Nathan’s Story: illness, struggle, hope

Former MCCC student Nathan Hays and his mother, adjunct instructor Terri Gower,  hope for a future of health and happiness
Photo by Mika Kotanova

Life hasn’t been easy for Nathan Hays and Terri Gower, but one doctor appointment turned their world upside down.
“I felt like my whole life had just gone away,” Gower said.
She had just heard that her son, Nathan, would be adding cancer to the already overwhelming list of obstacles he faced.
“You go to the doctor and they tell you your liver is dying, you need a transplant, and you have cancer in your liver, too,” Gower said, recounting the story of Nathan’s recent diagnosis.
Gower is an adjunct instructor at MCCC, where she has taught for 13 years, and Nathan is a past and possibly future student.
The prospect of a liver and possibly a pancreas transplant has raised financial issues for the family.
They have been able to raise $12,345 in donations in one month to help offset the medical costs.
Nathan has been battling his health for as long as he can remember.
He was diagnosed with Cystic Fibrosis just before he began first grade.
“We were in for an ultra-sound and everyone came in. It wasn’t just a tech –  everyone in all of UM in that department came in,” Gower said.
Cystic Fibrosis (CF) is a genetic disease that affects the body’s ability to transport salt. This can lead to a mucus buildup that coats the lungs, pulmonary problems, blocked pancreas, digestive problems, and liver failure.
At the time of Nathan’s diagnosis, the expected life span of a CF patient was mid-20s. It is now around 40 because of medical advances and technology. During the eighth grade, Gower thought that Nathan was going through regular teenage issues.
In reality, his body was becoming chemically unbalanced because his liver had failed.
He was rushed to the hospital, throwing up blood, and was life-flighted to the UM hospital.
The veins in Nathan’s throat had burst and he was bleeding to death.
After a week in ICU, surgery every six weeks, and being evaluated for a liver transplant, his liver began to regenerate.
However, Nathan wasn’t out of the woods.
While in ninth grade, he was diagnosed with diabetes, just one of the many complications that can accompany CF.
Taking insulin shots for diabetes and enzymes every time he ate made Nathan’s life frustrating, so after the ninth grade he left high school.
He got his GED and began attending MCCC at 18.
He enrolled with less than a clue of what he wanted to do, but he began to find his way.
Professors fell in love with so many things that Nathan brought to the table.
“Nathan was the kind of student I could always count on to contribute something to the class that no one else had thought of,” English professor Carrie Nartker said.
“He’s quirky in the best way.”
It was because of Nartker that Nathan found his knack for writing.
“Nathan’s contributions to class discussions stand out to me.  His way of looking at literature, and the world in general, often made the rest of us stop and think,” Nartker said.
Nathan put his writing to use, also finding an interest in journalism.
He worked on The Agora staff, and has actually thought about pursing journalism professionally.
Along with The Agora, he was also active in Professor Mark Bergmooser’s speech and Tae Kwon Do courses.
“In speech, he had a vibrant personality, tons of spirit.  He brought some of his own unique insights and talents to every class,” Bergmooser said.
“In Tae Kwon Do, he did the same, only it was through physical determination. Despite his illness, he rarely let it show and always worked hard.”
Life was looking up – until January of 2012.
After having friends over to ring in the New Year, Nathan wasn’t feeling well.
His mother figured it was from a lack of sleep.
That was until an all-too-familiar thing happened – throwing up blood.
He was rushed to Ann Arbor on Jan. 2, 2012, and had five procedures in 48 hours.
Because of the bleeding, Nathan underwent several blood transfusions, along with a procedure to place a stent in his liver to bypass arteries and stop the bleeding.
While this solved the immediate problem, it also caused more complications.
At that point he had no filtration through his liver, which meant his body wasn’t filtering out toxins, and more medications were necessary.
Because of these toxins, Nathan has suffered from severe ammonia poisoning several times, which can result in lasting damage to the brain.
Ammonia poisoning affects a person like a short-lived Alzheimer’s episode.
“You don’t know who anyone is, your vocabulary is about three words, you lose motor skills, and you don’t know what’s going on,” Nathan said.
While in the hospital last June, Nathan, who has been using computers since he was 3, thought his computer had died. In reality, he couldn’t figure out that the monitor was just turned off.
These episodes are both frustrating and dangerous.
“Coming from someone who was a strong writer, was in journalism, started out to be a writing fellow, and can’t come up with words anymore – it’s concerning,” Gower said.
“He is losing parts of his memory.”
Nathan will often mix up words and say things that don’t make sense without being conscious of what he is saying.
“I know what word I want to say, but I can’t think of the actual word. My mouth will say things without going to my brain first,” Nathan said.
He has continued to be ill and on antibiotics since the incident in 2012, because his immunity has been so low.
He was unable to return to classes that winter, and has been too sick to return to MCCC since.
He also had to give up Tae Kwan Do, because of the contact, along with Dagorhir, which is live-action sword fighting.
Nathan still keeps in contact with some of his professors.
“Every day with Nathan was memorable,” Bergmooser said.
“He knew so much and always shared what he thought. When challenged by other students, he challenged them right back, always respectful.
“Nathan is one of those students I think about regularly, and when I do, he is always smiling.”
The stent in Nathan’s liver was estimated to last ten years, and after ten years it could be replaced. But not even two years later, the stent has failed
and the process of evaluating him for a liver transplant has resumed.
As if not being able to return to classes, and being evaluated for a transplant wasn’t enough, the bad news just kept coming.
