Tag Archives: Boston Children’s Hospital

Charlie Capalbo: An Inspiring Update

For 2 years, “06880” readers have followed the saga of Charlie Capalbo. The Fairfield Ludlowe High School senior and star hockey goalie — grandson of Westport writer Ina Chadwick and Westport native Richard Epstein; son of Staples grad Jennifer Wilde Capalbo — has battled 2 separate cancers. It’s an astonishing, inspiring story. Click here to read last month’s update.

Charlie is now strong enough to respond. He sure inherited his grandmother’s writing gene. He says:

Hi friends! Finally I am feeling well enough to post an update on my own.

Two and a half weeks ago we moved from Boston Children’s Hospital to Spaulding Rehab Hospital in Charlestown. It was hard to say goodbye to all of my nurses, doctors and other care providers, but it was exciting to move to the next step in recovery.

Many of you probably saw the video of me walking out of my transplant isolation room at BCH through the bubble parade in the hallway to transfer to Spaulding. I worked really hard with my PT and OT providers at BCH for months to be able to walk that stretch.

My room at Spaulding is unreal. It has amazing views of Boston Harbor, which makes getting up early for 3 hours of therapy sessions a little easier.

Charlie Capalbo with rehab specialists at Spaulding Hospital.

On my first day here I was asked at least 5 times what my goals are. The first time I said I just wanted to be able to walk again. But as I said it I knew I wanted more. So I said “to get back to being a normal person, like my regular life.” I want to get back on the ice. I want to go back to school. I want to do everything I used to do, and I’m determined to get there as quickly and safely as possible.

My appetite is coming back. My feeding tube was pulled last week. I enjoy eating regular food again, and my doctors are working with Spaulding to wean my painkillers and many of my other meds (there are some I’ll need to stay on for a while).

In the few weeks that I’ve been at Spaulding I’ve already switched from a walker to a quad cane, to a smaller footprint quad cane, to a single point cane, and now I can walk mostly without a cane. My PT and OT therapists provide a rigorous daily schedule of workouts for me. My parents and everyone here are blown away by how much progress I’ve made. They’ve done such a good job that we’ve agreed on a discharge date of April 16 — much sooner than expected!

When Charlie Capalbo walked for the first time, hockey sticks banged throughout the isolation unit. Check out the Boston Bruins balloon too.

When I get home I’ll be in outpatient PT so I can keep getting stronger and closer to meeting my goals. I’ll also come to Boston every Thursday (the Jimmy Fund Clinic at Dana Farber) for checkups. I’ve already been there twice since moving to Spaulding and my counts have been great – thank you Will! (Charlie’s brother Will was a match for a bone marrow transplant.)

I’ve enjoyed seeing friends and family while here at rehab. I was especially honored to have had a very special visitor. The legendary Jack Parker (and his super nice wife Jackie) came to see me! Jack is the former Boston University men’s ice hockey coach. He spent 48 years at BU as a player, assistant coach and then head coach (for 40 years), and is an incredible man.

I’ve been really lucky to see visitors while here. I’m only able to because I’m still in a hospital setting, but once I go home I’ll have to be in protective isolation for a few months. This means that nobody can come into our house except for me, Will, my mom and dad. I’m also not allowed to go to any indoor public places or other private homes. I can visit with people outdoors, so I can see friends on our patio for the summer. I’m also allowed to go to a restaurant with outdoor tables, so I’m hoping we have a lot of good weather coming for spring and summer!

Will and Charlie Capalbo, post-transplant.

I’ll be on a strict post-transplant diet for about a year, which means that I have to be really careful of what I eat or drink to avoid infection, so please don’t be offended if I can’t eat something you share with me!

Yesterday my parents left me alone (not exactly alone — there were plenty of nurses and doctors around) for the day for the first time since October. They watched Will receive an Inspiration Award at the All-State hockey banquet. I really wish I could have been there in person, but I’m so happy they honored him with the award. I’m also glad to have a video of him receiving it. I’m so proud of my brother!

Thank you to everyone who supports us. You know who you are. We couldn’t have gotten through the last six months (really the last 2 years) without you guys! I can’t wait to be back to a normal life so I can pay it forward.

And an extra shout-out to our friends and family members who are always here for us…the kind who show up for whatever we need, including taking time off from work and driving for hours in Friday rush hour traffic to another state just to attend a 6-minute send off bubble parade! — with Jennifer Wilde Capalbo and 2 others at Spaulding Rehabilitation Hospital.

Charlie and his mother, Jennifer Wilde Capalbo.

To Evan: A Heart Full Of Love

This is one of the greatest videos I’ve ever posted.

But before you watch, be warned: Get some Kleenex.

In 2017, “06880” reported on the great work of Mat Jacowleff. The 2015 Staples High School graduate — then a Northeastern University junior — encouraged dozens of his Delta Tau Delta fraternity brothers to donate hundreds of pints of blood to Boston Children’s Hospital.

Evan Sheiber

He was inspired by Evan Sheiber, a Westport boy born with only one pumping chamber in his heart. Mat then went an extra several miles, delivering over 100 cards of encouragement to Evan as he prepared for his 2nd open heart surgery.

Evan is now almost 3. Once again, he faces open heart surgery. This one’s on Tuesday.

This time, Mat made a video for Evan.

And he didn’t just say, “I’m rooting for you, kid.”

