In Her Words: 40 Years

In the background, hanging on the wall, is a Jane Belau work of art; a heart with a bouquet of flowers. All proceeds from the sale supported the Ronald McDonald House of Rochester. It hangs in Cynthia’s living room.

Cynthia Nelson is an Emeritus Trustee and reflected on her time at the Ronald McDonald House of Rochester, Minnesota, and its 40 years serving children and families…in her own words!

I was working at Mayo Clinic in the early 1980s and I was in the personnel department, as was Dave Senjem, who is now in the Minnesota Senate. He was on the Board for Northland Children’s Services. I wanted to get involved in the community, but I was less interested in joining a service club to raise money for charity; I wanted to work with charities directly. Dave completed his term and nominated me for the Board.

Once I was in…the House almost became my second home.

People ask, “How can you spend your time around sick children?” In my eyes…the children at the House have so much joy. They are sick, but they are celebrating life every day. And their smiles light up the room. I learned many life lessons from observing and interacting with the children and families at the House.

The House has gone through many changes, but its purpose and goals have remained constant. Mayo Clinic says: needs of the patient come first. The House says: needs of the children come first. The House surrounds the kids with as much normalcy, consistency, and support as it can. It is so important for the kids and their families.

When I was nominated…I was shocked. I had no idea. Phil Henoch said: “An Emeritus Trustee is someone who has a long history of involvement and a passion for the House.” Involvement and passion were key. An Emeritus Trustee does not always have a formal role, but we are always available for the House. Always.

I was on the Love Tremendously Hope Exceedingly capital campaign leadership team. People invested extraordinary effort, often behind the scenes, for the larger House to become a reality.

The grand opening and ribbon cutting was a very special moment; we all witnessed the joy on the faces of children and families. It was all so beautiful and supportive for our guests.

I cannot believe it has been 40 years…until I look in the mirror! I drive down the street and it is all so amazing. The House has come a long way from shared bathrooms and board meetings in the living room.

But the core motivation is the same: how can we help children and families experiencing extreme worry and upheaval in their life?

I love watching the children enjoy House activities. Every child who walks through the doors of the House is special.

It has been a very great honor to be able to help the House in any way I can. In many life situations, people say, “I gave more than I received.” I think it is the other way around at the House.

I receive far more than I give.

Will you help us celebrate 40 years with a gift of $40?
https://www.classy.org/campaign/celebrating-40-years/c288676
Thank you for supporting Ronald McDonald House children and families!

Remi’s Life-Saving Scan

Remi (Photography by Laci Eberle Photography)

Remi is a thriving one-year-old who Katelyn and Casey cannot imagine life without and, if not for an ultrasound, she may not be here.

Katelyn, an OB/GYN ultrasonographer for Mayo Clinic in Eau Claire, sat silent in stunned disbelief as she stared at the screen during her 20-week ultrasound.

“I wanted to check on her; I wanted to see her,” said Katelyn, Remi’s mom.

“But as I looked at her heart…my heart sunk.”

Something was wrong. Katelyn’s friend and colleague confirmed her greatest fear: her baby had a heart abnormality.

“You never expect anything to be wrong with your baby…” said Katelyn.

Remi was diagnosed with Dextro-Transposition of the great arteries. DTGA is a congenital heart defect in which the main arteries—pulmonary and aorta—exit the heart parallel as opposed to crossing. It is a rare condition—affecting one in every 3,413 babies—and it is not always immediately detected.

Which makes the discovery even more remarkable.

“If the heart defect on the ultrasound was not detected and Remi was born in Eau Claire, she would have been flown to Rochester and she may not have survived,” said Katelyn. “Her condition post-delivery was very bad.”

Katelyn, Remi, Reese, Casey (Photography by Laci Eberle Photography)

Katelyn relocated to Rochester when she was 37 weeks pregnant because the pediatric cardiac team was not comfortable with her being two hours away…in case Katelyn went into labor. And Remi would need immediate care.

When Katelyn arrived in Rochester, she was not familiar with the Ronald McDonald House. After Remi was diagnosed, Katelyn was referred to the House by a Mayo Clinic social worker. The House answered two key questions: how would Katelyn and Casey afford lodging and how would they maintain normalcy for their four-year-old daughter Reese?

“Reese understood she was going to be a big sister, but she didn’t understand what was happening,” said Katelyn. “My husband is a teacher and wasn’t able to take time off before Remi was born. So, I started maternity leave early and Casey stayed home with Reese.

