“This makes it feel like you don’t even have anything wrong with you.” — Taylor, 19, undergoing an infusion treatment at Children’s while playing on the new XBOX just installed in her station.
Taylor has been coming to Children’s for eight years for treatment, and each one lasts hours and hours. Before yesterday, she did not have gaming to occupy herself while sitting in a treatment chair in the Infusion/Dialysis unit. But this beautiful, soccer-playing young woman saw we had soccer games like FIFA in the box, and her eyes lit up and she got busy playing.
Now, Taylor’s words to KDKA, “This makes it feel like you don’t even have anything wrong with you,” is basically the entire idea behind Make Room for Kids and is the very foundation of why we continue to raise funds and operate … our belief, our strong belief that gaming takes young patients’ minds off of scary times and sometimes painful or long treatments.
To hear a patient voice that exact thing, completely unprompted and unscripted, well, it was something. I’ll never forget that ever. She validated with one statement everything we’ve been doing for the past six years with Make Room for Kids. You can watch the video of Taylor speaking to KDKA’s Heather Abraham and make note of how Heather’s face completely changes when Taylor utters that sentence. It’s powerful.
Now, let me walk you through the day so you can see where your donations went!
Arrival. 8:55 on the dot, two SUVs slowly pull up to the main entrance loaded with secret service –
Kidding. With boxes and boxes and boxes. And already there and waiting are lots of blue-shirted Microsoft employees, Mario Lemieux Foundation staff and hospital staff.
Here’s the mastermind of logistics, Microsoft’s Luke Sossi, who has basically run the “HOW THE HELL ARE WE GOING TO MAKE THIS HAPPEN” part of Make Room for Kids since the first year.
Assembled, time for a quick team picture!
And then Luke says, “Go to your places!” This year, the team split into two units because we had our biggest undertaking yet. Installing a new unit, maintenance on all units previously installed, and then pulling out and refurbishing/upgrading every XBOX in the transplant unit.
I head with Luke and crew to the fourth floor where the Infusion/Dialysis unit is and there they install the first XBOX in Taylor’s station.
She sweetly says thank you as if that’s the end, and I’m all, “Well, how about a game? Do you play?”
She mentions she plays Playstation with her brother, so she can pick up gaming pretty quickly. I grab the box of games and movies we designated for that unit. She saw soccer, eyes lit up, and that was that.
Across from Taylor, we have 15-year-old Haley. Who wants to do boring homework now that the XBOX is there? Not Haley.
She was playing some sort of racing game, I think. She was there with her “favorite uncle” who brought her in and sat with her during her treatment. Big Penguins fans, her family.
After installing all the XBOXs in that unit and leaving them with their games, controllers, and more, we headed up to the seventh floor where the staging area had been set up, and here’s how that room looked.
What is all this madness, you ask? This is the Microsoft team cleaning, refurbishing, and upgrading every original XBOX that was installed in the Transplant Unit five years ago, our first year of Make Room for Kids. A few XBOXs went on to replace broken or missing units and the rest were put in storage at the hospital so Child Life staff has backups should any unit break or need serviced. No kids in our units are going without gaming for long now that we have this backup refurbished stash.
They then installed brand new XBOXs in every transplant room, therefore, we did two COMPLETE units yesterday. Infusion/Dialysis and Transfusion. We also put XBOXs in the Cardiac Step Down unit which was relocated last year after our heart unit install.
Drew and Karen from the Mario Lemieux Foundation. Keeping an eye on that organized chaos.
In the transplant unit, we met Case, who isn’t quite two yet. While his XBOX was being replaced, Case wasn’t much feeling up to having visitors and certainly not having a camera on him. Until I asked him if he maybe wanted a game, and he was a changed child IMMEDIATELY. I ran to grab a few games he might like, thinking to give him one, and he grabbed all three in quick succession, squealing as he looked at each new title.
