Strong in Every Sense of the Word

Emma (9), Kasey, Eden (4), Anna, Ethan (7) (Photography by Ally Frantz Photography)

The Strong family didn’t know what was wrong with Ethan, but they knew something was wrong.

“He wasn’t eating, his eyes were sunken in and he was always in pain from arthritis,” said Anna, his mother. “He is tough to summarize because he’s undiagnosed.”

The nature of Ethan’s medical condition led the family to Mayo Clinic, as he had gone as far as he could go with his hometown hospital.

“Mayo is doing studies on Ethan,” Anna said. “He is paving his own path and he wouldn’t be able to do it as safely at home. It’s remarkable.”

Ethan (Photography by Ally Frantz Photography)

Ethan was born with a rare autoinflammatory disease that is widely undiagnosed. He has battled sickness since he was born and relies on an eating tube for nutritional balance. But, as his last name says, he is strong.

“We have learned so much about Ethan, but he has also taught us so much,” said Anna. “He has fallen apart in grave circumstances and pulled it back together so many times. And he has done it with a smile on his face.

“He has such a loving and compassionate heart. He’s very unique.”

While the Strong family knew a lot about Mayo Clinic and its specialized care, they didn’t know much about the Ronald McDonald House of Rochester, Minnesota and its services. As far as Anna was aware…it was simply a hotel.

“We didn’t know what to expect,” Anna said. “But the House is amazing. And, as strange as it sounds, Ethan looks forward to coming to Rochester because of the House.”

The Strong family spent their entire first trip to Rochester and Mayo Clinic on the waiting list for the House. They spend as much time at the House as possible, even if they know they will not be able to get a room.

“Being on the waiting list is tough,” said Anna. “It’s even more challenging when you have a sick child. We do not go out and about because of his weaker immune system—we need a very clean environment.”

Ethan, Emma, Eden (Photography by Ally Frantz Photography)

Volunteers at the House clean all public spaces multiple times each day. That is only one of the many things volunteers do for the children and families staying at the House.

“It’s a relief for parents,” Anna said. “Everyone has the same goal—provide a safe and comfortable place for children. And the volunteers are so kind. They want to invest in you and your family and join you on your journey. They are so generous.”

And the House community is another aspect Anna values. Kids and parents going through similar situations; “it makes their time not as scary.”

But the waiting list often exceeds 20 families, resulting in many families arriving in Rochester and leaving without ever staying at the House.

The Love Tremendously Hope Exceedingly expansion project is attempting to address the growing need for the Ronald McDonald House of Rochester. When it is completed, it will be the largest Ronald McDonald House in the state of Minnesota with 70 guest rooms and additional community spaces. And the impact will be great.

“It’s incredible,” said Anna. “The toll it takes on a family when they don’t get to stay at the House is exponential. So many costs associated with staying elsewhere. It’s stressful.”

Anna also talked about House Dinners and Mailbox Stuffers as important day-brighteners for a child and family, providing normalcy in an abnormal situation.

Ethan has a bright future, but Rochester, Mayo Clinic and the Ronald McDonald House will always be a part of his life. The Strong family will visit multiple times monthly for treatment. And it’s a “forever thing.”

“There are many unknowns,” Anna said. “We don’t know if it is life-limiting; we haven’t been given an estimation. New research is coming out every day.

“The more we learn about Ethan, the more we can help him.”

And while more trips to Rochester and Mayo Clinic means more treatments, it also means more visits to the Ronald McDonald House, which has become Ethan’s home.

“He loves the House,” said Anna. “We truly enjoy our time at the House. It’s most definitely a home away from home.”

Strong Family (Photography by Ally Frantz Photography)

Truth from Ruth

Ruth (Photography by Fagan Studios)

As Ruth was thinking about the past three months at the Ronald McDonald House of Rochester, Minnesota, a big smile came across her face and she said, “It’s hard to have a negative attitude when you’re surrounded by so much kindness, generosity and good…even when you’re here because you have cancer.”

Two years ago, Ruth suffered a traumatic brain injury that left her with memory loss. Doctors in her hometown did not have answers to her questions and did not specialize in brain injuries, so she journeyed to Mayo Clinic for the Pediatric Pain Rehabilitation Clinic.

After completing the clinic, Ruth returned home, but suddenly suffered from severe pain in her leg. Her doctors said it was either a bone infection…or a tumor. Because her hometown does not have a pediatric cancer unit, she had two options: University of Michigan Hospital or Mayo Clinic.

Because of her history at Mayo and because it “felt like home,” the family chose Mayo.

