A PROMISE KEPT
A vow to a dying mother brings two sisters together in a battle for one's survival.
Photography by Fran Collin
“Sisterhood” is more than a word to Robin Tobler. For over a decade, this 42-year-old Anaheim, California, woman has been a dedicated caregiver to her younger sister, Janelle, who is 31 and has peritoneal kidney disease. The sisters’ mother also had suffered from this hereditary nephrological disease and was long afraid her youngest child might have it, too. “When my mother was dying,” Robin says, “she told me her greatest worry was who would take care of Janelle. She’s the baby of the family.”
Despite the fact that her marriage had just ended, and she was faced with single-handedly raising her then–nine-year-old daughter, Robin promised her mother, “I will always look after my sister.” It’s a promise that hasn’t been easy to honor.
Soon after their mother died in January 1995, the “emergency-room nights” began. Janelle was having panic attacks, explains Robin, plus a whole range of medical problems. Janelle was increasingly unsteady on her feet and falling a lot. “We didn’t realize that kidney disease was creeping up on her.”
Janelle was living with their father at the time, but he’d been incapacitated by multiple heart attacks and was unable to help. Robin and Janelle’s three brothers had other responsibilities, with one of the brothers having a child with disabilities. So the constant trips to the emergency room fell to Robin.
In addition to aiding her sister, Robin was studying for a degree in social work at California State University, Long Beach. When one of her choices for an internship was with dialysis patients, Robin says, “[I] knew in my heart it was right for me.” She’s now a nephrology social worker.
Robin’s training has enabled her to understand her sister’s problems. Three years ago, at the age of 28, after an ultrasound exam showed dark spots on her kidneys, Janelle began hemodialysis, a process in which blood is drawn from the body, circulated through an artificial kidney machine to clear it of toxins, and filtered back into the body. Robin had to take Janelle for these hours-long treatments three to four times a week. But Janelle’s poor vascular system and some blood-clotting problems caused the dialysis access to fail many times. “It was always after doctors’ hours when she felt sick,” Robin explains, “so we kept ending up in the emergency room for another all-nighter.”
And since Robin didn’t want to leave her young daughter home alone, Sarah often had to come with her mother and aunt. “Many times after waiting there all night,” says Robin, “my sister would finally be admitted to the hospital and I’d take Sarah home to prepare her for school, then go off to a full day of work.” Robin worried that the many days she had to take off and her constant exhaustion—“Despite Diet Cokes!” she excalims—would jeopardize her job.
“I hadn’t realized how much this would affect my own life,” she admits. “I was the single mother of a troubled teenager, I was working in an emotionally challenging setting, and at the same time I was trying to keep the promise I’d made to my dying mother.”
Concerned about how much of her attention was being diverted from her daughter, Robin made a practice of scheduling a “special day” with Sarah once a month. “We did things together, like maybe seeing three movies in a day, having lunch, or maybe just talking and talking.”
Meanwhile, the doctors were running out of dialysis-access options. “They were very creative about finding veins, even in Janelle’s feet,” Robin confesses. But they had to switch to an alternate type of dialysis—peritoneal dialysis—where, instead of using a machine, a catheter through which fluid could flow in and out of the body is placed in the abdomen. The procedure worked for over a year before infections won out. “I felt as if we were on a physical and emotional roller coaster,” states Robin, “holding on to each other for dear life.”
Janelle was later put on a waiting list for a kidney transplant at the UCLA Kidney and Pancreas Program, but time was running out. Then their oldest brother, Kelton, who’d been told he also might have inherited kidney disease, heard about a more accurate genetic test. He took it and found he was healthy. He then contacted UCLA to volunteer as a donor for his sister.
Robin admits she was very worried about what this might mean for him. When she went to Kelton’s house to drive him to the clinic for the surgery, he insisted on showing her where she could find important papers, such as his life insurance. She asked if he expected to die. He told her he didn’t, but that as a former Boy Scout he’d learned to “always be prepared.”
With literally no access left, the transplant took place last April. “It was found to be the best possible match, 6/6,” Robin says. “My brother recovered quickly and the kidney he donated is working beautifully.”
But Robin concedes that nothing comes easily for her sister. Janelle’s been back to the hospital several times for procedures, such as removal of skin and tissue that inhibit healing of the incision area. As a post-transplant patient, she also has to be checked at the clinic three times a week. It’s an hour’s drive each way for Robin and Janelle, but now their brothers alternate with Robin, allowing her a little “vacation time.”
Because of changes in insurance coverage, home-healthcare agencies require that a family member be taught to change dressings. A nurse taught Robin how to pack Janelle’s surgical wounds. “I try to be gentle. But when Janelle winces with pain,” Robin admits, “my heart hurts, knowing I’m causing it. Sometimes I feel angry with God for her suffering. I know that’s wrong, so guilt soon follows.”
Robin’s daughter Sarah, now 19, has been an amazing help as she grew up, assisting her mother tend to her aunt and filling in when Robin had to be at work. “Once Sarah even took over the job of wound care after a surgical site failed,” Robin states, proudly adding that Sarah currently is studying for a career in the health-care field.
Robin’s weekend ritual involves arranging 20 different medications in containers for each day of the upcoming week. She also helps Janelle shower and dress, washes her laundry, changes her linen, shops for food and prepares low-fat/low-sugar meals suitable for Janelle’s condition. “I realized that it would be easier if my sister lived with me,” partly because of their aging and ill father’s physical incapacity to assist with Janelle, “so last year my brothers moved her into the spare room in my house.”
Understandably, Janelle gets depressed, so Robin tries to boost her morale. On a whim, she bought Janelle a fragrant antibacterial body wash. “Janelle told me, ‘It smells so pretty that it‘s the first time in so long I’ve felt feminine and not like some blob everyone’s taking care of.’ That brought tears to my eyes, because I realized again how much little things count.”
Since Janelle feels bad about not having gotten a college degree, Robin bought her a UCLA T-shirt when she “graduated” from the operation at the UCLA clinic. “She wears it all the time,” says Robin, who’s also encouraged Janelle to resume piano practice and to work with crafts. Janelle now makes needlepoint and cross-stitching gifts for the family. “I have to relearn how to feel good,” Janelle says.
Robin has found a way to motivate Janelle as well, promising that when Janelle gets better, they’ll go to Hawaii. “That’s been her dream,” Robin says. “When my office had a luau, I took the decorations and hung them on the wall of Janelle’s hospital room.”
There still are scary moments, Robin finds, like the day Janelle called her at work to say she had chills and fever. “My first thought was that her body was rejecting the transplant.” Fortunately, it was just 24-hour flu.
Although Robin admits she’s chronically tired and often cranky, she believes that the promise she made to her mother 11 years ago has enriched her own life. “The bond between my sister and me is stronger than it’s ever been,” asserts Robin. “She’s so uncomplaining that it teaches me patience. She’s also given me insights into my work, because when she speaks about her fear of never marrying or having children, and her happiness at seeing the love we all have for her, it helps me understand the many emotions of the patients I work with.”
Asked if she resents the burden placed on her, Robin’s answer is instantaneous. “I’ve never thought of Janelle as a ‘burden.’ I’m very blessed to be entrusted with this special role in my sister’s life.”