And then I said, “I don’t suppose you like Paw Patrol,” because he’s at the exact age for that. And he nearly exploded. Nancy Angus, executive director of the Mario Lemieux Foundation ran to get the DVD from the box and he was basically on Cloud 9.
His sweet mother was attempting to help him get his new stuff organized and he was all, “PAW PATROL PAW PATROL PUT ON PAW PATROL MOMMMMM.”
Further down the hall, this sweet girl who asked for a racing game and was thrilled we had a new Sonic the Hedgehog game in the box.
Here the Microsoft employee is showing her how to switch the TV over to the XBOX.
A little further down the hall, this adorable kiddo, watching the Microsoft employees install the new XBOX.
Smiles for days.
Back in the staging room, they’re still working furiously to upgrade so many old XBOXs, while Nancy Angus and I work on distributing the new games and movies to all the other units we’ve already outfitted.
Hospital staff chatting with Nancy Angus as we get closer to completion.
Back in the patient rooms, another happy kid, Noah!
Here’s Luke with hospital employee Frank. Frank works for months and months, often coming in extra early, to prepare rooms for installations. He’s the man. The man.
Finally, all XBOXs are installed, old are upgraded and refurbished, games, movies, cameras, music CDs and other requested goodies are distributed, all units received an extra stash of XBOX controllers, the Infusion unit received four Surface tablets, and we are done and ready to let the kids play … and forget for a bit.
It was a fantastic day that saw us reaching many areas of the building and that meant getting to see many many smiles.
Here’s the Lemieux Foundation’s photo gallery.
And here’s a hug from me to you for donating.
Group hug, guys.
Troysus managed to remain a shining diamond of decency and goodness in the increasingly putrid pile of dog crap that is the NFL. Respect.
— Virginia Montanez (@JanePitt) April 10, 2015
I am writing so many pieces right now.
My annual Burghy Mother’s Day Gift Guide for the magazine, so you can buy your mother something meaningful and local. My annual Pittsburgh Magazine City Guide column in which I will astound you with even more things you probably didn’t know about our fair city. A post on the new Clemente Bridge bike lane, how some people aren’t happy about it, and what Bill Peduto’s plans for it are. My regular magazine column, of which a topic I have not yet determined because I haven’t drank enough wine yet. I’ve got a lot of writing balls in the air, people!
But then Troy Polamalu was like, “Slow your roll, girl. I have news.”
And you know, it’s not the most shocking news. I think you’d agree that Troy’s exit from the NFL wasn’t a Bugatti careening onto the exit ramp at 80 miles an hour, but was rather an Amish buggy with two elderly horses, slowly rolling off the highway, enjoying the scenery as it passed. With his increasing age and diminishing physical health, we knew it was coming. The gray hairs foretold it. There’s no surprise. No abrupt ending that leaves us scratching our heads, I’m looking at you, Gillian Flynn.
I am 90% disenchanted with the National Football League and you know this because I wrote about it. I quit it. I stopped watching the games. Stopped supporting with my dollars. I can’t support an organization that seems to be allowing bad men to beat their wives and good men to destroy their precious brains.
The NFL became a bad taste in my mouth. The fly in my wine (which I would still drink because wine is delicious). The rain on my wedding day, Alanis. It became, to me, a money-worshipping, Alpha Male-encouraging, greedy, evil empire and I had to walk away from it and God did it feel good.
But within that muck, stood Troy Polamalu. A man who managed to prove that the NFL and football do not automatically destroy good and decency. That a strong enough man can rise above it and stay there for an entire career. Who can put family and God and good before money and power and vice.
We establish long ago that “The Steeler Way” is a myth, but somehow, someway, Troy Polamalu is mythical enough to live it and make it real. Every story I’ve ever heard about Troy has been uplifting, which is why I dubbed him Troysus many many years ago.
