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)

Josiah’s 3,000-Mile Journey

Josiah (Photography by Fagan Studios)

It’s hard to be away from home. It’s even harder when home is far away.

Zuren and Josiah are from the small island of Trinidad. It is home to 1.27 million people and is 1,833 square miles—2.33 million people and 4,531 square miles less than the Twin Cities. But it is home.

“I am originally from the Dominican Republic, but my husband is from Trinidad,” said Zuren. “It is a beautiful country with kind people.”

And it is more than a hop, skip and a jump away from Rochester, Minn.

“My husband stayed in Trinidad with our two older daughters,” Zuren said. “It’s sad. But we need to be here for Josiah.”

Josiah was a happy, healthy baby. His mother described him as “normal as any other kid his age” and “never sick.” But all of that changed when he became ill with what the doctor in Trinidad classified as a severe cold and flu.

Josiah was given Vitamin C and an expectorant and prescribed antibiotics; the doctor said he would be better in one week. But soon the medication was gone and the illness was not. The doctor prescribed stronger medication, but he didn’t improve.

Shortly thereafter, Josiah developed mouth sores and swelling in his gums. The doctor classified it as a type of hepatitis infection. But treatments for his mouth did not work and it was worse every day. He started running fevers as well.

Josiah and Zuren (Photography by Fagan Studios)

Josiah was admitted to the private hospital in Trinidad for one week. He developed a stomach infection—perhaps caused by taking too many antibiotics. He was discharged, but his condition worsened at home.

“It was strange,” said Zuren. “We still didn’t know what was wrong, but we knew something was wrong…really wrong.”

Josiah and his family made the trek to the children’s hospital because it had a greater blood supply than the private hospital. He received blood tests, which revealed a high inflammation marker and other abnormalities. Additional tests did not reveal much information. Restless nights on the hospital floor in his quarantined room and long days trying to keep an active toddler on a hospital bed were trying times. And days turned into weeks.

The doctor told them it wasn’t looking good—he said he thought it was cancer.

The situation left Zuren and her husband with so many questions.

“What is wrong with Josiah?”

“Why does he have so many fevers?”

“Why aren’t they going away?”

There were no clues.

The fevers were controlled by ice water, cold cloths and medication, but would return stronger as soon as the medication wore off.

“I was so worried,” Zuren said. “He stopped eating and drinking—he was getting smaller every day. He cried until he fell asleep, but he couldn’t sleep well because he was in so much pain—we had to feed him PediaSure with a syringe to the back of his throat and use rags soaked with cold water to try and soothe the pain of the ulcers in his mouth.

“Nobody knew what was wrong.”

The children’s hospital said there was nothing else they could do, so Zuren and her husband traveled across the country to see more doctors. As energy, funds and hope were running low, one doctor said they needed to travel to the United States. He told them Josiah is neutropenic, but he didn’t have the tests, machines or medication he needed to treat it.

Neutropenia occurs when a person has too few neutrophils—the most abundant type of white blood cell—making those affected more susceptible to bacterial infections. It is very rare and can be life-threatening if it is not treated.

Josiah (Photography by Fagan Studios)

That’s how the family ended up at the Mayo Clinic in Rochester, Minn.

Their initial visit to Rochester lasted one month—their first experience with winter conditions—but they didn’t stay at the Ronald McDonald House of Rochester, Minnesota. Because they didn’t know it existed. Instead, the family rented a room in the building across the street from the House.

“I watched families come and go every day,” said Zuren. “I started dreaming—and praying—about staying at the House.”

Mayo Clinic prescribed a steroid and Josiah improved. He was a happy, healthy boy once again. Josiah and his family returned to Trinidad.

But soon the medication was gone and the illness was not..again. And he had the exact same symptoms.

Mayo Clinic told the family to return to Rochester for additional testing and treatment, but they had exhausted all of their resources. They didn’t have the money.

“I did not know how we would survive,” Zuren said. “We did not have any funds. But my husband said the Ronald McDonald House welcomes children and families who do not have money; they will help you.

“We called as soon as we were in Rochester.”

