRI day. Chase knows that while we can’t be with him, Janet and I will be praying for him in the waiting room while he’s in the MRI.