“When we arrived, doctors said it was most likely a tumor, but it still could have been a bone infection,” Ruth said. “We thought it would be benign and we would get it removed and go home. But it was cancerous.”

And so, two months after her clinic, Ruth was back at Mayo…for the long haul.

Angela (mom), Ruth, Dave (dad) (Photography by Fagan Studios)

Ruth’s parents, Dave and Angela, slept in her hospital room for the first few nights as she underwent vigorous tests and scans. The tests and scans revealed it would be a long stay, so the Mayo Clinic social worker recommended they call the Ronald McDonald House.

The family had some familiarity with the concept of a Ronald McDonald House, but didn’t know much about it or its services. Ruth was born with a cleft lip, so the family stayed in similar place when she was born, but it was not a Ronald McDonald House.

But they were 31st on the waiting list.

“We were on the waiting list for two weeks,” said Angela. “The House Manager called us the day before Thanksgiving with a room for our family. It was such a blessing.”

The timing was anything but coincidence. Ruth was staying at Saint Marys in the midst of chemotherapy and did not have an appetite…until Thanksgiving. She woke up Thursday with a craving for turkey, mashed potatoes, green beans and, of course, pumpkin pie.

And, as she was about to find out, she would have the Thanksgiving feast she longed for.

For more than 20 years, the Wilson family and friends have served Thanksgiving dinner to children and families staying at the House, families on the waiting list, and their extended families and friends as well.

Ruth (Photography by Fagan Studios)

“It was the biggest blessing ever,” Ruth said. “I was so worried that my family wouldn’t have a special Thanksgiving because of me.”

Her brothers were visiting from Michigan and Ohio and her uncle from Alaska and aunt from Minneapolis were in town as well. So, her dad walked to the Ronald McDonald House while the family spent time together at Saint Marys.

“I was exhausted,” Dave said. “I asked if I could have 10 meals to-go. They boxed it up quickly and sent me on my way. My family was able to have Thanksgiving dinner together in the hospital because of the Wilson family.”

“It is something we will never forget,” Angela said. “It was beautiful.”

“I was crying as I ate my pumpkin pie,” said Ruth. “It was so good and such a blessing. The meal was the reason we had a good Thanksgiving.”

The family stayed at the Ronald McDonald House for the next two weeks without Ruth, who was still inpatient as she received treatment. She heard about the House every day from her brothers, but it wasn’t the same as seeing it and experiencing it.

“Living at the House is a lot different than knowing what the House is or what it does,” Dave said. “I tell anyone who will listen how thankful I am for the House and how much of a difference it makes.”

One of the reasons the Ronald McDonald House of Rochester is able to make a difference is its volunteers. More than 2,000 people volunteer at the House every year, supporting children and families in many ways.

“House volunteers are interested in me and my life,” Ruth said. “They genuinely care about me. They are here because they want to be here.”

“Many volunteers are silent givers, doing things without being asked and without asking for anything in return,” said Angela. “That’s powerful.”

“It’s heartwarming to see people’s generosity,” Dave said. “People are crawling over each other to try and give and make a difference. And it really does make a difference.

Dave (dad), Ruth, Angela (mom) (Photography by Fagan Studios)

“We are pouring out our energy to help our child get better and, because of the House, we don’t have to worry about the other stuff.”

But Dave still finds the energy to give back. His piano playing can be heard in the dining area, filling the room with music for volunteers to enjoy while they work, serve and clean up and for families to take their minds off of their daily struggles.

“It is my way of saying thanks for the difference the volunteers are making for all of the families at the House,” said Dave.

It’s not only the volunteers that made Ruth and her parents feel at home. Both Dave and Angela talked about the community of families staying at the House and how they are on this journey together—joys and tears, smiles and fears.

Mayo Clinic is known for its world-renowned healthcare, while the Ronald McDonald House of Rochester is known for its hospitality. But the family found so much more during their two stays in Minnesota.

“Doctors are different at Mayo,” Ruth said. “They care about me—who I am. They are always thinking about me. It’s very personal.”

“The doctors, nurses and staff treat my daughter very well,” Dave said. “They work miracles medically, but they do so much more. They care for her.”

“I am more than a diagnosis or a treatment,” said Ruth.

And in the Ronald McDonald House the family found a home, which is currently expanding to serve more families beginning in spring 2019. Ruth described the House as a place with more opportunities and less isolation.

Ruth (Photography by Fagan Studios)

“It’s hard to imagine it,” Ruth said. “It’s not fun to be sick, but the House makes life so much better. If the House can help more people—if more people can experience it…”

“Nobody plans for their child to have a life-threatening sickness or an extended stay in a hospital,” Dave said. “Nobody budgets for weeks or months in a hotel. The House relieves that stress so you can focus on your child.

