The drives. They were wearisome. They got old. Lee Mikel isn’t going to sugarcoat that. Three days a week -- every Monday, Wednesday and Friday for the past seven years -- he drove his son Noah to dialysis treatments.
The drives were five hours, round trip each day from Nappanee to Indianapolis’ Riley Hospital for Children at IU Health.
Noah would sleep inside that car. Mikel would dream.
He would dream of the day Noah would get a matching kidney donor. When his son could get a transplant surgery. When he would be able to be a kid again, a kid whose life wasn’t planned around long trips to the hospital.
Of course, Mikel felt blessed to have Noah riding in that car seat next to him. His son was born 16 years ago with a rare genetic birth defect called prune belly syndrome. It’s an abdominal muscle deficiency, a syndrome that caused Noah to lose kidney function when he was just 9 years old.
There were times along the way that Mikel thought he wouldn’t get to go on that car ride with Noah again.
“There were several times I thought we would lose him. He would be lying there lifeless and the nurse would say ‘He can hear you. Talk to him.’” Mikel said. “So, I would talk to him. And, somehow, he always pulled through.”
And Noah and Mikel would be back on that schedule of driving to Riley, 840 miles a week, with Mikel dreaming of the day a match would come.
He had no idea as he pulled into Riley each day for seven years that right there -- right at IU Health, at University Hospital -- was a woman working as a transplant social worker, who would make that dream come true.
Jane Forbes has watched transplant after transplant. As a social worker at IU Health’s University Hospital, she works with patients and families facing surgery. She is their shoulder to lean on. She is their rock.
She is the one who talks them through their worries and through their fears -- and she is the one who celebrates their successes.
Forbes always thought it must be a wonderful feeling to do that for someone else, to be a donor. And then, not so long ago, after watching two dear friends receive organs, one a liver and the other a kidney, Forbes decided to move forward and become a kidney donor.
And after the testing and the paperwork, there was only one thing left to do. Wait for that match. Wait just as her patients do, as her donors do. Wait.
It was the Wednesday before Christmas when Forbes found out. She had matched a 16-year-old boy. She didn’t know that it was Noah Mikel. She had no idea who he was.
But she knew that she wanted the family to know.
“It was very important to me that they knew before Christmas that they had a matching living donor,” she said.
So they could have a better Christmas than they’d had in years.
The surgeries happened on Feb. 1 – exactly seven years to the day that Forbes started at IU Health. Almost seven years since Noah went on dialysis. And on the birthday of Noah’s grandfather.
Mikel and plenty of others have called Forbes a hero.
“I’m not a hero,” she said. “In the transplant world, we see people do this for others every day.”
This is only the second time Tim Taber, M.D., IU Health transplant medical director of kidney and pancreas transplantation, has heard of someone inside a hospital donating an organ.
It’s rare. And it’s fantastic, he said. Noah could have waited many more years for a match his condition is so rare.
To have that match from within the IU Health system?
“Definitely unusual,” Dr. Taber said. But wonderful.
The two sat together on Tuesday, Noah next to Forbes, six days after their surgeries. And seven years after both their transplant journeys began -- Forbes helping others go through one and Noah waiting on one.
“He has fought for 16 years. He is strong,” Forbes said. “He has eyes and a smile that light up a room. He is a hero. He is something special.”
For Forbes, it’s been humbling to be on the other side -- as a patient.
“It’s hard to be so vulnerable and on the opposite side. I’m used to being in control,” she said. But to meet Noah and his father and see what they’ve been through?
“It’s the most raw, intense emotion. It’s a good reminder of how easy it is to love,” she said. “And I do love both of them. They’re my family now.”
Mikel doesn’t even try to put into words the feelings he has for a woman who gave his son a new life.
“There are no words to express…” he said.
Noah did have some words, though few, to describe how he feels.
“I’m done. I’m officially done,” Noah said, referring to his dialysis. “No more machines.”
He fiddled with Hot Wheels cars as he talked. Noah is a huge fan of the cars; he has more than 2,000. He’s also a fan of cars, the real variety. This summer, he will get to live out his dream, riding with his uncle in a Lamborghini, one he hopes is lime green.
It will be a far different ride than the one he made the past seven years, three days a week, to the hospital.
This car ride will be his best ever.