“And every weekend they would come to Rochester and we would stay at the Ronald McDonald House…as a family.”

But the House was in the final stages of its expansion and rooms; Katelyn was placed on the waiting list. Her OB/GYN doctor in Eau Claire, whom she works with, rallied others to contribute money for Katelyn’s hotel stay until a room opened up at the House. And they made a generous donation to the House in Remi’s name.

“It was such a blessing,” Katelyn said. “And when I was induced in Rochester, Dr. Yun from Eau Claire visited me and encouraged me. It was really sweet.”

Remi June was born on May 20. She was immediately transported via ambulance from Methodist to Saint Marys—Remi needed a balloon septostomy to stabilize her heart for a few days until she was strong enough to undergo surgery. Katelyn remained at Methodist for her own recovery while Remi recovered in the NICU at Saint Marys.

Doctors conducted a major open-heart surgery—arterial switch operation—in May 2019.

Remi (Photography by Laci Eberle Photography)

“The doctor is world-renowned,” said Katelyn. “Our beautiful daughter grew stronger and stronger by the day. She simply needed time to recover.

“And we were with her because of the Ronald McDonald House.”

When Katelyn arrived in Rochester, the House was in the midst of its expansion to add more guest rooms and community spaces. Her family was staying at the House for the grand opening in May and was the first family to stay in one of the new guest rooms—two moments she says they will never forget.

“I don’t feel like we deserved to be at the House,” Katelyn said. “It’s very humbling. It was an incredible support system, not only monetarily, but in every way.

“We did not have to worry about anything—we were able to focus on our child.”

One reason they were able to focus on Remi was because of the House volunteers.

“All of the volunteers were incredible,” said Katelyn. “They always had a smile on their face and asked if we needed any help. They were there for us during the hardest and most difficult time of our life.

“Again…it’s very humbling.”

Remi has fully recovered and is living a normal life—there is nothing anatomically wrong. She can do anything any other child can do—no restrictions. She will visit a cardiologist yearly for the rest of her life, but all reports are positive thus far.

While Remi never stayed at the House, it became much more than a place to stay for her parents and sister.

“The Ronald McDonald House is the best place in the entire world,” Katelyn said. “I can’t explain it in words…it means so much to our family. It’s a significant part of our lives.”

“It’s a place we will never forget and a place we will forever support.”

Katelyn, Remi, Reese, Casey (Photography by Laci Eberle Photography)

Nolan’s 38 Weeks

Nolan (Photography by Fagan Studios)

Nolan is very energetic. He is happy, go-lucky. He is a jokester.

But suddenly…Nolan wasn’t being himself. He was quiet. He was moody. He had night sweats. He had a headache. He was constipated. He was vomiting.

Was it a sinus infection? Was it strep throat? Mono? Lyme disease?

Josh and Tina’s parent instinct said it was something serious.

“It was the start of a long journey,” said Josh, Nolan’s dad.

After months of dealing with common illness and taking common medication, Nolan and his parents, grandparents, and siblings, prepared for Halloween night—he was so excited for trick-or-treating. But a couple hours into the holiday event, Nolan said he didn’t feel well. He started vomiting.

“We packed, loaded the car, and were in Minneapolis within a couple hours,” Josh said.

Nolan (Photography by Fagan Studios)

The family visited Children’s Minnesota for further evaluation and testing. The scans revealed it was a sinus issue…but it was a tumor in his sinus. A biopsy confirmed the findings.

“It was a lot,” said Josh. “It was a lot for an eight-year-old and it was a lot for us.”

Doctors recommended an aggressive treatment plan: chemotherapy for 38 weeks—nearly 10 months. He would receive normal chemo every week and endure a one-month stretch at Mayo Clinic in Rochester for proton beam radiation therapy.

“Chemo was hard on him,” Josh said. “It was hard to watch.”

Josh described their time at Mayo as an “awesome miracle.”

Nolan (Photography by Fagan Studios)

“You hear about Rochester and Mayo, but you never think you or your family will need it,” said Josh. “It’s such a blessing.”

And for the duration of their time in Rochester, Nolan and his parents have stayed at the Ronald McDonald House of Rochester. Josh and Tina assumed it would be weeks before they received a room in the House—they heard there was always a waiting list. But when they arrived and talked to a Mayo social worker, she said: “You will definitely have a room.”

