Delia Saemenes misses home.
It’s been weeks since the 8-year-old has seen her house, her neighborhood, her friends and the city of Albany.
For now, she’s just over the border in California, where a helicopter dropped her off, living in a rented house with her three siblings, her mother and her father, glad to be alive.
“It will be six weeks since it happened tomorrow,” said her mother, Jessye, over the phone on Thursday. “We landed here on March 19.”
The day is one Jessye and her husband, Nick, will never forget. It’s the knot at the end of a string of days that saw their daughter come close to death and one that will continue to impact the rest of their lives.
Jessye noticed something off about Delia’s health in mid-February and made a doctor’s appointment. That was a Friday.
By Monday, the girl’s stomach was bloating.
“We brought her in,” Jessye said. “They looked at her, they looked at her blood work and immediately sent us to OHSU.”
At Oregon Health & Science University Hospital in Portland, the Saemeneses say they don’t remember much at all.
“An ER doctor came out and handed me a cellphone,” Jessye said. “The doctor on the other end — it’s all such a blur but I just heard ‘liver transplant’ and ‘Life Flighting to Stanford.’”
Delia was diagnosed with autoimmune hepatitis, a disease that essentially means her immune system is attacking her liver. Or it was until three weeks ago, when she received a transplant.
“Knowing someone had to die, it’s horrific,” Jessye said of the wait to hear about a match. “It’s a very emotional thing to deal with and we are believers, so I never once could bring myself to pray for a liver for her. I just prayed for the family that lost their child. It’s a bittersweet moment, and I will never be able to pass that transplant day without thinking of that family.”
Delia’s surgery was relatively successful except for an issue with her bile duct that was fixed days after the transplant. She was doing well enough to be discharged last Friday, but the family will have to remain in California for now. Possibly for months.
"It's not uncommon for families to stay close to the hospital for months," said Children's Organ Transplant Association President Rick Lofgren.
Often, families will utilize resources like the Ronald McDonald House that provides apartments for immediate family members to stay with patients close to the hospital. But that wasn't an option for Delia.
"The pandemic has made it more complicated," Lofgren said.
COVID-19 has closed schools and businesses and has seen hospitals delay procedures like chemotherapy and fertility treatments. The virus, which is responsible for nearly 60,000 deaths nationwide, has altered the way transplant patients recover as well.
Because of restrictions implemented due to COVID-19, the Saemeneses would not have been able to stay together at a Ronald McDonald House.
Delia and her mother had already spent three weeks on their own after flying to California with Nick. And while the stay-at-home orders meant the rest of the family was isolating in Albany and therefore relatively germ-free to rejoin Delia in California, it would have to be in a rented house.
"It was hard," Jessye said. "We left for a doctor's appointment and didn't come home for six weeks, really months. We said goodbye to our family but not goodbye."
Now that the family is together again and Delia's health is improving, the focus has shifted slightly to the financial consequences of the transplant.
"A liver transplant could cost $600,000," Lofgren said. "Insurance pays for some of that, but there's transportation, medication and lodging."
Jessye was handed a brochure by a social worker in the first few days of her stay in the hospital with Delia. It was for Lofgren's organization.
"They've been great," Jessye said.
The Children's Organ Transplant Association was founded 34 years ago to help a little boy in Indiana who was in need of financial assistance for a transplant. Since then, it has helped more than 3,5000 patients. Delia included.
"She will need help for the rest of her life," Jessye said. "She could have complications for the rest of her life and need to see a doctor. She'll be on medication for the rest of her life, and some of those medications can be $200 a month with insurance."
To help offset the cost, COTA has been hosting fundraising efforts for the family. One has raised just over $46,000 to be used for Delia's care. Currently, an online auction is raise money to help pay for their housing, which is 30 minutes away from the hospital. Because COVID-19 has slowed travel and traffic, the arrangement will work for now, but as soon as social distancing restrictions are lifted, the family may need to find a new home, closer to the hospital.
"Our community has been amazing," Jessye said, noting that local businesses donated items for the auction that will run through Monday.
"I don't even have the words to express how loved and supported we have felt by our people." Jessye said. "We're just so grateful for Albany."
For information on how to donate, visit facebook.com/cotaforteamdelia.