JOHNSBURG, Ill. (AP) - Married not long after graduating from Johnsburg High School where they met, Ryan and Ashley Wagner’s joy 10 years later over expanding their family was quickly followed by a blow.
“We found out we were expecting in December 2013, and then, literally a week later, we found out Ryan had cancer,” Ashley said.
They had been planning on telling their families about the pregnancy at Christmas.
“The conversation pretty much went, ’Ryan has cancer, and oh, by the way, we’re pregnant,’ ” Ashley said. “I’m sure they were shocked at both.”
Miles Ryan Wagner was born Aug. 10, 2014.
“He was born on a Sunday, and we went home from the hospital on a Tuesday,” Ashley said, remembering how she thought that everything simply had to be fine. She had a husband with cancer, and that was enough to worry about.
Then, when Miles was 8 weeks old, Ashley saw him have a seizure. They rushed him to the emergency room.
“Never did I think the doctor would say, ’I’m sorry, but your baby is in kidney failure,’ ” Ashley said.
It was another twist to the Wagners’ story, the latest of which has brought them back to high school, where they first met.
Ryan’s initial diagnosis was good, with doctors thinking a surgery followed by 12 rounds of chemotherapy would eradicate the cancer.
But halfway through the chemo, a scan revealed that the cancer had already spread.
“It had been stage 4 all along,” Ashley said.
They went for a second opinion and looked at options, but the doctors’ consensus was that surgery was not a good choice and would not be curative.
“That’s when it transitioned to chemo for life,” Ashley said. “It probably means that his life span is going to be cut drastically much shorter.”
Ryan was 29 years old at the time of the diagnosis, with no family history of colon cancer and no symptoms until he thought he had a relentless case of the stomach flu.
He has since gone through 70-plus rounds of chemo, longer than any other patient his doctor has seen.
Ryan said his goal is to live to five years beyond the initial diagnosis.
“Of course, we hope and we pray for as much time as we can get, but we also have to balance - we’ve talked about this - balance quantity with quality,” Ashley said. “We always have that in the back of our heads, I think, making sure our time together is quality and we’re living the best life possible.”
At about 5 weeks old, Miles began crying a lot and throwing up.
“You don’t want to be that crazy mom who’s running off to the pediatrician all the time, because new babies do cry, and they do spit up,” Ashley said.
The pediatrician initially thought Miles had acid reflux and prescribed a medication to try, but it didn’t work. Then Ashley saw him have the seizure, and brought him to the ER, where the doctors said he was too sick to stay - he needed to be transferred to Advocate Lutheran General Hospital in Park Ridge.
“We were there for three days and I think it was on the second day they started throwing this word around that I had to go look up,” Ashley said.
After another transfer, this time to Lurie Children’s Hospital of Chicago, where the diagnosis was confirmed: primary hyperoxaluria.
According to the National Institutes of Health, primary hyperoxaluria is the result of overproduction of a substance called oxalate, which usually is filtered through the kidneys and excreted as a waste product in urine.
As a result of the condition, Miles would need not only a kidney transplant, but a liver transplant, as well.
“I remember when getting ready for the transfer to Lurie crying like, ’What did I do to deserve this?’ ” Ashley said. “The craziest thing really is that the shock of Ryan’s diagnosis helped prepare us for the shock of Miles’ diagnosis. I think we both were just completely overwhelmed, and that’s an understatement.”
So began the juggling of chemo for Ryan and dialysis for Miles.
Five days a week, the family traveled downtown for dialysis, usually taking about eight hours to get there, receive treatment, and get back home to Woodridge.
He’s in a roomful of children with life-threatening conditions, Ashley said.
“I feel like until you personally know someone that needs a transplant, you never think it’s going to happen to you,” she said. “Until it does.”
Miles’ liver would come from a deceased donor.
“That’s kind of hard to wrap your head around,” Ashley said. “For your child to live, someone is going to have died.”
But on the flip side, many people told her that when someone dies, it’s often a gift to know that their loved one will live on through organ donation.
Miles waited 11 months before Ashley received the call while at dialysis.
“It went from all of the happy tears and, ’This is it! Miles has a liver!’ then my mind went to this family, which we knew nothing about,” Ashley said. “We just knew that someone was dying; they were on life support.”
Thirteen-year-old Abby Reiswitz of northeast Wisconsin died from allergy and asthma complications.
The 12-hour transplant surgery didn’t go smoothly.
Clotting of the main artery affected blood flow to the liver so seriously that Miles was relisted for a new liver.
“So much went wrong, and then Miles turned the corner and didn’t look back,” Ashley said.
Once Miles began to thrive with his new liver, the search was on for a kidney.
Which is when someone unexpected came along.
A fellow Johnsburg grad, Liz Wolodkiewicz, is scheduled Feb. 6 to donate one of her kidneys to the little boy she hadn’t ever met.
Wolodkiewicz hadn’t kept in touch with Ryan or Ashley since high school, but had followed the story through their Team Ryan page on Facebook.
“(Ashley) asked the question, ’Is it on your bucket list to save a life?’ ” Wolodkiewicz said. “I thought that should be on everyone’s bucket list . and how many people have the chance to do that in their lifetime?”
After two previous potential donors didn’t work out and she passed initial questioning, Wolodkiewicz was the next human pin cushion on a “donor evaluation day” that included a CT scan and EKG.
In December, Wolodkiewicz was declared a match, but there were signs along the way, she said.
A student gave Wolodkiewicz, who is a speech language pathologist at Johnsburg Elementary School, a lime green butterfly ring. That color and butterflies are symbols of organ donation awareness.
Plus, her birthday this year falls on National Donate Life Day.
“At first, it was like, ’If I’m a match, I’ll donate,’ ” Wolodkiewicz said. “Then it turned to, ’Oh my God, I really, really want it to be me.’ I want this kid to get healthy, and I want Ryan to be able to see him get healthy.”
Transplants aren’t a cure and come with a lifetime of medication and immunosuppression. A donated kidney usually has a lifespan of about 15 years, so another transplant is in Miles’ future, Ashley said.
“(Ryan’s) future is so uncertain . but I know that it’s so important for us - especially him - to see that Miles is going to be OK,” Ashley said.
Miles will live as normal of a life as possible for the recipient of an organ donation.
“Of course there are days that are harder than others, but so much good has come from all this,” Ashley said. “We have met so many incredible people in the cancer world, in the transplant world. Nurses, doctors and other families.”
Perspectives change when faced with the mortality of a child or spouse.
“Last night we went grocery shopping, and I just kept thinking about how nice it was to be out as a family,” Ashley said.
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Source: The (Crystal Lake) Northwest Herald, https://bit.ly/2jSnm9l
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Information from: The Northwest Herald, https://www.nwherald.com
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