Mat filmed dozens of folks cheering Evan on. His fraternity brothers are here. So are sorority sisters, Northeastern hockey players, Staples football players, Coast Guard Academy lacrosse men and Middlebury College lacrosse women.

There’s also a nice shout out from the folks at Boston Children’s Hospital, who run the “I Give Pints for Half-Pints” blood donor campaign.

Interspersed throughout are images of Evan himself. It’s just the thing a 4-year-old will love.

His parents love it too. Evan’s mom Britt says, “I have never sobbed and laughed simultaneously before in my life. Evan and his siblings keep watching it on repeat. This means so much to him.”

It’s 3 minutes of pure joy. Click below — and have that Kleenex handy.

PS: Speaking of joy: JoyRide Westport recently sponsored their 3rd annual Cycle for Heart fundraiser. Like Mat Jacowleff, they’re all heart.

Click here to learn more about the FORCE Fund (formerly known as Evan’s Heart Fund), which directly impacts the lives of everyone like Evan living with a single ventricle.

Mat Jacowleff’s Pints: The Sequel

Last month, “06880” shined a spotlight on Mat Jacowleff. The 2015 Staples High School graduate — now a Northeastern University junior — has encouraged dozens of his Delta Tau Delta fraternity brothers to donate hundreds of pints of blood to Boston Children’s Hospital.

But that’s hardly the end of the story.

Evan Sheiber is a young boy born with only 1 pumping chamber in his heart. Like Mat, he too is a Westporter.

Evan had a blood transfusion during open heart surgery a year ago. He’ll need another in his next operation. When Evan’s mom Britt saw the “06880” story, she posted a thank-you on Mat’s Facebook page. (Like Mat too, Evan was featured on “06880,” last spring.)

Evan is also the star of an inspiring video, produced this past summer by Boston Children’s Hospital.

The video inspired Mat and his fellow blood donors to write cards to Evan.

Last week, Mat delivered them.

There were over 100. All, Britt says, were “incredibly thoughtful and sweet.”

A few of Evan’s many cards.

One young man wrote: “Hey Evan. I’m a student at Northeastern. Just wanted to say I’m rooting for you buddy. Thank you for showing me what courage is. Much love buddy. Chris Li. ”

Another said, “Dear Evan, You are an inspiration to all the brothers at Northeastern in Delta Tau Delta. Keep Fighting. “

A third read, “Surf’s Up. Ride the wave to greatness.”

And this: “ While we’ve never met in person, you’ve left a lasting impact on me. You inspire me to give back and help every day.”

Britt read each one to her son. He’s only 1 1/2 — not yet old enough to fully understand the words — but he loved the colorful drawings.

Evan enjoys his cards.

Britt put them in Evan’s safe-keeping box. She’ll read them to him again, when he is 3 or 4 — before his next open heart surgery.

“I know they will encourage him to be brave, and to fight. Some will make him laugh,” she says.

“I am deeply touched by these college students. This is such a selfless act. These college students took time away from their crazy schedules to write thoughtful notes to my heart warrior, my son Evan.”

Britt and her husband Brett (!) have 3 boys (including Evan’s twin James), and 1 daughter.

She will be “incredibly proud” if her 4 children grow up to be the kind of fine young adults who give back to their communities.

You know — just like those inspired by her and Evan’s fellow Westporter, Mat Jacowleff.

Mat Jacowleff’s Pints

Mat Jacowleff hates needles.

But his desire to help people is stronger than that fear.

The 2015 Staples High School graduate is a junior business major at Northeastern University. He’s also community service chair at his fraternity, Delta Tau Delta.

When he saw a “Give Pints for Half Pints” sign at Boston Children’s Hospital, his next project was born.

Within days, he pitched a blood donor idea to his 100 brothers. Dozens responded.

Mat jacowleff (right) and a fraternity brother, with a commendation from Boston Children’s Hospital.

Mat was especially touched by a friend who approached him after the meeting. He said his younger sister had a disease that required frequent hospital stays — at Boston Children’s.

“Having someone I personally know say that to me really put things into perspective,” Mat explains. “It’s hard to imagine how much of an impact one donation can make if you don’t need it, or someone you love doesn’t need it. Having someone bridge that gap made me even more determined to make this event happen.”

The hospital responded as enthusiastically as Mat and his frat brothers have. The first day, the donors got pizza — in a room decorated in Northeastern’s black and red colors.

They were excited — and told the rest of the house. The next night. 20 more guys showed up.

“The best part is watching the impact this has had on my friends,” Mat says. “They come in hesitant and nervous. But they walk out with the biggest smiles on their faces, and they’re ready to book their next appointment.”

A hospital rep is impressed. “Planting the seed for long-term donation is key,” says donor recruitment team member Cynthia MacKinlay.

“People come once and they feel great. But once they come 2, 3 and 4 times, it becomes a habit.”

Mat continues to recruit donors. Already, another fraternity and one sorority have set up donation nights.

“If you are in a position of influence — as small as it may be — and you arent’ using it to make an impact, it’s a waste,” Mat says.

“I’m hoping this goes big. If donating blood becomes a trend at Northeastern, then it can spread to other schools in Boston and so on. There’s really no limit.”

(Hat tip: Gaetana Deiso. To read a fuller story from Boston Children’s Hospital’s blog, click here.)