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.
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 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!
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.