“More families need it.”

As far as Ruth is concerned, she finished her chemotherapy and is on the road to a full recovery. Her energy is still low and her leg is still weak, but she is headed home. She will come back every few months for a checkup, but the prognosis is promising.

“It’s a slow recovery from cancer and a slow recovery from chemo,” Angela said. “But I know she can do it.”

“And, no matter what happens, we can get through it because of what the House has done for us,” said Dave.

Ruth (Photography by Fagan Studios)

CEO Madee

Matt (dad), Abbi, Madee and Sunee (mom) (Photography by Andrew Espino)

What would you do if your totally healthy, 10-year-old daughter woke up sick? What would you do if nobody believed she was sick?

“We couldn’t figure out what was wrong with her,” said Sunee, Madee’s mom. “Everyone called her a faker and said it was all in her head.”

“Everybody doubted me,” Madee said. “Family, friends—it was the talk of the town. Even doctors didn’t know what was wrong with me.”

Months later, someone suggested Madee may have POTS—Postural Orthostatic Tachycardia Syndrome. The family had never heard of POTS, so Sunee wrote a letter to the Mayo Clinic in Rochester asking for help.

“Madee lost 30 pounds in six months,” Sunee said. “She was sick for almost a year, but the scariest moment was when she had a seizure. We needed answers.”

The Hickman family journeyed 2,000 miles from California to Minnesota for answers. That’s when they found the Ronald McDonald House of Rochester, Minnesota.

“During that year, we spent everything we had—every dollar,” said Sunee. “When we received a room at the House, I could breathe again. My daughter was safe, she was happy and she was with friends. It’s all a parent wants for their child.”

And Madee was receiving the best health care in the world.

Madee (Photography by Andrew Espino)

After two weeks of tests and appointments with doctors at Mayo, she was diagnosed with POTS, Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome and Dysautonomia, among other things. Madee suffers from migraines, brain fog, joint pain, fatigue and more. Her body attacks whatever it wants to attack. And there’s no known cure.

But it’s more about having answers than the answer itself.

“Mayo was the starting point for where do we go from here,” Sunee said. “It was the diagnosis—this is what she has, this is what you can do and this is how you can do it.”

Sunee describes those two weeks as a very scary time—a time with many unknowns and even more challenges. But the Ronald McDonald House, she says, was their safe space.

“The House is our home,” Sunee said. “It’s where I learned that everything was going to be OK. When you have a sick child and you feel helpless, the House will be there for you.

“It brings tears to my eyes just thinking about it.”

But when the Hickman family arrived in Rochester, they were added to the waiting list for a room at the House. Sunee said she can’t put into words how it felt when she received a call for a room, but she is thrilled more families will share that feeling…soon.

The Ronald McDonald House of Rochester is in the midst of an expansion that will increase the number of guest rooms from 42 to 70 and add multiple community spaces. The expansion is expected to be completed in the spring.

“That’s amazing,” Sunee said. “The environment at the House is very different from a hotel. It’s awesome that kids and parents will know that they have a place to stay.”

Since Madee’s diagnosis nearly three years ago, the Hickman family has traveled around the country for treatment, staying at many Ronald McDonald Houses along the way. But the Ronald McDonald House of Rochester remains near and dear to their hearts.

“The House was the first one we stayed at and it’s still the best,” Madee said. “We still talk about it. It’s our home.”

“From the moment we walked into the House, we were welcomed with open arms and open hearts,” said Sunee. “The House made everything OK. We were only in Minnesota for a couple of weeks, but we are still in touch with friends we met at the House.

“The support at the House is something we will never forget.”

Abbi and Madee (Photography by Andrew Espino)

And that is one of the reasons that Madee and her sister, Abbi, founded Madee’s Dog Bakery. The girls wanted to help their parents with medical bills, donate to medical research and support the Ronald McDonald House of Rochester. But the bakery with a slogan of You lick it…You buy it! has become so much more. Madee is Chief Executive Officer, while Abbi is Chief Financial Officer.

“We have always been very involved with animals,” said Madee. “It just felt right.”

“Their first sale was at the local farmer’s market—they sold out,” Sunee said. “The girls recently submitted their audition tape for Shark Tank and we are in talks with some big companies. It’s all very exciting!”

And it all started at the Ronald McDonald House of Rochester.

Madee is stable, but every day is a different battle and she doesn’t know what tomorrow holds. But whenever she feels discouraged, she thinks of the Ronald McDonald House of Rochester, which became her home, saying that “the people inside are what makes it home.”

