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Jon and Heather Aagesen-Huebner and their twin daughters Elle and Paige.

Huebners share lessons learned through troubled times

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A bestselling book, "Don't Sweat The Small Stuff," reminds us to "treasure ourselves and the gift of life."

A hit song asks that we "never take one single breath for granted."

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Easy to read. Simple to hear.

Jon and Heather Aagesen-Huebner have found that both provide wisdom to live by.

Within two short days following a visit to the emergency room with a nosebleed in May 2009, Jon was diagnosed with Acute Myeloid Leukemia.

"I remember thinking a lot of other people had beat cancer and there was no reason I couldn't beat it," said Jon.

Jon's wife Heather was on bed rest and in the middle of a very difficult pregnancy with twins.

"I also remember wanting to make sure I was there for the birth of the twins and to help care for them as they began life in this world," he said.

"I distinctly remember leaving Jon at the hospital that first night and sitting in the car in the hospital parking lot at 3 a.m. thinking there was a chance I could lose Jon and the babies," said Heather. "I was terrified I was going to go from a life with my presumed family of four to a family of one."

Acute myeloid leukemia is a cancer of the bone marrow and the blood. AML is a rapidly progressing disease that affects mostly cells that are not fully developed. These cells cannot carry out their normal functions.

Jon's first round of high-dose chemotherapy failed to put him in remission so he had to undergo a second round. The chemo, designed to kill all fast-growing cells, also created a number of side effects, including dangerously low white blood, red blood, and platelet counts that kept Jon in the hospital for nine weeks. He lost 70 pounds and had a number of complications. He spent this and each subsequent hospitalization in the isolation wing of the cancer ward because he was at such high risk for infections due to a virtually nonexistent immune system.

In the middle of Jon's nine-week hospitalization Heather was hospitalized a couple of floors down from Jon with pre-term labor. Contractions were one to two minutes apart. Following her release from the hospital, Heather was on full bed rest with complications from her pregnancy.

"Family and friends would drive me to the hospital, deposit me in a wheel chair, and then wheel me to Jon's room," Heather said. "We were quite the pair. You know things are bad when hospital staff and other cancer patients and their families comment on how tough our situation was. Family and friends would be pushing me down the hospital corridors and random hospital staff would stop to ask how we were doing. Somehow our story had made its way through the hospital and Fairview Southdale isn't a small place."

A positive chapter

Shortly after Jon's first release from the hospital, the Huebners consulted with the University of Minnesota regarding a stem cell transplant.

"Jon's doctors determined that additional chemotherapy was the recommended treatment because stem cell transplants are incredibly dangerous," said Heather.

Jon was admitted for in-patient high dose chemotherapy three more times between September 2009 and February 2010, and multiple times to combat infections and other serious side effects. In between chemotherapy treatments, Jon would have blood checks about three times each week.

At many of these appointments he would receive red blood cell or platelet transfusions to ensure his blood counts stayed at a safe enough level for him to be out of the hospital.

The Huebners' story, which has evolved from hospital visits to life as a family in Eagan, Minn., has at last a positive chapter.

Jon is now in remission.

"We count Jon's two-year remission date as June 13, 2011 (the date his last bag of induction chemo was finished)," Heather said. "We officially received notice of remission on June 23. His last round of consolidation high dose chemotherapy treatment was in February 2010."

Support from all corners

Twins Elle and Paige, now 22 months, were born by emergency C-section on Aug. 4, 2009.

"Jon was able to attend the delivery," Heather said. "The girls spent about a month in the Neonatal Intensive Care Unit and for the first nine months of their life we had to keep them in isolation at our house because their immune systems were so weak."

Throughout, "we received an amazing amount of support from the Morris community and we will never be able to adequately express our thanks," she said. "It was one of those times that you realize how special it is to have grown up in a small tight-knit community."

Jon, son of Ralph and Mary Huebner of Morris, is a 1995 graduate of Morris High School and received a bachelor's degree in management from the University of Minnesota, Morris in 2003.

Heather is a 1995 graduate of Paynesville High School. The daughter of Steve and Sue Aagesen of Paynesville, she received a bachelor's degree in economics and political science from UMM in 1999 and is a Masters of Public Administration student at the University's Humphrey School of Public Affairs in Minneapolis.

"I didn't grow up in Morris but I did go to college there and then worked for three years at the campus' Center for Small Towns," Heather said. "I've always felt like Morris was my second hometown.

