In this apartment building in Boston, there are so many families with so many stories. This is Madalynne Kersting’s story.
Just 21-months-old, and she’s been through more than most have in a lifetime. “She has a tumor in her fourth ventricle that is also in her auditory canal, as well as creeping down into her spinal chord,” Lisa Kersting says. Madalynne has had three brain surgeries and several rounds of chemotherapy. Now she’s in Boston, with her mom Lisa, Dad Jimi, and sister Lilli, all the way from Chicago for treatment. They are living in a place called Christopher’s Haven.
Six-year-old Allyson Perry, with mom Michelle and sister Sydney also call it their home away from home. They came from Oklahoma. “Allyson was diagnosed with a benign pituitary macroadenoma, which is a brain tumor, at the age of four, which was two years ago. And at the time, she had a major craniotomy to remove ninety percent of the tumor,” Michelle Perry says. But over time, Allyson’s tumor had grown back, and this time, it was malignant. “They told us proton in Boston. Those were the two things, so when you have St. Jude’s telling you to go to Boston, you listen,” Michelle Perry says.
And they did. They came to Mass General for Children, where they have a state of the art radiation treatment called proton therapy. “Proton therapy is a unique form of radiation therapy that targets the tumor more so than prior forms of radiation therapy, and therefore, can spare normal organs and tissue with the damage associated with radiation,” Dr. Howard Weinstein, Chief of Pediatric Hematology and Oncology at Mass General Hospital for Children, says.
Treatment is one thing, finding and affording a place is another. It is not easy, says Michelle Perry, “where did you go, where did you stay, how much did it cost? You know, all of those questions that you have when you find out you’re going to be uprooted and move fifteen hundred miles from home. And they said we found this great place called Christopher’s Haven.”
Christopher’s Haven is a non-profit organization providing individual apartments for families of children who have traveled to Boston to get proton therapy. The cost, around $30 a night, which is far more affordable than hotels or short-term apartment rentals, and the closest thing to a home away from home. “We have our own kitchen and our own living room and bedroom,” Lisa Kersting says, “we also, besides being able to be just us, we have the advantage of being able to open our door into the hallway and see other families who are going through the same thing.”
Dan Olsen is a three-time cancer survivor himself, and founded Christopher’s Haven nine years ago. “The friends that they’ve made here, they said, feel like family, because they went through something that no other family would normally go through and they went through it together, because of an organization and the community that Christopher’s Haven built,” Olsen says.
“It’s such a huge thing for all the families that come, because it gives them a haven, if you will, to just be able to come, relax, decompress, but still be close to their medical doctors in case there’s an emergency. And just the convenience of taking five minutes to walk to treatment everyday, it’s a huge blessing,” Michelle Perry says.
The families all wait to ring a bell in the proton center’s lobby. It is a sign that treatment is over. “The first time I heard the bell ring, I cried and I didn’t even know these people, but it’s such an accomplishment. It’s very emotional,” Lisa Kersting says. And now, the Kerstings and the Perrys, who were strangers two months ago, will be finishing their treatment together, and will ring this bell on the same day to go home but will never forget the bonds they made in Boston.
“We moved in the same day as they did, and we’re moving out the same day as them. So it’s been very, very cool to have developed a relationship with them, and they’ll be forever friends of ours,” Lisa Kersting says.