Josh and Tina did not know the Ronald McDonald House of Rochester expanded.

The family was in less than 24 hours later.

“The House is incredible,” Josh said. “There is so much support for Nolan and our family. We are so lucky—it would have been such a challenge without it.”

The expanded Ronald McDonald House of Rochester has 70 guest rooms and many new community spaces and underground parking for families. It is the largest House in the state of Minnesota, 11th largest in the country and 17th largest in the world.

“I see the plaques; I take notice,” said Josh. “People and businesses donated rooms and supported my son and my family…

“I can’t describe it.”

Nolan (Photography by Fagan Studios)

The House was a place for the entire family. Nolan and his parents were in Rochester while his older siblings were hours away with his grandparents. But on weekends…the House was their home as well.

“The House is such an inviting atmosphere,” Josh said. “It is comfortable. We discussed renting an apartment or a house, but the House is the best environment for Nolan.

“It has definitely made a difference.”

Volunteers are a primary reason the House is a warm place. The House received 19,086 volunteer hours from 1,620 volunteers in 2019.

“House volunteers are amazing people,” said Josh. “They make you feel safe and give you peace. The smiles, care, connections—it all means so much.”

As his dad said…Nolan is on a long journey. The tumor is in a dangerous location. There is a 70 percent chance chemotherapy will clear it…but there is a 30-50 percent chance it will return within two years. And if it comes back…it will be even more dangerous.

“It’s all statistics,” Josh said.

For now, Nolan is going on with life and keeping the faith.

“Because the journey is not over,” said Josh.

Nolan (Photography by Fagan Studios)

Alexander joins House operations team

ROCHESTER, MINN.—The Ronald McDonald House of Rochester, Minnesota, is pleased to announce that Matt Alexander has joined the staff as Facility Associate, effective April 6, 2020.

As Facility Associate, Matt will work closely with the Operations Director to ensure a safe, well-maintained and inviting Ronald McDonald House facility and grounds. The safety and security of the pediatric patients and their families remains top priority.

Matt earned a Bachelor of Science in Recreation Parks and Leisure Services from Minnesota State University – Mankato and brings a wealth of practical experience to his role. Matt most recently worked as a Service Technician for BBA Aviation in Rochester and previously worked as a Carpenter for Alexander and Sons Builders, focusing on new home construction and remodeling projects.

Matt enjoys spending time outdoors and participating in recreation activities such as fishing, hiking, camping, and boating.

Founded in 1980 as Northland Children’s Services, the Ronald McDonald House of Rochester, Minnesota, provides a home away from home and offers support to families seeking medical care for their children. For more information, visit www.rmhmn.org.

Braylon’s Battle

Rayman family

More than five years ago, Chase’s wife, Jenny, was airlifted to Mayo Clinic’s Methodist Hospital in Rochester—she was in premature labor. Ready or not…their son was on his way. And he was seven weeks early.

Braylon was born, but there were complications. He wasn’t making a sound and something was noticeably wrong with his skin. Braylon was rushed to the Neonatal Intensive Care Unit (NICU) at Mayo Clinic’s Saint Marys campus.

He was fighting for his life.

In the first few days, Braylon was resuscitated numerous times—his organs were not functioning properly—but he was a fighter and he pulled through.

It was only the beginning.

Braylon was diagnosed with Ichthyosis, a rare skin disorder that affects only 1 in every 600,000 babies annually. Chase and Jenny were told their son would likely be deaf and blind. And he had a more severe case of the disorder, causing additional health concerns.

Doctors recommended Braylon spend several weeks in the NICU for monitoring.

Chase and Jenny were told to call the Ronald McDonald House of Rochester and see if a room was available. There wasn’t; the family was put on the waiting list. But within only a few days, Chase and Jenny moved into the House, which is within walking distance of Saint Marys.

“The Ronald McDonald House of Rochester makes it possible for families to stay close during the most difficult time of their lives,” Jenny said. “We could not have done it without the House and our family, friends, and community.”

Three weeks later, Braylon and his parents were able to move home.

Only weeks after being released from the NICU, Braylon and his parents returned to Rochester and Mayo Clinic for a follow-up appointment. The result was miraculous. His left ear was functioning fully and his right ear was improving as well.

It was yet another testament to the family’s motto: Don’t Stop Believin’.