The family has not returned to Minnesota since their initial visit, but Sunee said Mayo Clinic and the Ronald McDonald House of Rochester will always be their home base, adding “if it wasn’t so cold, we might move to Minnesota.”

But, for now, the Hickman family’s heart is with the House that is 2,000 miles away.

Sunee (mom), Abbi, Madee and Matt (dad) (Photography by Andrew Espino)

Two Stays, One Story

Freking children (Photography by At A Glance Photography)

When people hear stories about families staying at the Ronald McDonald House of Rochester, Minnesota, they often say they can’t imagine what it would be like to go through something like that with their child.

Well, what if you had to go through it twice?

Bryce and Bobbi Jo Freking were thrilled and excited. It was 2013 and they were about to become parents for the first time. And it was a girl—a bonus in Bobbi Jo’s eyes. But those feelings were soon replaced by fear, worry, and uncertainty, as the new parents welcomed their beautiful daughter Aliyah into the world…seven weeks early.

“My water broke when I was only 33 weeks pregnant,” said Bobbi Jo. “The doctor gave me a steroid injection to help her lungs develop for delivery at 34 weeks, but once we arrived at the Mayo Clinic, she started to decelerate. Doctors said if she did it again, they would be forced to deliver her via C-section. And that’s exactly what happened.”

Faced with an unexpected stay in Rochester, Bobbi Jo and her husband were approached by a Mayo Clinic Social Worker who told them about the Ronald McDonald House.

“We didn’t expect her to come early, so it was a shock,” Bobbi Jo said. “They said we could stay at the Ronald McDonald House, but truthfully, we didn’t know much about it. What we found was a home-away-from-home, a support system, and a blessing; a true blessing.”

Their first stay at the House lasted only 17 days, but it was a good memory during a frightening time. As Bobbi Jo describes it, Aliyah deals with some hearing loss, but she has been very fortunate with her health since her premature birth. She is entering kindergarten this year.

Three years later, Aliyah became a big sister to Makaylee, who was born happy and healthy—emphasis on the healthy, per Bobbi Jo.

Two years after that, they once again added to their family. Unfortunately, healthy seemed like a distant memory.

Carson (Photography by At A Glance Photography)

Carson was born in Fairmont before being airlifted to Rochester. He was diagnosed with tracheal stenosis, a congenital defect that causes a narrowing of the windpipe. Doctors said they needed to open his chest to repair it, but they would have to wait for him to grow before they could perform the surgery. What followed were the longest six weeks of their lives.

“Carson’s journey into the world was very scary,” said Bobbi Jo. “Every expecting mother waits to hear their baby’s first cry, so when your baby is delivered and you don’t hear that and all you hear is that there is no respiratory effort, words cannot describe how you feel. But we were confident in the care we would receive at Mayo Clinic and confident in the hospitality we would receive at the Ronald McDonald House. It gave us comfort.”

Surgery was a success and Carson is on the road to recovery.

Bobbi Jo described how doctors cared for Carson like their own son and how her family was welcomed back to Mayo and the House with open arms. Aliyah and Makaylee were in and out, splitting time between visiting their brother in the hospital and being kids at the House. The impact on both Aliyah and Makaylee was immeasurable.

“The girls anticipated bringing their little brother home,” Bobbi Jo said. “When that didn’t happen, they were confused. The House, much like our home, was a place for them to be kids. It provided a great community and support system for our entire family…twice.”

Three weeks after Carson’s surgery, the Freking family checked out of the Ronald McDonald House of Rochester and journeyed home to yet another community of supporters in Sherburn and at St. John’s Lutheran Church.

Carson is growing and doing well. He will need to visit Mayo Clinic for frequent scopes to ensure that his trachea is growing as he grows. But it gives them comfort to know that the House will always be here.

“The House is an amazing place,” said Bobbi Jo. “We can’t express how thankful we are to the staff and volunteers. When you go through a situation like this, you realize that there’s a lot of really good people in the world—more than you know.”

Bobbi Jo wanted the opportunity to thank all of the Mayo Clinic doctors and nurses in Fairmont and Rochester, the congregation and pastors at St. John’s Lutheran Church in Sherburn and staff, volunteers and families at the Ronald McDonald House of Rochester. But most of all, Bobbi Jo wanted to thank a member of the NICU Flight Team…even though they have never met.

“Nurse Lori was so calm and confident,” Bobbi Jo said. “As a mother, it is your job to keep your baby safe, and when I was laying helpless on the operating table, I only heard her voice. I held on to her confidence. I knew that when I couldn’t be with my son, she would take care of him. I hope I can personally thank her one day, because I will never forget the sound of her voice.”

