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Creating a lifeline: Community reaches out to Johnson family

abby and andy johnson

Abby and Andy Johnson are part of a classic love story. They grew up in Star Valley but didn’t start dating until a few years after high school.

“We officially met through my little brother in the summer of 2005 – although we knew each other beforehand as we’re both from Star Valley,” Abby said. “I had recently moved back from Utah and he was home for the summer from Carroll College in Helena, Mont. In 2006 his job took him all over the country so we took a little hiatus until 2008 when my son and I moved to Atlanta with him. From there we moved roughly every year – from Atlanta to Columbia, S.C. to Salt Lake City to Denver and then to Star Valley in August of 2012.”

“It was during our time in Atlanta that he popped the question.  We were on a Bahamas cruise that he had surprised me with for Christmas. We were married on June 25, 2011 in my grandparents back yard in Afton. He had swept me off my feet from the beginning and I’d announced to my friends and family early on that I was going to marry him! It just took a while – and it was perfect, so we wouldn’t have it any other way.”

“When we moved back to Star Valley, Andy went to work in the oil field and I’ve continued to teach group fitness classes for Lifetime Fitness in Afton. We bought our first home last spring (2013) and have been living happily ever after in small renovation bliss!”

SANYO DIGITAL CAMERA“Andy is an amazing step-father. He is truly the most patient and generous man I know. Treyson and I could not have gotten luckier.”

Like most young families, the Johnsons love to play together.

“We love summer and sunshine and water,” Abby said. “And vacation. Although we don’t do it often enough. In spring 2012 we took a vacation to Florida where Treyson ruled the roost for a couple of days in Orlando. Treyson had been dying to see the dolphin Winter from Dolphin Tale, so Clearwater, Fla., was an obvious stop. We spent several days on the beach with family and had the time of our lives.”

They also love to work together.

“Andy and I have been loving the small reno/update projects we’ve been doing on our lovely old house,” Abby said. “We make a pretty good team — most of the time. I’m the shopper/picker-outer of beautiful (and sometimes nearly impossible) things and designs, and he’s the make-it-happen guy!”

As for future plans, the Johnsons would like to open their own business — someday.

“We are both very indecisive – neither of us know what we want to be when we grow up!” Abby said. “But we both have very entrepreneurial minds, Andy maybe a bit more than me. In the future we’d love nothing more to have our own successful business. When the right opportunity/idea comes along, we’re going to be all over it.”

Portraits117Life for the Johnsons was really pretty typical, until this last fall. That is when Abby noticed something was wrong with her husband.

“In October Andy came home from a hitch at work  in Douglas and I noticed that he looked a bit jaundiced – something that I didn’t know even happed to adults,” she said. “He was super itchy all over. Up to that point he had experienced random bouts of nausea and vomiting, but we made no connection. I made him an appointment with our family physician, Dr. Morgan,  who has been great!”

An ultrasound revealed a stricture in Andy’s bile duct. Dr. Morgan referred him to a gastroenterologist in Idaho Falls.

In Idaho Falls, Andy had an Endoscopic Retrograde Cholangiopancreatography (ERCP) done to allow for some more detailed imaging to take place.

“They placed a stent to open up the stricture and assist with the bile flow. This relieves the jaundice symptoms and itching and helps with digestion, etc.,” said Abby. “The Idaho Falls doctor then referred us to the Huntsman where they did another ERCP in November and replaced the stent with a larger one. At this point they were fairly confident that it was bile duct cancer. They explained that it is very hard to get a clear and conclusive biopsy result because of the tumor characteristics and because they are unable to use traditional methods due to liver transplant specifications.”

“The Huntsman turned out to be outside of our insurance network so we were then referred to Intermountain Medical Center where Andy is currently being treated.”

The results from both of the ERCPs were inconclusive and a third ERCP was done  on Dec. 4.
“It was this ERCP that revealed the malignancy and resulted in the official diagnosis of cholangiocarcinoma (bile duct cancer) on Dec. 10, 2013,” said Abby.

As if the diagnosis were not devastating enough, Andy’s liver was punctured during the procedure.

“The puncture caused many and severe complications,” Abby said. “He spent a few days at SVMC, was life flighted to IMC, spent two days in the ICU, and then an additional week on the transplant floor for recovery.”