Braylon’s battle is not over. His health concerns still linger. But he has his hearing and vision. And Chase, Jenny, and Braylon continue to take it one day at a time—a rule Chase affectionately calls: winning the day.

“You never know what tomorrow brings, so enjoy today,” said Chase.

The Rayman family continues to support the Ronald McDonald House of Rochester by collecting and donating pop tabs.

Additionally, Chase is one of the people involved with Cans for Kids, a can collection event hosted by McNeilus Companies. McNeilus Companies parks one of its trucks in the House parking lot to accept donated aluminum cans—all proceeds directly support the children and families at the House.

“Pull a tab, save a can,” Chase said. “It is easy and it can help a family in need.”

The next collection date for Cans for Kids is Saturday, March 14, from 8 a.m. – 12 p.m. For more information, please visit https://www.rmhmn.org/cansforkids/.

Why I Volunteer

Nina, 22-year volunteer

Volunteer Nina reflected on her 22 years at the Ronald McDonald House of Rochester, Minnesota…in her own words!

I volunteer because I sincerely believe in the mission of the House. We provide a home away from home for families undergoing terrific worry and stress while hoping to get help for their seriously ill children. That’s a mission that is almost impossible to beat. And every shift I see that mission in action.

The House provides a place for a family to live and be comfortable. We also coordinate groups that want to come in and provide a meal for our families. The staff schedules recreation, therapy animals, programs, games and entertainment for all to enjoy!

Every time I volunteer, I am inspired by the children who are our guests. They are so brave. When a child is not feeling the best, they are usually very quiet, very still, and not communicating a lot. But as soon as they feel even a little bit better, they are ready to play, to give a high five, and to ask questions! And it is comforting that there are other children for them to get to know as friends.

After being here for many years, I realize the most comforting thing the House offers is that all these parents are around other families going through the same fear, worry, and uncertainty that they are. They support each other. I don’t think anyone knows what those emotions feel like unless you are experiencing them, and every family has that in common.

This is a great place to volunteer. You receive far more than you can ever give.

CLICK HERE FOR MORE INFORMATION ON VOLUNTEERING

Record-Setting Elena

Jon and Megan with Elena and Robbie (Photography by Broken Arrow Photography)

Megan and Jon were told it would be at least six to 12 weeks before they would be able to take their daughter home from the hospital. But Elena had other ideas.

“Elena is doing very well,” said Megan. “Nurses said she was trying to set records.”

“We know families who have been here for six months,” Jon said.

“We are very fortunate,” said Megan.

At their 20-week ultrasound, Jon and Megan found out that their daughter was missing part of her diaphragm. The ultrasound also revealed Elena’s stomach was pushed up into her chest cavity, shifting her heart to the right. When the doctor came in to discuss the ultrasound results, she told them that their baby has a serious birth defect known as congenital diaphragmatic hernia. This is a condition in which part or all of the diaphragm does not form. In Elena’s case, there was a large hole allowing abdominal organs to migrate into the chest cavity, which in turn inhibits lung growth and development.

Megan with Elena (Photography by Broken Arrow Photography)

“It was very scary,” Megan said. “It felt like a death sentence. When we learned how severe it was and read about survival rates…we were very deflated.”

Jon and Megan made a thoughtful, but difficult decision to pursue fetoscopic endoluminal tracheal occlusion (FETO)—a procedure in which a balloon is inserted into the trachea of the fetus and inflated to block the trachea. The procedure forces fluid into the lungs of the fetus helping them to grow and mature. This procedure is still rather investigational and has significant risks: uterine rupture, fetal death, infection, operative complications, early labor, and potential failure. The balloon is to be left in place for several weeks and candidates must stay within minutes of Mayo Clinic during this time period to be closely monitored and in the event of an emergency. There was also no guarantee that they would be candidates for the procedure.

Many tests later—including many ultrasounds, MRI, an amniocentesis, echocardiogram, among others—Jon and Megan were informed their baby was a candidate for the procedure.

FETO is performed in very few locations across the United States, as hospitals and clinics need FDA approval, and it is only performed in the most severe cases of CDH. The deciding factor for Megan and Jon: Mayo Clinic has a doctor who has been performing the procedure for decades across the world and has experienced great success.

The procedure would once again prove successful.

Elena was born without much complication, but she required immediate intubation and respiratory support in the two days leading up to her hernia repair surgery. She had a very severe hernia that they assumed would require a patch to close. Doctors also indicated that her diaphragm would never function as a diaphragm, but that the patch would be used to keep her abdominal organs from coming up into her chest cavity once again. They wouldn’t know the extent until they made the incision.

