Comforts of Home
It’s a dilemma many families face when their child is in the hospital: finding a place to take a break, get something to eat or share with other parents. One couple’s experience with their own daughter’s cancer treatment was the inspiration for a special space they helped create on the fifth floor of Hasbro Children’s Hospital in Providence. This month Jim Hummel introduces us to The Izzy Room.
For more information about the Izzy Foundation click here.
On a Wednesday night last month Jonathan Briendel - The Mad Scientist - is teaching half a dozen kids to make…slime. They vary in age and come from all walks of life - but if you take a closer look it’s clear they have something in common: these children are all are patients at Hasbro Children’s Hospital, many being treated for cancer.
Just steps away from their rooms on the hospital’s fifth floor is a place they and their families have found to be a refuge from the world of testing and treatment: The Izzy Family Room, which opened in 2014.
Scot: “I think the beautiful thing about the Izzy room is everybody wants space where they can get away from the hospital room.”
Erin Scott is the executive director of The Izzy Foundation, formed eight years ago to help defray the medical costs for Isabelle Marie Wohlrab during two years of cancer treatment that would take Izzy and her family from Providence to Boston, then Houston to Germany and back.
Her parents, Tina Robison and Kyle Wohlrab - both doctors at Women and Infants Hospital - were inspired to create this space by their own experience with Izzy.
Robison: “One of the hardest things for us here was meeting other parents or having that space where you could just go and be parents separately.”
Wohlrab: “So you’re living in the hospital with your child and we wanted a home away - it is a home away from home. It already is So we wanted a space that could feel like a home.”
Robison: “In Germany we were in this small area where there was a kitchen and we were with eight families, all of who spoke different languages for the most part.”
Wohlrab: “All different.”
Robison: “And we met more people there than in our 2 /12 years here.”
Three or four days a week parents can walk down the hall for a meal, provided by a rotating group of corporate sponsors, with the help of a cadre of volunteers. Sometimes their children come with them, other times it gives them a chance to get away, while being just steps away if they are needed.
Scott: “They can have a meal, they can meet other families, they can get a cup of coffee. They can have a quiet conversation with their partner about the treatment and what’s happening with their kids without their kids in the room.”
Some kids look forward to joining in with their parents to vary the routine of hospital food. Or - two social work interns will pack up food and take it to families in the patient’s room down the corridor.
Scott: “That’s what this space is all about, it’s creating an environment that let’s you just get away for a little bit. It lets you be normal. These are kids who are normal kids who happen to have cancer, who happen to have some sort of life altering medical condition. They’re still kids. And these are families still wanting to see their kids be kids.”
Because of that, Scott schedules special activities throughout any given month. In February, it included a Valentine’s Day gathering that featured a meal and an appearance by a princess who sang her favorite songs.
There was also face painting just outside the room.
A Comedy Night that not only had the kids laughing, but performing as well
And the Science Night, which saw an increasing number of children arrive over the course of the evening as word spread down the hall.
Scott: “As parents we want to see our kids happy and joyful. There’s something when you see a kid laugh, when you see your own kid laugh and your own kid having fun at the comedy show, or having ice cream social or doing the science show or getting face painted it brings joy to a parent.”
The room, which is available to the families 24/7, is equipped with things that parents might take for granted if they were at home.
There is always coffee available. Snacks and toiletries are stacked in bins on the counter.
The room also has simulated skylights throughout and a spectacular view of downtown Providence.
Robison: “We walked in when it was first opened and finished, it was a ‘Wow’ - and what it made us realize is that as a foundation everything we have to do has to be a wow because that’s what Izzy was, is a wow.”
And it is a sea of purple - Izzy’s favorite color.
Izzy was diagnosed with a rare form of cancer two weeks following her first birthday, after coming to the emergency room at Hasbro.
Robison: “I remember her oncologist looking at me and saying ‘Tina, she’s okay right now.’ I remember Mom kicking in and I said: ‘She is not okay until this cancer is gone.’ And it was an interesting moment as an oncologist because I have remembered feeling that and it’s changed a lot of how I practice or how what I say and I understand it so much differently now.”
So much of what The Izzy Family Room is today was inspired by the experience her family had in various hospitals. They watched their daughter learn how to walk, then talk in a medical setting.
Izzy died in 2012 at the age of 3 ½.
Robison: “I think her attitude and that joy and happiness and just really true love of life and all the things around her really helped us just keep living that and living life. So we really didn’t stop. We tried to say this is now just our new normal. And the new normal is still going to be great. And we’re not going to wait for it to be done, we’re going to live it while it’s happening. Because that was our time actually.”
Wohlrab: “The best benefit is not being scared of the hospital. When we took her in this was a place we were familiar with because we spent most of our days there.”
Robison: “And I think what we realized afterwards was that we were lucky because she helped us do that and we wanted to help others do that. It’s hard in a hospital. It’s hard to remember how to live. And it’s hard to laugh and it’s hard to cry, there’s nowhere to do those things And that really led us to thinking about creating this Izzy room and then ultimately Izzy spaces, that allowed people to still live.”
Scott also knows firsthand what it’s like to have a children with cancer: her son Zackary died at age 6, two years after he was first diagnosed. And she sees what other parents are going through with a different lens.
Scott: “You watched your kid get diagnosed, you think it’s an ear infection - something that doesn’t feel right, the fever won’t go down. You end up in the ER, the ER turns into an overnight stay; you’re hungry and tired, you didn’t bring your toothbrush or toothpaste so that’s why we have hygience kits here.”
Scott is a licensed social worker who also teaches at Brown University.
“Scott: And it was because of Zack’s life that I got involved in pediatric oncology and nonprofits in general. It’s because you never want to waste your suffering. So Zack’s life is so precious and so beautiful and I am so blessed to be his mother, even to this day. He is what motivates me and these families and these kids that I work with motivate me. But it’s that suffering that I went through, I can’t waste it.”
The Izzy Foundation will soon be opening another space - this one on the second floor of Hasbro: a surgical waiting room aimed at helping families cope with the stress of waiting out surgery for their children - and its aftermath.
It, too, features a massive widow, and will soon be filled with comfortable furniture. A kitchen will allow for food and a cup of coffee. And maybe most important: a dedicated area for a family to meet with the doctor following surgery.
Scott: “It is important that we give families the space to be able to process the outcome of a surgical procedure, whether it’s good or bad in a private setting. And so it gives doctors the time to be able to come into a room, to meet a family to have a moment to sit down and say to you: this is what happened today and this is what the next steps are.”
Izzy’s parents are gratified by the volunteers who help make it work, day-to-day, week-to-week and month-to-month - for the past five years.
Robison: “I think every community has people who want to give and do something. And this is such a good, tangible thing to do. You see it and everybody likes that. You can come and serve a meal, not only donate it, but your company can come and actually serve that. People like that.
And that their vision is playing out on the fifth floor where they spent so many days -and nights - all those years ago.
Robison: “We never wanted to build just a space. Part of the agreement was that we would be part of the space forever and that it would become something that was not static but that could evolve with the needs of the families. And that was always the goal and the hope.”
In Providence, Jim Hummel, for The Rhode Island Spotlight.