The family was on the waiting list for nearly two weeks before they received the call for a room. But it happened and it was more than they imagined.

“We walked outside every morning and saw the heart with LOVE & HOPE,” Zuren said. “The House gave us hope when we didn’t have any and gave us love when we were in need.

“It helped Josiah forget he was sick.”

The House recently cut the ribbon on its expansion—it is now a 70-room House with additional community spaces. And the House continues to welcome extended family members to stay and support their family in difficult times.

Josiah’s uncle (Glen), Josiah and Zuren (Photography by Fagan Studios)

“The expansion is so beautiful,” said Zuren. “There are so many families like us who need the House. Josiah’s dad cannot be here, so his uncle from New York is staying with us.

“It is stressful being in a new city and hospital; we couldn’t do it without him.”

And it’s not only the place, but the people. Volunteers make the House a home and provide families with comfort and care each and every day of the year.

“A smile may seem like something small, but to me a smile is like a fine diamond,” Zuren said. “They have beautiful hearts. And they care. It’s nice to know there are still people that care, even though they don’t know me or my family or my country very well. They care.

“This is a true friend family. Only a true friend will help you when you are in need.”

But Josiah’s journey is not over.

The additional tests revealed his body develops antibodies that fight his white blood cells; they die when they reach his blood. Doctors believe Josiah will need medication for the rest of his life. There is a slim chance he will not need medication as an adult, but only time will tell.

Zuren does not know if they will need to return to Rochester again—it’s unpredictable. They need to determine what Josiah needs to survive outside the hospital. But she is certain of one thing: Ronald McDonald House is their home.

“I can’t explain what happens inside the House,” said Zuren. “There is so much support, which is exactly what people need in these situations. There are so many parents who feel helpless and so many children who are in pain.

“I will never forget the Ronald McDonald House of Rochester—it will always have a special place in my heart. It is a place I will support for the rest of my life.”

Zuren and Josiah (Photography by Fagan Studios)

Enduring Eli

The definition of endure is to remain firm under suffering or misfortune without yielding. Another definition of endure is Eli.

“Eli amazes me,” said Samantha, Eli’s mom. “He has been so strong and brave.”

“Eli is resilient,” said Jason, Eli’s dad. “He handled it better than any of us.”

It was a typical day, as seven-year-old Eli and his parents prepared for youth baseball. But Eli opted to stay home—he wasn’t feeling well. His condition worsened and he experienced vomiting, neck pain and headaches. Following a visit to the emergency room and a consultation with the pediatrician, a CT scan confirmed their worst fear—a brain tumor.

Eli had immediate surgery to remove the softball-sized tumor. The tumor was believed to be slow-growing and not life-threatening—a one-time surgery and physical therapy. But three months later…it was back. And the outcome was bleak. Doctors believed the second surgery would be life-altering and difficult to make a full recovery.

Jason (dad), Eli, Samantha (mom) (Photography by Pretty Little Picture Photography)

Jason and Samantha pursued a second opinion from Mayo Clinic. The pediatric neurologist and oncologist needed the results from his biopsy to verify the type of brain tumor—because it is so incredibly rare.

Eli was diagnosed with a grade II atypical meningioma. The reason it is rare is because meningioma typically develops in adult women who are 50 years old or older and it is benign. Eli is a seven-year-old male and grade II is neither benign, nor malignant—it’s both. It has characteristics of both cells and can act both ways. It’s unpredictable.

And while it would require a second surgery, the neurosurgeon at Mayo Clinic was more optimistic about its outcome. As an expert in the field and one of the first to publish an academic paper on the specific condition, he was the man for the job.

Jason, Eli, Samantha (Photography by Pretty Little Picture Photography)

“The neurosurgeon confirmed it would require another surgery, but the outcome sounded for more positive,” Samantha said. “The road ahead was long and hard and filled with obstacles; Mayo altered our path.”

“The neurosurgeon is a miracle worker,” Jason said. “Eli was moving his limbs hours after surgery—hours after his brain was worked on. It was like nothing had changed.

“It was a miracle.”