Megan with Elena (Photography by Broken Arrow Photography)

“I was very nervous,” Megan said. “They were going to cut open my little baby. Surgery is always a risk. There was a very real possibility that I would never see my baby again.

“It was pretty traumatic.”

But the surgeon was pleasantly surprised. They were able to move Elena’s organs into their correct places and were able to use her diaphragm tissue to close the hernia.

“It was amazing,” Jon said. “Simply amazing.”

The surgeon said Elena did very well, but warned that things may get worse before they get better. But Elena didn’t waiver and continually amazed doctors and defied the odds. There is a chance it will herniate again and she may need another surgery. But recovery is going very well.

Elena does not have any heart abnormalities. Initially she was diagnosed with pulmonary hypertension, but that has since subsided.

Every congenital diaphragmatic hernia case is variable and doctors need to be ready for a variety or potential problems but little intervention was needed as Elena exceeded expectations.

Doctors told Jon and Megan that Elena would have been in a very different state without this procedure.

Jon and Megan with Robbie and Elena (Photography by Broken Arrow Photography)

“We are so lucky,” said Megan. “The doctors and nurses are incredible—they have become our family. We are very confident in the care Elena has received.

“We are so fortunate to live near a world-class facility like Mayo.”

After arriving in Rochester for the procedure, Mayo Clinic social workers recommended Megan and Jon call the Ronald McDonald House. They knew about the House, but they did not know if they would be able to stay because their child was not yet born. They learned that parents receiving care at Mayo for fetal surgery and high risk pregnancy are able to stay at the House.

The family was 43rd on the waiting list and waited 12 days for a room—an issue the House hopes is reduced with its expansion. Because Megan and Jon did not have enough money for an extended stay in a hotel, the family contemplated staying in a small camper until there was a room at the House, which would not have been the most comfortable living arrangement at 30 weeks pregnant.

“More rooms and less of a wait time is huge,” Megan said. “I honestly don’t know what we would have done without the House.”

And with their two-year-old son Robbie roaming the halls, the House truly became a home away from home and a refuge after long days and weeks. Extended family members visited and looked after their son while Jon and Megan were with their daughter in the hospital and the House activities made it easy to spend time together as a family.

Megan with Robbie and Elena (Photography by Broken Arrow Photography)

“Robbie loves the House,” said Megan. “He has made so many friends.”

“I couldn’t imagine being cooped up in a hotel room for all this time,” Jon said.

The support from other guest families is what meant the most to Megan. They felt very fortunate to be able to bond with other families in similar situations as theirs.

In addition to the other children and families, the House is made a home by the hundreds of volunteers who donate their time.

“You come in and the volunteers know you by name and they know your story,” said Megan. “They want to be here. They truly love what they’re doing.”

And the House is fresh off of its capital campaign, which raised more than $17 million and received more than 1,600 unique gifts to add more guest rooms and community spaces.

“So many people who donate to the House or volunteer here will never even use this facility,” Jon said. “It’s incredible…”

Jon with Elena (Photography by Broken Arrow Photography)

Elena did end up setting records, as she went home with her parents after only four weeks, which was several weeks ahead of the original timeline.

“I don’t know if we would have felt like this journey was possible without the Ronald McDonald House,” said Megan. “We would have tried, but it would have been so much harder.”

“We wouldn’t have been able to have the life-saving procedure for our baby without the House,” Jon said.

“It’s more than we could have ever imagined,” Megan said.

“And now it feels like…I can’t even put it into words…it feels like our home,” said Jon.

Jon and Megan with Elena and Robbie (Photography by Broken Arrow Photography)

Sadie’s Smile

Sadie (Photography by RichAlan Photography)

Ever since Sadie was a baby, she had respiratory issues related to swallowing difficulties. But, because of the Ronald McDonald House of Rochester, Minnesota…she never stopped smiling.

“Sadie is excited when we leave for Rochester,” said Sherry, Sadie’s mom. “Because it’s not about the clinic—it’s about the Ronald McDonald House. She associates the House with the clinic. It makes everything easier. She focuses on the House.

“She loves the staff, the activities and the playrooms. And she really loves the shuttle drivers who take us from the House to the clinic.”

And Sadie isn’t the only one.

