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‘I am grateful we chose hospice’

High school sweethearts Ryan and Ashley Wagner always knew they were destined to share a life together.

They married right out of school and, after more than a decade together, discovered in 2013 that they were expecting a child. A week later, Ryan was diagnosed with colon cancer and doctors told the Woodridge couple that surgery was not an option.

Ryan began chemotherapy and, soon, their son Miles was born. But eight weeks later, the infant suffered a seizure. Doctors learned Miles was in end-stage kidney failure and diagnosed him with a rare disease called primary hyperoxaluria, which would require both liver and kidney transplants.

As the Wagners navigated medical treatments for both father and son, they shared their experience on their “Team Ryan” Facebook page using the hashtag #teamryanstrong. Their unique story earned them coverage in publications like Today and on local news like WGN TV Chicago, ABC 7 Chicago and, most recently, the Eric & Kathy Kids fundraiser by the former radio duo on The Mix 101.9 FM.

It was because of their public sharing that, after first receiving his liver through traditional organ donation, a high school classmate of the Wagners came forward in 2016 to donate her kidney
to Miles.

Today, Miles is 3 years old and his health is stable. But as Miles hit a plateau, the Wagners made an important decision about Ryan’s care. He had completed more than 70 rounds of chemotherapy, along with immunotherapy, yet treatments were neither halting the cancer or reducing its progression. They also caused Ryan additional health problems, like colitis.

Ryan and Ashley celebrate their son Miles’ third birthday this summer, which they say was possible once hospice care with JourneyCare improved Ryan’s quality of life.

“Eventually it felt like the chemo was going to end his life faster,” Ashley said. “We had a choice to move on to clinical trials, which would bring a lot of uncertainty and travel, or to stop. For almost three years it has been dialysis five days a week for Miles and chemotherapy biweekly for Ryan. Our whole lives revolved around treatment and often the two of them were separated for long periods of time.”

The couple made their choice after Ryan faced a challenging recovery from surgery to remove a tumor, which was meant to improve his quality of life. But the recovery proved more difficult than the Wagners anticipated, with Ryan experiencing severe weight loss and his debilitating pain growing.

“I could either be admitted to the hospital for pain or go into hospice. I didn’t want to go back to the hospital, but the pain was taking so much of my energy and stealing time I could be spending with my family,” Ryan recalls.

Ashley and Ryan celebrating their anniversary in downtown Chicago this summer. The couple says they chose JourneyCare to help them ‘live life and make memories’ like this.

“We decided we would rather live, experience life and make memories,” he added.

Ryan and Ashley chose JourneyCare to help make this happen. Their JourneyCare team created a care plan to manage Ryan’s pain, allowing the couple to avoid unnecessary trips to the emergency room and long doctor visits. Instead, they could now focus on being active with Miles.

The Wagners say the combination of pain management, along with care and medical supplies being provided during home visits from the care team, have allowed them a new freedom and better quality of life.

“We used to wonder about Miles’ birthday – would Ryan make it until then? If he did, could we celebrate?” Ashley says. “Because of hospice, this summer we were able to have a big party to celebrate his third birthday.”

Ryan and Ashley were also able to celebrate their anniversary at a restaurant on Chicago’s Magnificent Mile, share practice runs for the Chicago Air and Water Show with Miles, and take their toddler on local outings, too.

Ashley, who is part of an online support group for young wives whose husbands are living with cancer, has been using social media once again to share her journey – this time about hospice.

“The women in my group are always saying thank you for explaining hospice on our page, because many of them know it is a choice they will face, too, and they want to be informed.”

The Wagners say they have learned that hospice is not a topic to fear. More importantly, they add, hospice care should be chosen as soon as possible – not just in the very last days of life.

“I am grateful we have started hospice. It can really add value,” Ashley says.

 

– By Elisabeth Mistretta, JourneyCare Content Specialist
Originally published in Together to Care, Issue 3, 2017

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