Archive for category: Featured

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.

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.

“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.

“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.

“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.

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 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.”

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.

“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.

“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.”