Football’s Jesus. The man who literally never stopped praying. And I feel comfortable using the word literally there, because his very essence oozes prayerfulness. Quietness. Solitude. Peace. Even when delivering a crushing blow to an opponent.
I’ve heard about his quiet visits to the homeless. His visits to sick children at the hospital without ever telling another soul. His devotion to his family. There is no cloud of questionable judgment hanging over his magnificent head of hair, and there never was. Just pure sunshine.
I think Steeler Nation loves Troy for his contributions to the physicality of the sport — to the wins. But I think he will be long remembered more for the kind of person he is. For his larger than life aura of I RISE ABOVE IT ALL ALWAYS.
Call him the Jesus of the Steelers. The Mister Rogers of the Steelers. The Superman of the Steelers. Call him Troysus. Call him what you like, and then strive to be just a little more like him.
Then and only then will the Steeler Way stop being a myth and become something this city can truly hold up and be proud of.
If you haven’t received an email from me yet with the subject line of WINNER WINNER CHICKEN DINNER YOU LUCKY DUCK, then sadly, no, you did not win any of the great Make Room for Kids prizes.
You’ll notice we sit $500 away from the goal, but not really. You see, the kiddos in the cancer, transplant, infusion, NICU, adolescent medicine, etc. sent us lists of new games and movies they wanted. I posted all of them to an Amazon wish list, let my Twitter and Facebook followers know, and in 18 hours, $2,000 worth of titles were purchased and on their way to Mario Lemieux Foundation offices. Before I ever had a chance to mention the wish list here.
So, actually, we are at $11,500 raised from my readers, therefore, I gave the prizes away.
However, if it is just driving you bonkers that the ticker isn’t at the top, well, I’m not going to throw myself on your keyboard to stop you from donating out of the goodness of your big giant Burgh heart. Funds will be welcomed and they will be used to make sick kids’ hospital stays a little brighter.
Winners as selected by Random.org:
– The winner of the Pirates Home Opener tickets was a reader named Alan O. When I emailed him the fantastic CHICKEN DINNER news, he responded that unfortunately, he’s out of the state until May. He wondered if we could find someone deserving to use the tickets, so I reached out to Genre’s Kids With Cancer Fund, and the organization is identifying a local childhood cancer family that would enjoy attending the game. Perfect.
– Donald M. won the amazing Dave DiCello metal print. Dave is mailing or has already mailed him his prize directly.
– MaryAnne H. won the Pens Charity Gift Bag. I’m mailing it tomorrow.
– Randy G. won the autographed Sid Crosby jersey. I mailed it today and sent him the tracking number.
– Jessica M. won a previously un-featured prize, this fantastic print from local photographer Jason Furda who reached out to offer the print up for a giveaway.
Man. Love that. Lucky girl. Check his work out here. Really stunning stuff. Go to his site and find “Contemplating the Rubber Duck,” another Mister Rogers statue print, and feel the feels.
Jason is mailing or has already mailed the print directly.
– Katie S. won the prize pack from the Penguins with the autographed Sid print, the autographed Hornqvist jersey, the Letang stick, and the Pens/Flyers tickets. I met Katie and personally handed her prize to her, because how do you even mail a hockey stick, Internet?
– Rose F. and Lesley P. won the Pirates gift bags full of bobbleheads and other goodies. I’m also mailing those tomorrow.
– And finally! Wild Bill Wichrowski from Deadliest Catch sent me a great box full of good stuff from his store in Florida that just arrived. I’ll pick a winner for that tonight.
Thank you to all who donated here or via the wish list. It honestly moved me to read down the list of hundreds of names, some familiar, some not, and see such outpouring of generosity for our city’s sick children who will relish this extra distraction from pain and treatment.
Mario Lemieux Foundation, Microsoft and I will install this month (well, they install while I watch and take pictures and chat with little kiddos) and I will be sure to share all the fantastic details with you.
I would say that every day is a gift, but I don’t actually agree with that. I will say that every day is a chance to love, and my best guess is that love is what it’s all about.
