Tom, currently from his hospital room, and Dorene, from her room at KGH, joined us via zoom to share their story.
Life changed dramatically for the Sorensen family this past November when Tom was diagnosed with Acute Myeloid Leukemia. Tom and Dorene, who live with their four children in Freeville, NY, uprooted up their lives to be near Roswell Park Comprehensive Cancer Center for a stem cell transplant treatment. It was there that they found out about Kevin Guest House.
“When we first found out we’d need to stick around for 100 days after [the stem cell transplant] you think, How do we do that? Where do we even begin?” says Tom. “Having a place near-by that was all set up for exactly this situation, and then to get there and talk to other people about their experiences – it’s so helpful to have people who are going through the same thing we are, and talk about how they were dealing with it.”
“It’s been a blessing to our family,” says Dorene, a teacher and administrator at a small Christian school. She and Tom, an engineering manager, continue to work remotely. They are grateful to be able to do continue their work, especially right now, with so many people losing their jobs. “It’s good for the psyche to keep my mind busy,” adds Tom.
It’s been nearly six months since treatment began, and if all goes well, they have at least another two months ahead of them. Without Kevin Guest House, the cost of staying in a hotel for that extended period of time would be a serious strain on any family. “We’re fortunate, we might have been able to figure something out, somehow… but there’s a lot of people who don’t have the resources we do. They would be really, really stuck without Kevin Guest House. For a lot of people, there is no recourse,” says Tom. “And we’re really happy to have this option. This would be so much more difficult without Kevin Guest House. It really is a godsend. Having a place to stay is just one less thing to have to worry about.”
Dorene agrees. “The list of things that change [after a major diagnosis] is so huge. To be able to say, ‘OK, a place to stay is one thing I don’t have to worry about’ when you are dealing with all these other things… the peace of mind is great.”
In the beginning of the treatment process, both Tom and Dorene were staying at KGH as Tom had daily appointments at the hospital. The proximity to Roswell was a big help. Prior to the local COVID outbreaks, Dorene would travel back and forth to be with their four kids, who are ages 16-20 – one with special needs. “The other guests would offer to help me,” said Tom, which also gave Dorene peace of mind. “‘If you need to go somewhere, I’ll take you,’ they offered, so having that communal atmosphere was nice.” They’ve also gotten to know the staff well, who Dorene jokes have helped with everything from delivering mail and helping when she locked herself out, to facilitating a connection when her transmission blew on the family van, and they needed to purchase a new car. “It’s amazing,” she says. “Silly things that come up every once in a while, there’s always someone you can ask for help.”
Like so many of our guests, the donated meals are something they also really appreciate, especially once they need to worry about COVID exposure. “The meals have really been a blessing because it’s so hard to get groceries right now. And, they clean every day. I feel like I’m being pampered!”
And if anyone deserves to feel pampered, it’s Dorene, who has been using her time generously. When the pandemic caused visitation to the hospitals to be restricted, she began passing the time is by sewing face masks, setting up shop in the dining room at KGH. She’s sent out 50 masks to the nurses as Roswell, friends, and family members, with another 50 masks ready to go. “I have enough supplies for a couple hundred more,” she laughs. But, being unable to visit during Tom during this time is an additional challenge.
“I think it was actually a godsend that she didn’t get to see me at my worst,” says Tom. While Dorene certainly would have preferred to be by his side, the COVID situation mean other sacrifices too. “I would have continued visits home to be with the kids,” says Dorene. Her children, ages 16-21 dealing with the stress of virtual learning and home-confinement on top of their father’s illness. However, limiting COVID exposure is a high priority when a family member is immune-compromised. “There was hardly any COVID in our area, but I would still need to make stops on the way home, so I decided to stay.” Like other families who are socially-distant, keeping in touch virtually has helped. One son records himself playing his guitar, which helps to lift everyone’s spirits, and there are calls and texts with the others.
Other caregivers at KGH understand. While they are careful to maintain a safe distance and follow careful protocols, the conversation with other guests at the house has also helped make this time a little easier for Dorene. They especially like catching up on the front porch. “It’s good to have other people who know what you’re going though. We update one another on our family members. Get advice from each other. Even just compare notes on some of the doctors,” she says of her new-found friends.
Tom is currently expected to discharge from the hospital this week, and he will move back into one of the Kevin Guest House apartments with Dorene for the next two months, per the treatment protocol. They look forward to returning to their own home, but will still be required to visit for follow-up care, and Kevin Guest House will continue to be their “home away from home”.