And after the miracle surgery was performed by the neurosurgeon, Eli began proton beam radiation therapy. There are only 27 proton beam therapy centers in the United States and two are Mayo Clinic facilities—Rochester and Phoenix, Ariz.

As described by Samantha and Jason, typical radiation goes all the way through an area, regardless of vital organs, and radiates an entire, larger area. Proton beam radiation is specialized because the radiation is more precise. Doctors are able to control where the radiation goes and how far it goes, minimizing the effect on surrounding areas. The intensity can be increased or decreased more easily as well.

Jason, Eli, Samantha (Photography by Pretty Little Picture Photography)

It’s a lot less devastating in terms of development.

“Eli has very few side effects,” said Jason. “It’s like nothing changed. When you think about the tumor size and type…it’s amazing.

“The oncology, radiation, surgery—Mayo Clinic is top-notch, professional…perfect.”

In 2018, 26 families stayed at the Ronald McDonald House of Rochester, Minnesota for proton beam radiation therapy. Family stays for proton beam radiation often exceed the average stay, which was 22 nights in 2018.

Eli and his parents stayed at the House for 56 nights.

“We weren’t familiar with the Ronald McDonald House,” Samantha said. “You see it from the outside, but it’s not until you walk through the front doors that you realize everything the House has to offer. It’s such a special place.”

But when Eli and his parents arrived in Rochester and called the House…28 families were on the waiting list. It was 10 days before a room opened up.

Jason, Eli, Samantha (Photography by Pretty Little Picture Photography)

And for the next two months it was home.

“It was wonderful for Eli to be with other kids,” said Samantha. “He needed that interaction. And he made so many friends.”

“It’s not a normal situation, but in difficult moments, the House was home, his friends were family,” said Jason. “A rough day ends with happy memories.

“It’s therapy for parents as well. It’s good for all.”

Jason and Samantha also recognized the volunteers and staff, who “fill the House with love and will do anything for you.”

“It’s emotional,” Jason said. “The people here truly care and the volunteers are the cream of the crop. They give their time and energy to children and families who need it most.

“It’s amazing.”

And now…more families will experience the love. The Ronald McDonald House expansion—which increased the number of guest rooms from 42 to 70 and added multiple community spaces—celebrated its grand opening the week of May 13.

Jason, Eli, Samantha (Photography by Pretty Little Picture Photography)

“It’s so important,” Samantha said. “Traveling and staying for medical care is a major expense. The House makes a difference for families financially and is so much more than a room. It’s a community. And some families miss out on it.”

“It means more love will spread to more people,” Jason said.

Eli still faces challenges as he recovers from surgery, but all signs are pointing up. He will return for follow-up appointments and tests, but the family has one goal: return to normalcy, as much as possible.

And thanks to Mayo Clinic, the Ronald McDonald House and the Rochester community, it’s more than possible—it’s probable.

“The House served us so well,” said Jason. “It’s a hard spot in life, but it was not as much of a struggle because of the House. It’s something I will never forget.”

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)

Bambenek named Hospitality Associate

Nancy Bambenek, Hospitality Associate

The Ronald McDonald House of Rochester, Minnesota, is pleased to announce that Nancy Bambenek will move into a new role as Hospitality Associate, effective May 6, 2019.

Hospitality Associate is a newly created position to support the growth of the House mission as it expands to serve 70 families each night. Hospitality with Heart is a core value of the House and Nancy will focus on this core value in her new position.

Nancy will work in concert with the Volunteer staff and Family Services staff to make families and visitors feel welcome. She will connect with the local community and share local entertainment and recreation options to families during their stay as well.

Nancy served the past 10 years as a House Manager and is excited to move into her new role as Hospitality Associate.

Please join me in congratulating and supporting Nancy as she moves into this new role at the House.

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.

Ronald McDonald House of Rochester receives 2019 Remarkable Impact Grant

Infographic listing all Chapter recipients of Remarkable Impact Grants and program names

The Ronald McDonald House of Rochester, Minnesota (RMHMN), received a $50,000 Remarkable Impact Grant from Ronald McDonald House Charities (RMHC) through the generosity of AbbVie, which funded the grants, to expand its fresh and healthy food program.