Last June, ultra-sounds and MRIs found a spot on Nathan’s liver. A follow-up MRI in August confirmed that it was cancer.
“I couldn’t do anything for about three days,” Nathan said.
“My brain just couldn’t handle any more.”
There was no time for shock, because in order to get a transplant there are several things that have to be checked off the evaluation list. You have to be approved for heart, lungs, and dental before you can receive a transplant.
Nathan was held up by a procedure that is routine for most people, but not for a high-risk case like his.
Before he could have a transplant, he needed to have his wisdom teeth removed.
After three different referrals, Nathan had his wisdom teeth removed with a full OR procedure.
“Cancer is a ticking time bomb; you don’t take any more time than you have to,” Gower said.
While checking off the list for transplant evaluations, there have been complications in planning Nathan’s cancer treatment.
Nathan has a team that includes a doctor, a coordinator, a surgeon, a financial advisor, a social worker, a dietitian, and a nurse who together decide on his treatment options.
The first plan was a procedure where the doctors would burn the cancer out of Nathan’s liver; it was decided that was too high risk.
Next was isolated chemotherapy, where chemo would be delivered through the veins in Nathan’s leg to his liver to isolate only the cancer cells. Again, it was decided this was too high risk.
Finally, it was decided and Nathan had orientation for radiation treatments on Sept 23.
As for the transplant itself, it’s a whole other waiting game.
“It’s in their hands, not ours,” Nathan said.
UM alone has around 150 people waiting for livers, and they draw from the same pool as Oakwood and Henry Ford Medical Center.
They use something called a MELD score, based on patient blood work, to rank transplant recipients on a list.
The score can range from 0 – 40.
A score of 15 gets a patient on the transplant list. A score in the mid- to-low 20s usually means a person should receive a transplant.
If a person has a cancerous tumor like Nathan’s, once the tumor is a certain size, their score is automatically 22.
After three months, if they still haven’t received their transplant, the score is increased to 25.
The recipient has to be matched with a donor based on both their blood type and body size.
“One of the biggest factors out there is donors,” Gower said. “People need to sign their donor cards.”
They have decided against the option of using a live donor for Nathan’s transplant.
This is done when the surgeon removes 60 percent of someone’s liver for the transplant, leaving the remaining 40 percent. Both livers regrow to be about 80 percent.
While this is possible, it is rarely done, partially because insurance then has to pay for the recovery of two people.
Several people have been willing to do the procedure for Nathan, but it is a tough decision.
“It would be hard to put someone in a situation where they might sacrifice their life for yours,” Nathan said.
Gower has considered giving Nathan part of her liver. The doctors don’t recommend it, because if something happened to her during the surgery, Nathan would lose his support system.
“I would love to say ‘take my liver, I’ll save your life,’ but I’m scared that if something happened to me, there would be the guilt he would feel, and someone has to be around to take care of him,” she said.
Nathan’s girlfriend, Ashley Parton, also would be willing to do a live donor transplant, but there is the same “what if.”
Dealing with CF, along with the transplant process, is very costly. “I have to take 14 pills and two shots before eating breakfast in the morning,” Nathan said. The enzymes alone for every meal are about $30.
“We could be eating filet and lobster tail every meal for that,” Gower said.
Being an adjunct professor, Gower doesn’t get any sick pay or health insurance to pay for the procedures, the hospital stays, and medical co-pays that will follow the transplant.
Nathan and his mom started a fundraising page, using gofundme.com.
They have been sharing it with anyone and everyone they could think of.
The goal was set at $12,000. This was to cover Gower taking time away from work because Nathan will need round-the-clock care for a month after the transplant.
It also would help with expenses of a hotel in Ann Arbor while Nathan is in the hospital for the transplant, as well as for co-pays.
While that was the original goal, more financial burdens have been placed upon them.
Nathan’s wisdom teeth procedure was much more expensive because of the high risk and need for a full OR operation, and they have no dental insurance. Nathan also has been denied disability by the state of Michigan. They have a court case in November to fight that decision.
In just over a month since the fundraising page was launched, they have surpassed their original goal of $12,000.
“I didn’t expect to be where we are with the funding, but it’s been work,” Gower said.
The fundraising has been eye opening for both Gower and Nathan.
“Getting donations from total strangers is mind boggling. Especially when they are $100 donations; we had a friend of a friend donate $1,000,” Gower said. “So many people are saying that there are so few good people left in the world, but we have total strangers saying ‘you need this money more than we do; take care of yourself, I hope you get better.’ ”
“Nathan is a likeable guy who never wallowed in self-pity, so it’s no surprise that when he needed help, so many people were there for him,” Bergmooser said.
Nathan said that the music scene has really been his biggest supporters. An Industrial band gave Nathan VIP passes, let him come backstage before the show, and has been plugging his campaign.
Gower spent a majority of her life doing volunteer work.
She was president of a co-op preschool in Monroe, vice president of a nonprofit organization out of Toledo that gave teddy bears to traumatized children, and has also been involved with the VFW auxiliary.
People are telling her it is now being paid back to her.
After the transplant and recovery, Nathan would like to return to MCCC and transfer, hopefully to EMU.
“I want to have a degree in marketing or journalism,” Nathan said.
Terri has a hopeful outlook for a bright future for her son.
“I just want him to get the transplant, recover from it and have somewhat of a normal life,” Gower said. “He hasn’t had a normal life since he was 13.”