"The Morris community, including the extended Huebner family, was incredible and numerous individuals and organizations supported us," she said. "We received notes, emails, prayers from individuals, and Morris business, University and faith communities supported benefits that helped defray our medical costs."

Friends, family, co-workers and neighbors in the Twin Cities metro area also helped in countless ways, including caring for the Huebner's Eagan home and holding a benefit.

Ralph was on the road alot during the first part of Jon's treatments, said Mary Huebner.

"He and Jon were always close, so it was especially hard on them," she said. " Ralph would stop and visit if time allowed, however he would call me and be my support."

More support came from all corners of their world,

Mary Huebner said.

"I will never forget the day of Jon's benefit here in Morris," Mary Huebner. "Jon was finally discharged from the hospital for the first time. It wasn't that he was in remission, but at least he was able to go home. That was probably the best therapy any of us could have had. We knew that from that point on that anything ahead was surmountable. We could do it!"

Heather's parents also stepped in to take care of business when neither Jon nor Heather was able.

"My parents basically moved in with us for the better part of the year, starting when Jon was first diagnosed and ending in roughly March 2010," said Heather. "They took care of me and our house while I was on bed rest and after the girls were born, they took care of the girls so I could work while keeping the girls and Jon exposed to as few germs as possible. All three had suppressed immune systems so keeping them as isolated from germs as possible was critically important."

The Huebners also received some organizational support from the Spare Key Foundations, an organization that provides a one-time mortgage payment for families with seriously injured or critically ill children, and the Leukemia and Lymphoma Society.

Additionally, there was the continued care and support of medical personnel: Dr. Thurmes and the staff at Minnesota Oncology; nurses at Fairview Southdale Oncology Ward and The Leukemia and Lymphoma Society.

Giving back

The Huebners say that words of gratitude will never be able to fully express their feelings toward those who supported them.

"Accepting assistance wasn't easy for us and the best way we know to recognize the generosity and support we were given is to continue to pay it forward to others in need," Heather said.

As part of their efforts, the Huebners are hosting a wine tasting fundraiser this weekend.

In September, Jon will run a marathon to raise funds and awareness for the Leukemia and Lymphoma Society through their Team in Training program. Team in Training is the largest fundraising arm of The Leukemia & Lymphoma Society. The Minnesota chapter's Web site is www.teamintraining.org/mn. The chapter has three seasons per year and offers training for full and half marathons, cycle century rides, duathlons, triathlons and cross country skiing.

"I highly recommend the TNT program to anybody who is interested in trying to do any endurance event," said Jon, who trains six days a week. "Participation in TNT puts a face and a connection on blood related cancers. Participants can achieve their goal by helping people fighting for their lives."

The Huebners also volunteered to serve as a 2010 Spare Key family and continue to serve in a volunteer capacity.

"We keep our eyes open for people in similar situations as ours and lend support in any way we can,"

Heather said. "One of these is Jon's honorary teammate."

Heather is also assisting a friend to organize a "Be The Match" bone marrow donation drive in August. Jon didn't need a bone marrow or stem cell transplant but the survival of many cancer patients depends upon finding a donor, she said.

To become a donor at Heather's event or mail order a donation kit visit www.keeponkeepinon.org/home/donors

Those who would like to help the Huebners meet their fundraising goal for the Leukemia and Lymphoma Society can donate by Visa or MasterCard online at Jon's Team in Training Web site at the address http://pages.teamintraining.org/mn/ kauai11/jhuebne7c2.

Checks can be mailed to: Jon Huebner, 4093 Vermont Ave., Eagan, MN 55123

Make checks payable to: "LLS" and write "Jon Huebner" in the memo line.

Lessons learned

If there is a prologue to the Huebners' story, it may be titled "Lessons Learned."

"I've learned that as much as I want to control life, many of the events that shape our lives are out of our hands. This has been an incredibly hard lesson for me to learn and I still have problems accepting it," said Heather.

"Prior to Jon being diagnosed we were always future focused," said Heather.

"We now take a more active approach toward living for today while planning for tomorrow," said Jon. "We do a much better job of capturing opportunities and living life rather than just letting life happen. Cancer does not define who I am as an individual. It was something I had, not who I am.

"We both do a better job of not sweating the small stuff - have a better understanding of what is really important in life and to concentrate on those things."

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