Bryce and Bobbi Jo also thanked their family, saying they would not have been able to get through these difficult times without them.

For two of their children, their memories start at the Ronald McDonald House of Rochester. Bobbi Jo talked about the House being there despite everything that was going on, saying sometimes the smallest things are the biggest blessings.

“And now…it’’s time to go home.”

Comeback Jack

Jack (middle) with father John (left) and mother Kaycee (right) (Photography by Dan Krecklow Photography)

Five months. 151 days. 217,440 minutes. 13,046,400 seconds. And it felt like much longer for Kaycee and John Krecklow.

“Jack was in the NICU for 151 days” Kaycee said. “And we were terrified.”

Kaycee was 24 weeks and three days pregnant with Jack when he was delivered at Mayo Clinic in Rochester via emergency C-section due to a significant drop in heart rate. He was one pound, 11 ounces and his lungs were the worst the doctor had ever seen in a premature baby. His quality of life was unknown—if he survived.

But all Jack needed was time.

“Jack never had any other health complications,” said Kaycee. “It was only his lungs. He needed time for his lungs to grow and we wanted to give him that time.”

Kaycee and John knew Jack was staying in the NICU at Saint Marys Hospital, but they didn’t know where they were going to stay. Weeks before traveling to Mayo Clinic, Kaycee and John stopped working due to pregnancy complications and being on bed rest. That’s when the social worker told them about the Ronald McDonald House of Rochester.

But there was a waiting list.

“We didn’t know what we were going to do,” Kaycee said.

As a result of Jack’s premature arrival, Kaycee needed to stay at the hospital for 24 hours to treat an infection. Once she completed her treatment, a room was available at the House.

“We didn’t know what to expect from the House, but we were greeted with open arms and open hearts,” said Kaycee. “The staff and volunteers were really caring and accommodating after Jack was born. Jack never stayed at the House, but we did…for 149 days and nights.”

Jack and Kaycee (Photography by Dan Krecklow Photography)

Kaycee described their stay at the House as nontraditional; a mom and dad without their child. But it was always a home-away-from-home for her family, whether it was her and John, her and her sister or her and her mom.

“Our typical day was different than most families because our child wasn’t staying with us at the House,” Kaycee said. “In the morning, we had breakfast and coffee on the go and shuttled or walked to the hospital. In the evening, after spending the day with Jack, we returned for the House Dinners. We had a safe place to sleep, eat meals and take showers.

“It was never a worry for us.”

The Ronald McDonald House is located only blocks from Mayo Clinic and Saint Marys Hospital, which is very important for families with inpatient children. Kaycee and John experienced the importance of this proximity on a winter morning.

“I will never forget that day,” Kaycee said. “Jack was only three weeks old and we received a call from Saint Marys at 3 a.m. We left immediately, running out of the House as fast as we could. But it didn’t look good.

“The doctor originally told us Jack was a day-by-day kid. That night, the doctor said Jack was hour-by-hour. It was terrifying.”

His lung had collapsed and breathing was a struggle. The doctor made an emergency decision: transfer Jack to another vent. The decision allowed Kaycee and John to hold their baby boy for the first time. And it saved his life.

“We were prepared to say goodbye to our baby boy,” said Kaycee. “Instead, he is here.”

Jack celebrated his first birthday in September and he is celebrating his first Christmas outside the NICU. But Kaycee and John look back on their first Christmas with Jack fondly because of the Ronald McDonald House.

“The House made Christmas special for us,” Kaycee said. “It was not a typical Christmas, but our families visited for the House Dinner. The House is a happy memory, even though it was a really sad and trying time.

“It’s something I will never forget.”

Jack and John (Photography by Dan Krecklow Photography)

The Ronald McDonald House of Rochester is in the building process of an expansion, which will make it the largest Ronald McDonald House in the state of Minnesota. It is on track to welcome families in the spring. Kaycee says the expansion will ease so many fears and worries for families who are already going through so much.

“We were originally on the waiting list,” said Kaycee. “And while 70 rooms will not completely solve the issue, it will make a significant difference. There are so many families in need and the House gives families a place to go.”

Jack returned home from Rochester on oxygen, but he no longer needs oxygen support. He has regular appointments with a pulmonology specialist, ophthalmologist and NICU follow-up, but has not required an overnight stay and Kaycee and John do not anticipate ever staying overnight. But if they do…the House is a place they can go.

“It’s comforting to know that the House is there for us if we need it,” Kaycee said. “You don’t truly know what it means until you’re in that situation.”