“It was crazy before the official diagnosis. When it finally came we were unfortunately expecting it and had had some time to absorb and learn many things about the disease. Much of the time directly following the diagnosis, Andy was recovering from the puncture and was still in pretty bad shape overall. He has not yet made a full recovery but is getting very close. We are working with oncologists and a liver transplant team to ensure he has the best treatment. The highest success rates for BDC is with a liver transplant. He is undergoing radiation therapy and chemotherapy to shrink the tumor and then a maintenance chemotherapy to inhibit any growth while waiting for a liver. He actually started chemo/radiation [this week].”

“Obviously, a serious illness gives you an entirely new outlook on life. It puts things into perspective and makes you realize what is really important. Our priorities have certainly changed. We’ve learned that time really is the most valuable thing we have and how we spend it is up to us — less computer/housework, more hugs and undivided attention to our loved ones.”

As the Johnsons scrambled to deal with the health issues Andy was facing, insurance issues started to arise.

“Since the diagnosis our insurance issues have caused a terrible and very persistent headache,” Abby said. “We found out on Jan. 8 that our insurance company terminated our coverage and retro-actively dated it back to Dec. 1. We currently have no coverage and are seeking out new coverage at this point.”

“The liver transplant team actually referred us to the Mayo Clinic following the diagnosis, but due to the coverage we had, we were unable to proceed with that. At this point it is irrelevant because of our lack of insurance. But when it comes time to make decisions on a transplant, we may use Mayo if it seems like the right place to be.”

The liver transplant process is very different for each illness, Abby said.

“For Andy, the plan was to go through the first two rounds of chemo/radiation and then place him on the list for transplant (roughly two months after treatment begins),” Abby said. “This has been the standard protocol for BDC. However, we just learned this week that they are able to list him early.   The criteria for BDC transplant is very strict. In Andy’s case, because the cancer was found early and because he doesn’t have any underlying liver diseases, he should not have any trouble with eligibility. However, we have been informed that the puncture has potential to disqualify him from transplantation. This is because, technically, the hemorrhage could have leaked cancer cells into other parts of his body since the instrument went directly through the affected area and through the liver wall/capsule.”

For now, the Johnsons will continue treatment and wait for a liver to become available. According to Abby, the wait can be anywhere from six to 18 months. The average wait time is a year, she said.
“When a liver becomes available Andy will have roughly four hours to be in Salt Lake City and ready for surgery. There is no way of knowing when this will happen. You just have to be available. At this point Andy is being listed at IMC, but we are still considering the Mayo Clinic if it can be worked out and if the doctors would prefer that. The Salt Lake City team has agreed to do the transplant since the Mayo is out, but originally thought it best that he be transplanted there due to the puncture complication.”

According to Abby, through the whole process, she and her family have clung to the lifeline that is family and community.

“We have such an amazing  group of friends and family that have done so much on our behalf,” she said. “They have put together an online donation site, a raffle, Andy’s Army bracelet fundraiser and an upcoming benefit on Feb. 8.”

The fundraiser is set to take place at the Thayne Community Center and includes a poker tournament, lunch, silent auction and raffle.

“I am not involved with much of the planning and details, but I know there are many areas in which people can contribute,” Abby said. “I would direct those that are interested in helping to Anna Jaques (307) 880-0444, Sandie Truchot (307)654-1941 or Jennifer Astle (307) 880-6013. And of course, prayers, positive vibes and the like are needed and felt!”

“I honestly can not imagine going through this without the incredible support system that we have. The selflessness, generosity and compassion is beyond comprehension. There is not a single day that it goes unnoticed or unfelt – our community is simply phenomenal. We have been overwhelmed with love and support and we deeply appreciate all of it. The emotional support, the financial support, the meals, the help with Treyson, the help with our house, the prayers and the time. It’s all amazing. There is nothing that can replace the knowledge that an entire community is behind you. And the best part is knowing that it’s all sincere.”

RSS Feed for This Post4 Comment(s)

  1. Allison | Jan 27, 2014 | Reply

    Can the Independent publish a website for those of us living outside the valley to help via donation?

  2. Independent | Jan 27, 2014 | Reply

    http://www.youcaring.com/medical-fundraiser/help-the-johnsons/115763

  3. Liz Clark | Jan 27, 2014 | Reply

    Our love and prayers are with you. Hang in there.

  4. Brad K. | Jan 29, 2014 | Reply

    I hope the Affordable Care Act offers some relief. Pre-existing conditions are no longer a factor in insurance rates and the Johnson family should be able to obtain coverage!

    Wishing the best to Andy and his family as they endure this.

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