“I cannot put into words how I feel about the Ronald McDonald House,” Sherry said. “It’s so wonderful. It’s hard for me to put it into words without getting emotional.”

Sadie (Photography by RichAlan Photography)

When Sadie was several months old, she was diagnosed with a laryngeal cleft—a rare congenital abnormality affecting the larynx and esophagus, resulting in difficulty swallowing, among other signs and symptoms. It occurs in approximately 1 in 20,000 live births and is more common in boys than girls. When Sadie was first diagnosed, Sherry was told, “It’s something we [doctors] always look for, but never see.”

But it was Sadie’s diagnosis.

“Hearing her diagnosis was difficult, but hearing it was a congenital diagnosis was even more difficult,” Sherry said. “I did a lot of questioning myself.”

In an attempt to gather additional information on next steps for Sadie, Sherry and Sadie visited several specialists, some of whom did not agree with the initial diagnosis. Sadie’s symptoms worsened and she suffered from pneumonia twice—something was definitely wrong. When Sherry was debating taking Sadie to Mayo Clinic, one of Sadie’s therapists strongly encouraged Sherry to do so.

Sadie (Photography by RichAlan Photography)

The doctors at Mayo Clinic agreed with the original diagnosis. After a great deal of testing, Sadie had surgery to repair the cleft. Seven months later she had another surgery to revise the repair.

“The doctor who did the surgery was great—it’s what he does,” Sherry said. “We were told it is his area of expertise. And it is such a unique culture at Mayo. Sadie was more than a diagnosis—doctors and nurses knew her by name. We received incredible care.

“And she’s doing very well.”

But it may not have been possible without the Ronald McDonald House of Rochester.

“I don’t know what we would have done without the Ronald McDonald House,” Sherry said. “We may not have been able to travel back and forth to Mayo Clinic. Her health was my top priority, but there were so many other challenges and obstacles.

“The House alleviated so much stress.”

Sherry knew about Ronald McDonald Houses before arriving in Rochester, but said “there is something different about the Ronald McDonald House of Rochester.”

“It’s the people,” said Sherry. “The staff is amazing—the most caring and compassionate people you could ever imagine.

Sadie (Photography by RichAlan Photography)

“I also think the volunteers don’t fully realize the impact they have on the lives of the people who stay at the House. Anything we needed—no matter what it was—volunteers would say: that’s why we’re here.

“They help make it so you can just focus on your child.”

The Ronald McDonald House of Rochester recently opened its expansion. The expanded House has 70 guest rooms and additional community spaces. It is the largest House in the state of Minnesota and one of the largest in the country and the world.

“We followed the progress of the expansion from the very beginning,” said Sherry. “It is so beautiful and will be so appreciated by the families who stay at the House.”

Sadie is doing well and has only follow-up appointments at this point.

“I can’t fully explain what the House did for my family,” Sherry said. “It’s not only the resources the house provides—it’s the other families and their stories. It’s a life-changing place.

“And if everybody everywhere was treated the way you are treated at the House…the world would be a very different place.”

Sadie (Photography by RichAlan Photography)

You Can’t Spell Special Without P

As Mandy looked at her son, Preston, she said, “P is just special…all the way around.”

“Preston came into the world 10 days early—with the biggest brown eyes—and stole everyone’s heart,” Mandy said. “He’s the sweetest little boy, but tough and fiercely independent. He does things to the music of his own anthem.”

As three-year-old Preston grew up, Mandy and his dad, Andrew, knew something was wrong. Preston was having odd medical issues—extreme thirst and urination were the primary symptoms. The pediatrician tested him for diabetes, but his blood panels didn’t support the diagnosis. His eye started to drift, so he visited a pediatric ophthalmologist.

No answers.

“He looked normal, he acted normal and all of the testing was normal,” Mandy said. “It didn’t add up.”

Their new pediatrician directed them to an endocrinologist—a physician who specializes in disorders of the endocrine system, such as diabetes. The endocrine immediately knew something was wrong and linked the issues, diagnosing Preston with diabetes insipidus, which deals with the pituitary gland. But there were only a few reasons for a three-year-old to contract these conditions…and one was a brain tumor.

Mandy, Drew, Preston, Andrew (Photography by BE Creations Photography Jolene Williams)

The endocrine ordered a MRI and a water deprivation test—water is withheld from the patient and their blood is checked—for the next day. Less than 30 minutes into the four-hour test, they discovered the brain tumor. Less than one hour later, Mandy and Andrew were meeting with a specialist and thinking and planning Preston’s surgery.