Kaycee and John will never forget the feeling of going home; of Jack coming home. But now they have two homes—and that’s something they will always remember.

Knowing Logan

Pictured left to right: mother Rachelle, Logan, father Ken (Photography by Plethora Photography)

Ken and Rachelle Drabek know exactly what they are getting at the Ronald McDonald House of Rochester and Mayo Clinic, which is increasingly important in a world of unknowns.

Their eight-year-old son Logan first visited Mayo when he was three. He was very tiny, had no appetite and was developmentally delayed. And he had already endured one surgery to open up his airway.

“We knew there was something wrong with Logan,” said Rachelle. “Our doctors couldn’t figure it out, so we pursued answers at Mayo Clinic. There were a lot of unknowns.”

Logan was diagnosed with autism, attention-deficit/hyperactivity disorder (ADHD), dyslexia, and ventricular septal defect (VSD), among other things. He has a form of muscle myopathy, but it doesn’t have a name. He has a metabolic issue, but it doesn’t have a name. The myopathy has walked up Logan’s body and he endured second airway surgery. But despite all of the unknowns, Ken and Rachelle know how to best help him, and that is a comforting thought.

“Logan’s condition is incurable and life-limiting,” Rachelle said. “He is one-of-one; a medical mystery. We don’t know how it will progress. It’s very complex. But even though we do not have an overall diagnosis, we know so much more about Logan. I credit how well Logan is doing because of what Mayo has been able to discover.”

Their first visit to Mayo was overwhelming. Rachelle and Logan stayed in a hotel because they didn’t know about the Ronald McDonald House. Being contained and entertained in a hotel room was not ideal, but venturing out was too difficult. Shortly thereafter Rachelle learned about the House.

Logan and Rachelle (Photography by Plethora Photography)

“When we heard about the Ronald McDonald House, I was in awe,” said Rachelle. “It was such a different and unique experience. We finally had a place we wanted to go.”

Many families who visit Mayo Clinic and stay at the Ronald McDonald House do so once or twice, depending on severity of condition and number of appointments. Logan and his family have been coming to Mayo for treatment for the past five years and have stayed at the House more than 10 times. It has truly become their home-away-from-home.

“The community at the House is amazing,” Rachelle said. “The families we meet—we are all in different boats, but we are on a similar journey. We understand each other. That’s probably the most helpful thing about the House; other people who get it.

“House volunteers and staff are wonderful. They make Logan feel so incredibly special. They are top-notch people with the most loving hearts. They have become part of our family.

“The House gives us strength.”

The Ronald McDonald House of Rochester is in the building process of a 30-room expansion, which will include a small indoor gym, indoor and outdoor play areas, underground parking and green space. It is on track to welcome families in the spring.

Ken and Logan (Photography by Plethora Photography)

“The additional spaces, particularly the gym, are very important,” said Rachelle. “Many kids have multiple appointments and spend the entire day in the hospital and there simply isn’t an area for them to play, use energy, and be loud. The House has spaces for activities, but we are very excited about the gym. It will give Logan a place to be a kid.”

Many families who return home from Mayo and the Ronald McDonald House do not return, at least not regularly. But that is not the case for Logan, who remains a medical mystery. Rachelle expected to visit Mayo in Rochester every few months, but due to Logan’s condition, the family has visited Mayo every month since May. She describes the family as lifelong Mayo patients and part of the Rochester community.

“Mayo has been so wonderful,” said Rachelle. “Even though he is an unknown, there is still a high level of commitment from his doctors and nurses to learn more. It would be easy to grow weary, but they have never given up on him. We are doing as well as we are because Mayo has his best interest at heart.”

The Drabek family lives one day at a time, thankful for the time they have together. Logan’s family, including his older siblings Tim and Ashley, support him every step of the way. And they have the support of their growing family in Rochester at Mayo Clinic and the Ronald McDonald House.

“We love the Ronald McDonald House and Mayo Clinic and all that they do,” Rachelle said. “I honestly feel, without these two places, we wouldn’t be where we are, as stable as we are, or able to handle it. We have met lifelong friends, despite only staying in the same place as them for one week. That’s the beauty of the House…it brings people together.”

Logan (Photography by Plethora Photography)

Outlier Liza

Pictured left to right: brother Joe, father Pete, Liza, mother Mary; not pictured: sister Claire (Photography by Annie Marie Photography)

Liza Hassler was an outlier coming into this world. She was born with a rare craniofacial condition that affects only one in 300,000 live births.

Liza’s journey began in Chicago, where she received treatment and underwent numerous surgeries. After the family moved to Minnesota, Liza had an extensive surgery in Texas. She had complications that extended her recovery in 2011. Pete and Mary decided it was time to pursue answers at Mayo Clinic.