I can honestly say that there is no story or person I’ve written about in my ten years of blogging that has stuck with me more than Amy’s.
I think about her at least once … every single day. Maybe while driving. Or as I pray. Or as I lay in bed at night with my thoughts. Brushing my teeth. Almost always as I tuck my children in or watch them climb onto their school buses. She flits across my brain and leaves a ripple of emotion in her wake that will reverberate until the next time.
Perhaps it’s because I’m a mom too. Perhaps because she’s around my age. Like me, she has a son and daughter (yes, HAS. Losing children doesn’t ever stop you from HAVING those children. You will always HAVE them.). Perhaps because I’ve met her, dined with her, hugged her.
Sometimes I have to stop my brain. If I imagine what happened to her happening to me, the hypothetical pain cuts my air off. Suffocates me. My heart tightens. A sense of panic tries to settle in and I have to literally shake my head and move away from those thoughts.
I’ve learned about love, loss, and strength from Amy’s story.
It has been a long time since she’s written — more than a year, but nearing the 6th anniversary of her children’s sudden deaths, it makes sense that she’s found need of an outlet for some of her emotions. Her latest post is a lesson in perspective, and such an important one.
It’s a lesson in understanding that the burdens we bear are only as heavy as the weight we’ve assigned to them. So if you’re feeling overwhelmed, as we all are at times, with a big pile of the little stuff … Little problems. Inconveniences. First-world problems. Relationship struggles. Job issues. Family dynamics. Drama. Whatever burdens you bear can be greatly lessened with a little bit of perspective. A little step back and look at the grand scheme. The big picture. What’s REALLY important.
And I think that’s the most important thing Amy’s story has taught me. Perspective. When things start to add up and get heavy, I remember Amy, and my burden is lightened.
I love that.
I hate that.
I hate that she experienced something that allowed me to learn it. I hate that I’ve gained something from her because there are one billion other ways I’d rather learn that lesson, than from a beautiful woman who lost her children.
Pittsburghers support Pittsburghers, so please have a read and leave her a small comment of support and love, especially as we near April 6.
First, I’m very angry with myself.
I went back to read my last post about the flu virus where I was talking about how you simultaneously fear and want to French-kiss death, and I didn’t say, “Like if Ryan Gosling was portraying Hannibal Lecter.”
For shame. Flu virus just sucked the good writing out of me for a while.
Moving on, let’s talk about all those bonkers people in Mt. Lebanon who are still collectively losing their elite elitist shit over the deer cull AKA OPERATION BAMBI EXECUTION.
Not only did someone spray urine on the deer bait, but the residents are also sitting at their computer keyboards just …
LOSING THEIR SHIT.
The Post Gazette published an article that the first deer had been culled, and yes, Mt. Lebanon residents on both sides of the issue went BALLISTIC in the comments. I mean, by their nature, comment sections are train wrecks. Add animal-killing to the mix and glory glory hallelujah happens. And if you think these people won’t find a way to work abortion or the holocaust into the comments, you are very very wrong (I’m not posting the holocaust stuff because no).
Here’s Beth, who warns your next life might find you ruled by pigs.
Here’s Francis, realizing the next logical step is to CULL THE HUMAN HERD.
Donna needs to take the scotch tape off of her caps lock key.
Sandy is up on the grassy knoll calling out the MONEY HUNGRY KILLERS. (If Money Hungry Killers isn’t a goth rock band name, I don’t want to live on this planet anymore.) And then Donna shows up again all THE KARMA BOOMERANG IS GOING TO KILL ALL OF THESE PEOPLE AND THEIR CHILDREN.
Here’s Pitts Burgh thinking about throwing dead dear in the Elite Elitist Gardeners’ gardens.
Oh, God. Now Todd has gone and done it.
P.S. Ryan Gosling wants you to donate $5 to sick children. He told me so in my fever dream.