The lone hesitation: it is rare for a three-year-old to have Craniopharyngioma. Craniopharyngioma is a rare type of brain tumor derived from pituitary gland tissue. It can present at any age, but its peak incidence is 5-14 years old. Doctors believe Preston was born with it or it developed shortly after his birth.

Three months after surgery, a MRI scan showed new growth—it required radiation. Radiation is not ideal for anyone, but it is especially risky before a child turns eight years old.

Drew and Preston (Photography by BE Creations Photography Jolene Williams)

“We wanted to wait until he was older, but we didn’t have time to wait,” said Mandy. “The tumor was aggressive; we needed to act. Waiting wasn’t an option.”

Preston’s tumor was on his optic nerves and carotid artery—it was unlikely surgery would be able to remove it all. Three months after surgery—in which he lost his pituitary gland—the tumor started growing back. And it was significant in size.

The situation forced the family to travel to the world-renowned Mayo Clinic for proton beam radiation therapy. Proton beam is deemed to be the best radiation for young children and Craniopharyngioma tumors. And Mayo Clinic is one of only 26 operating proton beam centers in the country and one of only six centers in the Midwest.

“We were very thankful,” Mandy said. “Mayo Clinic has only been a proton beam center for a few years…I don’t know where we would have gone.”

As Mandy said, Preston “flew through proton radiation like an absolute superhero.” He recovered really quickly and has suffered very few side effects. The family waited for the negative side effects for weeks…but they never came. Prior to surgery, Preston was blind in one eye because the tumor crushed his optic nerve. There are future concerns with radiation—more vision loss, hearing loss, strokes, cognitive learning issues, secondary tumor. He will need frequent scans for the rest of his life, but life is whats important.

“It’s overwhelming to think that he barely had a chance at life,” said Mandy. “His life is altered, but he has that chance.”

Losing his pituitary gland means his body cannot control its hormones and functions. Preston will need medication every day for the rest of his life and constant follow-up appointments with scans and blood work, but Mandy said, “Preston is only alive because of modern medicine.”

The family was not familiar with the Ronald McDonald House of Rochester. They had minimal exposure to a Family Room, but “the House is very different.” After a nine-hour consultation during their initial visit, nurses said, “You need to go to the Ronald McDonald House.” The only question for Mandy and Preston…would a room be available?

There were 38 families on the waiting list when Mandy added her name. But only five days later there was a room.

Mandy, Drew, Preston, Andrew (Photography by BE Creations Photography Jolene Williams)

Mandy and Preston were in Rochester without the rest of their immediate family for the majority of his care. Mandy said her “feeling of comfort and safety” at the House enabled Andrew to stay home with their eldest son, Drew, and keep his schedule as normal as possible. And Andrew was able to continue working to support the family financially.

“I don’t think people fully understand,” Mandy said. “It’s an out-of-control feeling when your child is sick—it’s so unbelievably exhausting to deal with the unknown. It’s almost impossible to be a good parent and a family.

“The Ronald McDonald House made it possible.”

And now the House is making it possible for even more families following the grand opening for its expansion in May. The House increased from 42 to 70 guest rooms and added community spaces for children and parents to exercise and rest.

“I couldn’t be happier for all of the families that will be able to stay at the House because of the expansion,” said Mandy. “When you are away from home with kids, it is tiring and costs money. The House takes away that hardship. It becomes home.”

Mandy said she has connected with many guest families, volunteers and staff. The House is a “neat and unique support system” for families. And it has had a lasting impact on Preston.

“When we talk about leaving, Preston is sad,” Mandy said. “That’s so incredible. A three-year-old…who is here for radiation…wants to come back.

“It speaks to the love that we feel at the House.”

And every time they come back, Preston says, “I’m going to see my friends.”

Preston continues to amaze Mandy and Andrew with his no-care attitude as it pertains to his medical condition. He walks into Mayo Clinic like he owns the place. His floppy mop of curls charm everyone into falling in love with him…and giving him what he wants.

The focus has shifted from survive to thrive. Preston is preparing for preschool, but it’s hard to gauge his baselines. But all of that is secondary to the family as it moves forward.

“He’s here; walking and talking—nothing is slowing him down,” said Mandy. “It is not a destination. It’s a journey.

“But we are so thankful.”

