Most children would give anything to have two birthday parties a year. But when the Stanley family honors little Leiryn every sixth month, it’s as much about relief as celebration. “We just had her three-and-a-half,” says Leiryn’s mom, Carrie. “The truth is, she wasn’t supposed to make it to three.”
Leiryn has neuroblastoma, a childhood cancer related to the adrenal gland. The survival rate is barely 30%.
Try telling Leiryn that. On this sunny Sunday, she cavorts with her brothers Aiden (eight) and Owen (six) in the living room, and like all good parents, Carrie and her husband Charlie plea for quiet because two-year-old Kaelen is napping. Only the two family dogs, Maddie and Bella, oblige.
Every life in this large, loving family changed forever with Leiryn’s diagnosis in August 2009; when she outwardly seemed a healthy, happy 18-month-old. Her list of treatments is exhausting just to read: bone marrow and tumor biopsy; catheter; CT scan; six cycles of high intensity chemotherapy; 14 hours of surgery; more cycles of a trial chemo treatment given to only eight other children.
Nothing worked. “After lots of talking and praying, we decided to bring Leiryn home and spend as much non-treatment time with her as possible,” Carrie said. “And allow her to die when she was ready.”
Carrie is as strong a mother as that statement would indicate. But even she admitted the family could use some help. That’s where Katie and Colleen come in. Literally. The Arbor Hospice social worker and nurse, respectively, visit the Stanley home several times a week. Colleen examines Leiryn, asks about her pain and sleep, and looks after every medical detail.
And Katie? She does a little of everything else. “As a social worker, Katie’s been invaluable, letting us know about all the resources available to help Leiryn; insurance, government help, community programs, and on and on,” Carrie said. “And then there’s all the little things she does, like just watching the other kids for a while, so I can take a break.”
Carrie admits some of the Stanley’s friends and family questioned their choosing hospice over continuing the care path they were on, even though there was no concrete reason to believe Leiryn would improve.
"I have no doubt we did the right thing,” Carrie said. “Once Arbor Hospice came, I was able to concentrate on being a mom again, they take care of all the rest,” Carrie added. “They bring the medications, and no more trips to the doctor's office. Before Arbor Hospice came into our lives, we saw the doctor every other week and I only had 15 minutes for all of my questions. Now a nurse is here a couple times a week, and I can call her in between visits if I need to."
Both Carrie and Charlie’s extended families live close by, so Katie and Colleen even schedule visits if the Stanley’s family are visiting, too.
Then there was Tinker Bell. Leiryn wanted her at one of her all-too-frequent parties. Mom couldn’t find one. Katie did. Tinker Bell wasn’t the only one speechless that day.
“There has been some benefit to all this,” Carrie says. “We’ve learned how kind and generous people can be.”
Cancer has no conscience, you never know when it will come calling. But for one family, there is relief in the knowledge that Arbor Hospice will be there as much as they are needed.