In August 2016, Liza was diagnosed with Rhabdomyosarcoma, an aggressive and highly malignant form of cancer that starts in the muscle-forming tissue. The diagnosis meant six weeks of proton beam radiation. Mayo Clinic is one of only 27 operational proton therapy centers in the United States, bringing patients from all across the country for its services. In 2017, 33 families that stayed at the Ronald McDonald House of Rochester, Minnesota did so for proton beam therapy. And that is what first brought the Hassler family to this House.

The Hassler family has stayed at the House for more than six weeks in the fall of 2016 and the summer of 2018. Each stay included 28 sessions of proton beam radiation. The second stay ended with Liza battling pneumonia, which meant an extra week in Rochester.

“This House is special; it’s unique,” said Mary. “We have stayed at other Ronald McDonald Houses, but they don’t stand out like this one does. The people here are genuinely interested in my family and care about Liza. They love us. And we love them.

“For Liza, it’s important to know what’s going to happen and what to expect. She knows this place. She knows the goodness here. For a child that has anxiety with changes, the House puts her at ease. It provides comfort and structure.”

The familiarity of the House is perhaps the most important thing for Liza. For Mary, the community has changed her life. From other mothers and families to staff and volunteers, it’s the people inside that make the House a home.

Mary and Liza (Photography by Annie Marie Photography)

“The relationships I have with people while staying at the House are incredible,” said Mary. “Mothering alongside other really strong moms has been such a blessing. These moms are so different from me, but they are all so beautiful in how they care for their children. That’s what stands out about the House. That’s what is really cool about this community.

“The House staff and volunteers help you with whatever you need. I cherish the personal connection I have with them. It’s really hard when your child is sick and I can’t thank them enough for giving their time to this amazing place.”

Mary describes the House as a place for families to process their emotion, be together and support each other. She recalls spending time with a mother and daughter who remained positive in a life-threatening situation. Now, Mary aspires to be positive when she has similar struggles and challenging emotions.

Pete and Liza (Photography by Annie Marie Photography)

Liza has grown up at the Ronald McDonald House of Rochester, both physically and emotionally. Mary remembers a time when Liza would not engage with other kids because she looks different, but House activities have given her courage. She interacts with other kids. She is included. She has connections.

“I enjoy all of the activities at the House, especially Game Night,” Liza said. “There was a raffle and I won Disney Eye Found It! Hidden Picture Game. It’s really fun!”

“I am really proud of Liza,” Mary said. “It’s awesome to see her grow in this way.”

Liza continues to fight and do as well as she is doing because of the care and treatment she is receiving at Mayo. Proton beam therapy requires the collective efforts of nurses, doctors, anesthesiologists, oncologists and others. Mary thanks Dr. Carola Arndt, nurses Jill and Emily, nurse practitioner Sharon, Dr. Nadia Laack and Child Life specialist Randy for their work with Liza.

“They gave us hope when the outlook was pretty bleak,” Mary said. “They are all such great people; I don’t know where we would be without them.”

And between all the doctor appointments and treatments, Liza is enjoying spending time with her family and doing normal activities. This summer, she began riding her bike again. Liza’s brother, Joe, learned how to coach her and worked with her for more than two months, enabling Liza to ride her bike independently. When cancer struck, she lost the strength to ride.

Liza faces a long road, filled with challenges and obstacles. But she will face that road with her family—Mary and Pete, Joe and her sister, Claire—by her side. And she will face that road one pedal at a time.

“She’s an outlier,” Mary said. “She was an outlier coming into this world and she’s going to be an outlier to stay in this world.”

Liza (Photography by Annie Marie Photography)

Families of Faith

Pictured left to right: Peter Westby, Jeannie Westby, Haley Westby, Faith Westby, Landon Luft, Lilly Luft, Wendy Luft, Lenny Luft (Photography by Fagan Studios)

Most people are lucky if they have one loving family. Faith Westby has three.

Faith is a sweet, charismatic 15-year-old girl living with a rare, multi-system disorder. During an annual checkup for the girl who already had heart surgery, doctors diagnosed her with a large atypical adenoma on the left side of her liver and multiple adenomas on the right side as well.

Long story short…she needed a new liver.

“When we first learned that Faith needed a liver transplant, it felt like our world had been turned upside down,” said Faith’s mom Jeannie. “It was territory we knew nothing about and it scared us. Her health was never the greatest, but learning that she had cancer in her liver and that she needed a transplant was a complete shock.

