When you choose to donate an organ, you choose to save a life!

Evan and Eli Haines

At home they're often, half teasingly, called "the E bros." Evan and Eli are five years apart at 15 and 10, but they're often thought of as something closer to twins among the four Haines boys. Evan is a Star Wars fanatic and Eli a SpongeBob enthusiast, but together they spend most of their time playing LEGO. Recently, though, they started spending several days a week together in the pediatric dialysis unit at Levine Children's Hospital.

The E bros share a bedroom at home and joke about whose dry weight, a critical metric for kidney patients, went up the most when they go for blood treatment three times a week. Both boys seemed relatively healthy and active, and signs of danger were mostly subjective. In July, when Evan went on a Boy Scout high-adventure camping trip, one of the adult leaders, a doctor and family friend from church, saw ample signs for concern and advised Evan's parents to have him checked by a specialist. After years of inconclusive answers from doctors, this specialist saw what others had not.

Evan's parents got a call the next morning: Evan was in end-stage kidney failure and a room was waiting for him at Children's. After almost two months of dialysis and planning for a transplant, the family was adjusting to their "new normal." That's when Evan's parents, Bryant and Laura, were finally able to have his three brothers tested. Mom and Dad had a feeling about the youngest; the symptoms, however subtle, were too similar. The doctor called the next morning to confirm: Eli also needed immediate treatment and a transplant.

Eli was admitted just one room down from where Evan had stayed, giving Evan a chance to be the veteran advisor, support partner, and in-room LEGO supplier. Now both boys are home receiving outpatient dialysis while preparing for transplant, and the Haines family is adjusting again.

Part of that new normal is preparing for the cost of two family members undergoing major surgery (four if Mom and Dad turn out to be donor matches). Their dad works for a bank and has good insurance, and the boys qualify for Medicare despite their ages because of the chronic nature of their condition. Even with these safety nets, out-of-pocket costs are already piling up and will be significant over time. With a lifetime of immunosuppression medications and another kidney transplant every five to fifteen years, the road will be long.

Getting to know the Levine pediatric dialysis unit

In December, kidSney sat down with Lynn Puma, clinical social worker for the pediatric dialysis unit and transplant center at Levine Children's Hospital in Charlotte. She shared enlightening information, her concerns, and ways our organization could help. Lynn sees about 8 to 10 children a day; about 25 children were on dialysis at LCH, many of them babies, and 16 children were waiting on a kidney transplant. Since our meeting, two of those children received a kidney, which Lynn explained is very rare and quite amazing!

The wait for a child's first kidney is typically 6 months to a year; a second kidney takes much longer, and some have waited over 4 years. Because a transplanted kidney lasts around 10 to 15 years, children will need another transplant in their lifetime, sometimes several. Some need one sooner due to not taking anti-rejection medications properly or not following their diet; others can go longer. Transplant is preferred over dialysis for children, because children on dialysis do not grow as well.

We wanted to know how to help children spending 15 hours a week in dialysis, or waiting for a kidney, pass the time and enjoy a better quality of life. At Levine, other pediatric units such as cardiac and cancer receive lots of attention and support from families and outside organizations; the pediatric kidney unit would be delighted for support too. kidSney organized a night to visit dialysis kids, deliver games and crafts, and meet each child individually, and began planning a summer picnic to bring families together for support and laughter. Dialysis is an extreme, tiring commitment for the whole family, and we believe fun activities together help families know they are not alone.

kidSney created wish lists for each child (if they had an extra $5, $20, $50, and so on). We look forward to working with these special children and their families. Thank you to Lynn Puma, who shows such compassion and love for these children. She is an inspiration!