The RMHMN program—which has a working title of Keepin’ It Fresh—will transform a current space at the Ronald McDonald House of Rochester into a co-op with fresh food, dairy and more for guest children and families. It will complement the current meal and food programs with perishable food items and is a long-term commitment to the health and well-being of House guests.

“We are excited to receive this grant to support a basic need for our guest families – access to protein and fresh produce – along with other perishable items families need to prepare nutritious meals while staying at the House,” RMHMN Executive Director Peggy Elliott said.

The Remarkable Impact Grants were awarded to Houses proposing programs that implement innovative ways to address the unmet needs of children and families and fit one of the following categories: wellness and nutrition, child enrichment, addressing the needs of unique populations, family support, before and after the Ronald McDonald House experience. The $25,000 or $50,000 grants were awarded to 29 RMHC Chapters across the United States as part of a $1,325,000 grant pool.

The food co-op qualified under the wellness and nutrition category. It will be completed as part of the four-month renovation to the existing House following the grand opening of its expansion project, which is set for the week of May 13.

The RMHMN previously received a $3.3 million grant on behalf of AbbVie in support of its expansion project, which was part of a $100 million donation from AbbVie to RMHC. As part of that donation, $2 million over the next two years has been allotted to support the Remarkable Impact Grants program.

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 about the expansion, please visit www.rmhmn.org.

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)

Another May Milestone: Ronald McDonald House Grand Opening Next Month

Ronald McDonald House of Rochester, Minnesota, expansion, as seen from a time-lapse camera on Second St. SW

The Ronald McDonald House of Rochester, Minnesota announced at Wednesday night’s Annual Meeting and Volunteer Appreciation Dinner that the grand opening for its expansion project will take place the week of May 13.

The week will include a public open house from 4-6 p.m. on Friday, May 17.

“The past year has been full of anticipation,” Executive Director Peggy Elliott said. “It’s very exciting. And it wouldn’t be possible without the overwhelming support of volunteers, donors and the entire Ronald McDonald House Community. We have so much to be grateful for.”

The grand opening will happen a little more than one year after groundbreaking, which was announced at the 2018 Annual Meeting and Volunteer Appreciation Dinner. It is also the result of more than a decade of planning and five years since the Board of Trustees voted to expand on the existing site.

“We have been fortunate to have outstanding Board and Committee leadership from the very beginning of this process,” said Elliott. “And our trusted construction partners, led by Knutson Construction, Egan Company and Harris Company, have made the entire building process an extremely positive experience.”

The expansion, which increases the number of rooms from 42 to 70, will also include a small indoor motor space, indoor and outdoor play areas and underground parking. All aspects are being completed with modern construction, creating welcoming and comfortable areas for children and families.

The expansion makes the Ronald McDonald House of Rochester the largest Ronald McDonald House in the state of Minnesota.

“It has been an incredible journey,” Elliott said. “We can’t wait to celebrate the grand opening with those who have made this possible and to begin welcoming more children and families.”

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 about the expansion, please visit www.rmhmn.org.

Organick named Volunteer Associate

Paige Organick, Volunteer Associate

The Ronald McDonald House of Rochester, Minnesota, is pleased to announce that Paige Organick has joined the staff as Volunteer Associate, effective April 1, 2019.

Volunteer Associate is a newly created position to support the growth of the RMHMN mission as the House expands to serve 28 more families each night. Volunteers truly make the House a home and Paige brings great enthusiasm, excitement and experience to this new role.

As Volunteer Associate, Paige will work closely with the Volunteer Director to recruit, train and celebrate the volunteers who provide care and support to the children and families the House serves. Paige will also work closely with Volunteer and Special Event Committees, as well as other staff, to grow the volunteer base in the coming years.

Originally from the Pacific Northwest, Paige relocated to Rochester in 2017. She graduated from Whitman College in Walla Walla, Wash., with a Bachelor of Arts in Sociology (Magna Cum Laude with honors). Paige most recently worked as a Clinical Research Assistant at Mayo Clinic and as a Wellness Coordinator at Madonna Living Community.

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.