Fitchburg Star - 8/8/2014

Filling up on hope

Former True Coffee employee sees outpouring of support

Samantha Christian

Unified Newspaper Group

Kyle Morgan was training to become a firefighter at Madison College when he began to experience strange symptoms this spring. His focus quickly shifted from battling blazes to fighting a disease with no known cure.

The 25-year-old husband and father from Madison was diagnosed with a rare type of kidney cancer called renal medullary carcinoma (RMC). Since his diagnosis on May 6, the Stage IV cancer has spread to his lungs, brain, spine, bones and lymph nodes.

“My birthday is May 1, so it was like a depressing birthday present,” he said. “It’s weird, because once I was diagnosed, that’s when all the pain started.”

Since this particular type of cancer has not yet been researched as extensively as other cancers, Morgan needs to seek experimental methods of treatment out of the area that his insurance won’t cover – and even those offer no guarantees.

“Everything that they treat me with is guesswork, because they don’t know how to do it or if it’s going to work or not,” he said.

His family is asking for support so Morgan can pay for treatments like chemotherapy and possibly travel to Houston to meet with the country’s leading specialist in RMC.

Katie Fortney, a good friend and former coworker, wanted to help him fill that tall order. Morgan used to work with Fortney at True Coffee Roasters in Fitchburg a couple of years ago before he left to go to school.

“My husband and I sat down and thought about it, and I was like, ‘If we were in this position, I know that Kyle would do it for us,’” said Fortney.

Fortney decided to organize a family carnival fundraiser for the community on July 20 with the help of her co-workers and other area businesses.

“We both have children (and) the majority of our staff and a lot of customers that come here have young children, so it just fit,” she said. “I just felt like (what) he’s going through is such an unfortunate thing, but we had so much support from our regulars and from the community out there that it just made sense.”

The outdoor carnival was held in the parking lot on Nesbitt Road and drew a crowd of nearly 75 people. Among them were Morgan, his wife, Anna, and their 2-year-old daughter, Alivia, enjoying the beautiful day as a family. It was a welcome break from the time they spend worrying about what ifs and doctor visits.

Families could purchase raffle tickets to participate in the games and events, with all of the proceeds going to Morgan. It’s Your Party set up a bouncy house, games and mini golf course, the Fitchburg Fire Department made an appearance with its fire truck for kids to explore and James the Magician performed a magic show. There was also music, face painting, sack races, a water balloon toss, cake walk and raffle.

Inside, the coffee shop donated 50 percent of its cafe sales and all of the tips to Morgan.

“Nobody was taking tips inside – everything that (got) put into cups will be donated to him, as well,” said Fortney. “I saw a couple hundred-dollar bills in the tip cups alone, so that’s a really good start.”

In total, True Coffee Roasters raised $2,971 for the cause.

Although Morgan no longer roasts beans, numerous customers approached him at the event and wished him well, remarking how friendly he was behind the counter – always smiling and saying hello.

“I’m really happy that (Katie) did this, and I’m really thankful for her. It’s nice that I got to know so many people while I was working here, because when they found out what happened to me they were quick to offer their support. So it’s great that people here are able to help in ways that a lot of people I know can’t,” said Morgan.

Lucky accident

Morgan’s diagnosis was the result of a lucky accident. Earlier this spring, Morgan had sustained injuries from working out, including a dislocated shoulder and what he thought was a sprained rib.

Doctors took X-rays, but they originally missed what was really behind his back pain – a tumor.

On May 5 he went into the ER because he noticed blood in his urine. At this point he and doctors were still not aware of the tumor.

“After all these injuries I was having back-to-back, they finally gave me a CT scan,” he said. “They said (my) lymph nodes (were) swollen and that’s probably pushing against (my) kidneys.”

The doctors gave him pain pills, but the next day they called his wife while he was at school.

“They said, ‘You need him to come back in, we missed something in the scans.’ And of course when they said that it was all panic and we were freaking out a bit,” he said.

Morgan went back in so doctors could perform another CT scan.

“I pretty much knew what they were going to say at that point, but they told me that it had spread everywhere,” he said, including in his pelvis, lungs, brain, joints, shoulders and hips. Walking had become very painful for him for almost a week, but he is feeling better now.

Doctors have since used radiation to shrink the tumor on his rib.

“It at least stopped the pain, which was all I was really hoping for, because I couldn’t sleep at night,” he said. “It was really a blessing in disguise – hurting myself – because it forced me to go to the hospital.”

Searching for hope

Morgan has traveled hundreds of miles and visited with multiple specialists from UW Health, Mayo Clinic, Aurora and Wheaton Franciscan, but doctors say there is no cure.

According to an article in “The American Journal of Medicine,” as of 2009 there have been approximately 120 reported cases of the disease, which occurs almost exclusively in adolescent and young African American adults with sickle cell trait or sickle cell hemoglobin SC disease.

Morgan is currently undergoing chemotherapy treatments to slow the spread of cancer, but he said they were actually designed for bladder or pancreas cancer.

“If it is helping, then I will continue with the same chemotherapies, and if not then I’ll try something else. That’s what our main issue is right now, because they don’t know what to treat me with,” he said.

“I (want) to go to Texas, but it’s $20,000 just to get in the door at MD Anderson, and that’s not including what the treatment costs will be or staying in hotels and (taking) flights,” he said. “We are keeping that option open, but it’s not at the top of our priority list just because we can’t afford it. That’s why we’re raising money, to see if we can possibly go down there.”

In the meantime, Morgan has been seeing a naturopathic doctor who recommended he take vitamins to increase certain levels in his body that will help with the chemo.

“I’ve been trying to find the natural remedies and alternative methods because I know all the praise that they get online. Plus, we’re pretty much holistic at home anyway. So we’ve been trying to lean on the vitamins and eating certain types of vegetables (and) organic and trying to be healthy,” he said. “That’s pretty much my best hope at this point, because the doctors keep on saying that they don’t know if the chemo’s even going to work, and these low success rates they keep hitting me with.”

When Morgan first typed in his cancer into the search box online, the results were anything but hopeful – with some people only living for a couple of months. He has since discovered a flip side to the web. Although his disease is rare, he’s met a few people through the Internet that understand what he is going through.

“This woman I’ve been talking to, her brother has the exact same cancer as me. He got diagnosed two years ago, which is really good to hear,” said Morgan. “I’ve heard about others passing, (but) I’ve heard about others who are surviving.”

Morgan has been keeping in touch with the woman and her brother over the last few months to ask questions about remedies and treatments. They also told Morgan about the cancer center in Texas.

“But now I’m kind of giving recommendations, too, like with the vitamins and how I feel like it’s really helping me out. So we kind of work off of each other now,” he said.

Mostly, they act as an incredible support system for each other in these times of uncertainty.

While Morgan understands the reality of his situation, he’s not about to let it control his life. He plans to return to school in the fall and spend his time with those who mean the most to him, especially his wife and daughter.

“I don’t want to have a countdown (and) see if I make it past it or not. It’s something where if the worst does happen, I just want to be able to live my life and enjoy every day that I can,” said Morgan.

“I definitely did not ask (the doctors) how long I have. It’s not something that I want to know, because I plan on beating it anyways,” he added with a smile.

How to help

Donations: Checks can be made out directly to “Kyle Morgan” with “benefit” in the memo line and sent to any UW Credit Union or on Team Kyle website

Fundraisers: Upcoming events are listed on the Facebook page Kyle Morgan Benefit