“We were afraid for our family and for the family that would be donating the liver that would save our daughter’s life.”

On July 4, 2017, the Luft family was spending the holiday with friends. Logan, a full-of-life 15-year-old boy, was thrown from his ATV, resulting in bleeding in his brain. He was airlifted to Saint Marys in Rochester, but it was too late. Logan was pronounced brain dead on July 5. His parents, Wendy and Lenny, prayed that his organs would be used to save multiple lives.

Long story short…they did.

On July 7, two days after Logan passed away, Jeannie and Peter received a phone call they had been waiting for since the diagnosis. Faith was going to receive Logan’s liver.

“I learned about Faith’s liver transplant on Facebook,” said Logan’s mom Wendy. “Her story encouraged me to start looking for the recipient family.”

Jeannie and Faith (Photography by Fagan Studios)

The Westbys were told that the liver came from someone in the tri-state area, but did not receive any additional information. A news broadcast about Logan made them think about the possible connection to the Lufts, but it wasn’t until Jeannie received a Facebook message from Wendy that they learned the truth.

“I knew from the very beginning that it was Logan’s liver,” Jeannie said. “My heart was broken for their family. It was hard to understand how I could feel so much joy (for Faith) and so much sadness (for Logan and his family) at the same time.

“We waited anxiously for this call, but we also dreaded it.”

Jeannie did not respond immediately, scared that the Lufts would be disappointed with the way their son’s liver was used, or rather, who it was used to save. But that fear was washed away with happy tears after the two finally connected.

“I was scared to death,” said Jeannie. “I was afraid that they wouldn’t like us or that they would be disappointed that Logan’s liver went to a girl with special needs. But we became a family.”

“I was so excited to meet Faith,” Wendy said. “Our families bonded instantly. Jeannie showed me Faith’s incision and said, ‘Your DNA is a part of my daughter, so she is your daughter, too.’ It was a moment I will never forget.”

Logan and Faith are forever connected, as are the Westbys and Lufts. They refer to each other as a second family. And, according to Jeannie, the Westbys have a third family.

Faith was born with her disorder and faces a lifetime of complex medical needs. Her needs directed her and her family to Mayo Clinic for treatment. Mayo Clinic directed her and her family to the Ronald McDonald House of Rochester, Minnesota for comfort and care.

Haley, Faith, Landon, Lilly (Photography by Fagan Studios)

“Walking through the front doors (of the Ronald McDonald House of Rochester) was like walking into a completely different world,” Jeannie said. “It’s such an uplifting feeling; you feel loved. It is home, it is comfort and it has brought Faith and our family so much joy.

“The staff and volunteers are our family.”

After long days of hospital visits and recovery, Faith’s nights were filled with crafts, campfires and therapy dogs. The family was able to stay together, eat together and laugh together.

“Faith is a girl that loves people and all the activities were perfect for her health and happiness,” Jeannie said. “The House has given us so many wonderful experiences and lifelong memories.”

While Faith enjoyed being a kid, her parents enjoyed the sense of community. Families at the House are supported by staff, volunteers and other guest families. It’s a support system that is special and unique. And the Westbys wanted to share that community with the Lufts.

“They invited us to the House to show us where they lived after Faith’s surgery,” said Wendy. “And we were amazed. It’s such a blessing to have a place like that for children and their families. It’s beautiful…it is home.”

Logan and his family gave Faith and her family new life and, in the words of Jeannie, the Ronald McDonald House of Rochester “just makes life better.”

Home is the place where one lives as a member of a family. Home is the place where something flourishes. Home, for the Faith and so many others, is the Ronald McDonald House of Rochester.

Faith (Photography by Fagan Studios)

Bryce’s RMHMN Story

Over the past three years, 3,000 families were turned away from the Ronald McDonald House of Rochester, MN because of capacity constraints. “Families travel great distances to our House and often have exhausted every medical resource available near their homes. They come to our community seeking hope, healing, compassion and comfort,” said Peggy Elliott, Executive Director of Ronald McDonald House Rochester, Minnesota.  “We must answer the call to provide love and hope to seriously ill children and their families. We are so grateful to all of our donors and friends for their generous gifts of support to grow our mission,” said Elliott.

As Mayo Clinic Children’s Center grows in particular in the areas of proton beam therapy; regenerative medicine and individualized medicine the need for services at the Ronald McDonald House continue to rise. On average the Ronald McDonald House® serves over 900 families every year from across the country and around the world

Watch our latest campaign video about our former guest, Bryce.

 

Watch the audio description version of this film by clicking here.

 

Click here to make a donation to our Love Tremendously, Hope Exceedingly capital campaign.