This past fall, Daniele Parker-Magnum traveled up from Richmond, VA with her husband, Linnie, to receive a bone marrow transplant for chronic myeloid leukemia at the Hospital of the University of Pennsylvania (HUP). As a native of Philadelphia — and a former employee at Pennsylvania Hospital — she wanted to go to Penn for her treatment. But, after an infusion of stem cells from a healthy donor in November, she and her husband needed to stay close to her treatment team for months, for follow-up and lab work. During that time, Parker-Magnum would be dealing with a compromised immune system as a result of the treatment that first wiped out her damaged immune cells, then replaced them with donor cells that needed time to grow and adapt to her body. She would need to take extra care to stay healthy. Nick’s House in Delaware County, the HEADstrong Foundation’s complimentary cancer patient lodging for out-of-town patients and their families, provided the perfect location.
For a while, all was going smoothly…. And then COVID-19 hit the region.
For Parker-Magnum — as well as many other cancer patients at the Abramson Cancer Center (ACC) — the coronavirus pandemic would cause changes in their care … and accommodations. This is especially true for patients with blood cancers that are fast-moving and require long hospitalizations after treatments, Fortunately, the ACC team has readily jumped in and adapted to help keep patients safe during their treatment.
On the morning of Wednesday, March 18, Parker-Magnum received word that Nick’s House had to close… that same day. She reached out to Jacqueline Smith, MSN, CRNP of Hematology Oncology, asking her what she should do. “Could I go home or did I need to stay close by… and for how long?”
Two hours later, Tiffany Raroha, LCSW, a social worker in the ACC, called with a solution. She had learned earlier that Nick’s House — and Hope Lodge (which also offers cancer patients free lodging in the area ) — were closing and had already begun searching for alternatives for ACC patients and families. Initially, “we were in a panic,” said Heather Sheaffer, DSW, director of Patient & Family Services at the ACC. But they came through for Parker-Magnum.
Working with Sheaffer, Raroha arranged for Parker-Magnum and her husband to stay at Cornerstone Bed and Breakfast, starting that night. “It was a great location,” Parker-Magnum said, but with no access to a kitchen to prepare her restricted diet, it could only be temporary. She needed plenty of carbs and protein to rebuild her system, with no fresh fruit or other raw food. Plus, “my meals must be cooked by my caretaker. We had a training course to go over everything.”
Two days later, Raroha called with a more permanent solution: URHomeinPhilly, which offers short term apartment rentals in the city. “They were wonderful — they wanted to help — and were willing to give us a significant reduction on the rent,” Sheaffer said. With proximity to HUP as well as a small kitchen and washer and dryer, it was perfect. Even better: They could stay through May 9.
Parker called the social workers who helped her “incredible. The response time was amazing and the attention to my needs was made a priority,” she said. “I am extremely grateful and thankful for their work and energy.”
Continuing Treatment Without Worry — About Where to Stay or How to Pay
The ACC team not only helped find these accommodations for Parker-Magnum and her husband, but also helped them with the expense. Sheaffer facilitated payment for the stay through philanthropic donors to Penn Medicine. “These patients have to stay in the area four to six weeks after discharge and with lodgings costing at least $120 a night, the out-of-pocket cost can be exorbitantly expensive. It presents an enormous financial burden to patients and families in the midst of an already stressful time,” she said. “We typically spend a few thousand dollars on lodging each year for patients in need who are unable to access free resources typically available in the community.” But with most of these options closed due to COVID-19, “one stay can cost several thousand dollars.
“We’re lucky to have the philanthropic support we do, but we’ll need more,” she continued. In the coming months, “we will see patients in much more challenging financial situations.”
In addition to Parker-Magnum, Sheaffer helped another bone marrow transplant patient and her family find affordable housing. Rather than receiving marrow from a donor, this patient had her own stem cells collected and treated with high doses of chemotherapy in advance of an autologous transplant. Sheaffer reached out to the Penn Medicine Clyde Barker Transplant House, which offers low-cost lodging for transplant patients and their families.
The House was staying open, but to keep social distancing among guests, they were only using half of the 13 rooms normally available. Luckily, the bone marrow transplant patient and her family were able to stay, a relief for everyone involved. With the lodging question resolved, “people can move forward with treatment without worrying about where they will sleep tonight, “Sheaffer said. “We’ve seen incredible kindness that’s genuine.”
At the Transplant House, even with social distancing, the families there have managed to become a community, said Kirsten King, manager of Operations & Community Relations. For example, they take turns in the kitchen but also leave food on the counter for other guests with a “Help yourself” note. “And anyone going to the grocery store will reach out to others to see if they need anything,” she said. “It’s great how they’re taking care of each other. It’s really been moving.”
And, thanks to the “incredible staff, we have doubled our deep-cleaning efforts. The staff has been incredibly flexible. Everyone is pitching in.”
Clinical Challenges for Continuing Life-Saving Treatments
While the COVID-19 outbreak hit after Parker-Magnum was in follow-care from her transplant, patients with similar cancers have continued to initiate new treatments, including both stem cell transplants and CAR T cell therapy. For the ACC clinical teams, COVID-19 has presented a whole new set of challenges, said Alison Loren, MD, director of Penn’s Blood & Marrow Transplant, Cell Therapy & Transplant Program. To keep vulnerable patients safe, teams are postponing infusions when possible. “Some patients can be safely delayed, for example, if the treatments they are currently receiving would be expected to continue to work safely,” Loren said. But if it’s a curative therapy, “there’s a critical time in treatment when the stem cell transplant needs to be done — a window. If you don’t do it, it closes.”
For an allogeneic transplant — i.e., the stem cells come from a donor — part of the donation sequence had to be completed ahead of the patient’s scheduled transplant. As Loren explained, normally a patient undergoes an intense preparative chemotherapy regimen before receiving the donor cells while the donor simultaneously prepares to donate. “Now the National Marrow Donor Program [Be the Match] recommends that we receive the donor cells on site to be frozen and stored ahead of time, before the patient is admitted for preparative chemo,” she said. “In that way, if the donor got COVID, we wouldn’t have the patient conditioned and waiting.” Her team worked with HUP’s stem cell and apheresis lab to make this change alone. “There were easily 15-20 people involved.”
The process has also changed for patients eligible for CAR T cell therapy, a treatment that uses patients’ own immune cells to fight cancer. Those cells are collected during a blood draw, engineered to attack cancer, then infused back into the patient. That manufacturing process takes time, meaning patients don’t get their cells the same day they have their blood collected. They receive chemotherapy in the interim. Doctors recommend these patients, whose immune systems are already compromised, undergo additional screenings for COVID-19 at each step of the process.
“Since the treatment can be life-saving, we still recommend patients who are candidates for the therapy move forward with it. But the extra steps are needed to make sure these patients are as safe as possible,” said David Porter, MD, director of Cell Therapy and Transplantation.
“COVID has made us think of things you wouldn’t normally think of — it’s stretched our creativity,” Loren said. “If it’s safe to delay for patient, we do it. But many people can’t wait. We had to figure out a way to do it that’s safe.”