Mandy, Drew, Preston, Andrew (Photography by BE Creations Photography Jolene Williams)

Greyson’s Waiting Game

We would like to extend our heartfelt sympathy to Reeanne and Ridge, family and friends, as 21-month-old Greyson passed away on Friday, Sept. 13, 2019, at the Belcourt Hospital in Belcourt, N.D. His life was far too short, but his spirit will be with us forever.

Reeanne (mom), Greyson, Ridge (dad), Parker (sister) (Photography by Nikki’s on Main)

Some people say the hardest thing to do in life is wait…but that’s all Greyson and his family could do.

When 18-month-old Greyson was born, his parents were left waiting for good news. Because the very next day, he was diagnosed with a heart condition that would require surgery before he turned six months old.

Greyson needed tetralogy of Fallot (TOF) repair after being born with multiple heart defects. He suffers from pulmonary valve stenosis—a narrowing of the valve that constricts blood flow to his lungs. He has ventricular septal defect (VSD)—a hole between the left and right ventricles, allowing deoxygenated blood to be mixed with oxygenated blood and circulate the body. He has an overriding aorta—a slight shift causes the aorta to get both oxygenated and deoxygenated blood. Greyson also has right ventricular hypertrophy—his heart is working hard to pump, causing the right ventricle to thicken and the heart to weaken.

Two days after surgery, Greyson fell into cardiac arrest, coded and required CPR (cardiopulmonary resuscitation) and ECMO (extracorporeal membrane oxygenation), which allowed his heart to rest.

That’s when Mayo Clinic placed him on the transplant list for a new heart.

“You need keep moving forward every day,” said Reeanne, his mother. “Live every day the best you can. Greyson has been through so much; we have been through so much.”

Greyson was on the transplant list for 362 days and it was 362 days filled with many ups and downs. Following his initial scare after surgery, his left ventricle was struggling and needed support from a LVAD (left ventricular assist device). Three weeks later, on the day Greyson was supposed to go home, he was intubated once again. Shortly thereafter, he was connected to a Berlin Heart pediatric ventricular assist device.

The Berlin Heart device mechanically supports the heart and enables patients to be more mobile, as it can function without a power source for 30 minutes. ECMO machines, on the other hand, cannot leave their power sources.

Greyson suffered multiple strokes and seizures after transitioning to the Berlin Heart—which is common for his condition—but it drastically improved his quality of life.

“He was sitting up, eating, playing, learning to crawl and stand—he should have been doing these things a long time ago,” Reeanne said. “But the device helped him do it. It was a positive—a lifesaver—for Greyson.”

Greyson and Parker (Photography by Nikki’s on Main)

The expertise of the doctors at Mayo Clinic is why Greyson and his family left their hometown for Rochester. His parents have been very impressed with the care he has received.

“Mayo is wonderful,” said Reeanne. “The doctors and nurses treat Greyson very well and are very kind. They are our family.”

The initial waiting game was when the family first arrived in Rochester. The family didn’t know how long they would be in town, so they didn’t pursue the Ronald McDonald House initially. But when the doctors said Greyson would be inpatient until he received a transplant, they called the House.

And, like so many others, the family was placed on the waiting list.

One week later, Reeanne and Ridge moved into the House; Greyson remained inpatient. Reeanne said staying at the House without their son was an interesting dynamic, as they spent the majority of their time at the hospital. But the House was a place for them to recharge and replenish…before they did it all again the next day.

“The House is a great place and very helpful—a comfortable place to sleep and eat home-cooked meals,” Reeanne said. “Other children and families we have met—we support them and they support us. It’s nice to have that community in this situation.”

The community extends to the volunteers as well, as Reeanne said they are “awesome and kind people.”

And while they were on the waiting list for only one week, Reeanne is very excited about the expansion, which opened in May and increased the number of guest rooms from 42 to 70. It also added much-needed community spaces for children and adults alike.

“The expansion makes us very happy,” Reeanne said. “We have met many families who have been on the waiting list for a long time and some who went home without ever experiencing the House. The House makes every situation easier and now it will do so for many more families.”

Greyson is no longer playing the waiting game; he received a heart transplant this past spring. He still faces a lengthy recovery—it is all dependent on how he responds.

But the most important thing is that his future is bright.

“We don’t have any expectations,” said Reeanne. “We are taking it day by day.”

Reeanne, Greyson, Ridge, Parker (Photography by Nikki’s on Main)