Tony DeGange never thought much about the bump on his head until his barber mentioned that it might be a problem. It was. The bump turned out to be a brain tumor. But his Mayo Clinic team successfully removed it, and now Tony’s back to enjoying his retirement, bump-free.
retired auto parts salesman and stock car mechanic, 69-year-old Tony DeGange always
has had a head for engines. But he never envisioned the possibility of actually
using something from inside his head to power one of his motorized creations.
Thanks to a souvenir he received after Mayo Clinic surgeons successfully removed his grapefruit-sized brain tumor, that’s now one of the pursuits the Valdosta, Georgia, native is considering.
working on a go-kart engine for the son of a friend of mine, and I think I can
use it as a filter for the carburetor,” Tony says, of the piece of
titanium mesh that was placed after surgery to serve as a temporary seal
between his skull and brain. “We’ll give it a try and see how it goes.”
A timely haircut
years, Tony was aware of a bump on his head. He never paid much attention to
it, though, until his barber pointed out that it seemed to be changing. “He
said: ‘Tony, I think it’s growing. You better have it looked at,'” Tony
Tony saw a local neurologist and neurosurgeon, and they confirmed it was more than a bump. Tony had a meningioma — a tumor that forms on membranes that cover the brain, just inside the skull. Many meningiomas are slow-growing, and most are not cancerous.
another opinion, Tony visited a different medical center. The treatment recommended
there was not appealing. “(The surgeon) described a technique that would
leave me with an open wound for quite a while,” Tony says. “I just
thought there had to be something better.”
“If something wasn’t done, he would definitely have had mobility deficits in his face, arm and leg.”
Rabih Tawk, M.D.
On the advice of a neighbor and encouragement from his wife, Maxine, Tony decided to visit Mayo Clinic in Florida. “I had always heard that Mayo Clinic was the place to go, and our neighbor had a terrific experience there, so I thought we should give it a try,” Maxine says. “I’m glad we did.”
was a timely decision. Tony’s care team at Mayo Clinic found that his tumor not
only was large, it was invading critical areas of his brain. Soon it would have
a serious impact on his health and quality of life.
tumor had grown through bone, invaded brain tissue, and it was pressing on very
important areas of his brain that affect motor function,” says Rabih Tawk, M.D., a neurosurgeon who was part of
Tony’s Mayo care team. “If something wasn’t done, he would definitely have
had mobility deficits in his face, arm and leg.”
plan also would involve skull reconstruction that included a customized
titanium implant to preserve the original shape of Tony’s skull. Sarvarm TerKonda, M.D., a Mayo Clinic reconstructive
and plastic surgeon, joined the care team to address Tony’s appearance.
big concern was whether Tony’s tumor had invaded his scalp,” Dr. TerKonda
says. “It was great news when we reviewed his scans and realized it hadn’t.
That way, we could save his entire scalp, use it for reconstruction, and his
hair would grow back.”
Tony’s surgery was scheduled for May 8, 2018. That day, it took surgeons eight hours to remove the tumor and then implant the mesh to protect his brain from swelling. Tony went home three days later. He returned to Mayo Clinic in July for the reconstructive surgery. In August, Jennifer Peterson, M.D., a Mayo Clinic radiation oncologist, used a gamma knife procedure to remove a small bit of tumor that remained.
“Here I am — good as new and happily enjoying retirement.”
September 2018, Tony was sporting a full head of hair and tinkering with his
souvenir in the mechanical shop where he works on his friend’s go-kart engines.
more than a year later, when Tony returned to Mayo Clinic for a visit to check
the status of his tumor, he received nothing but good news. There are no signs
that the tumor returned, no side effects from the surgery and no visible scars.
“Here I am,” Tony says. “Good as new and happily enjoying
Nick Saleum felt a painless lump in his left forearm. One doctor misdiagnosed the lump as a ganglion cyst or lipoma, but Nick noticed the lump growing and went to see another doctor. A biopsy revealed a rare, cancerous tumor: epithelioid sarcoma.
“Scanxiety” is how Nick Saleum, a
29-year-old Eau Claire, Wisconsin, resident describes waiting for his cancer
“You’ve got the scan on Friday, and then
you’re waiting the weekend until Monday comes along,” Nick says. “And,
yeah, it was pretty nerve-wracking.”
Nick landed in that anxious scenario in 2016,
when he was 26. Busy working, spending time with his girlfriend, and exploring
a newfound passion for photography and videography, Nick’s health wasn’t in the
forefront of his mind. Then one day, he felt a painless lump in his left
When he had it evaluated, a doctor told Nick that the lump was either a ganglion cyst or a lipoma — both noncancerous growths. But Nick noticed the lump growing and went to see another doctor who recommended a biopsy. The results revealed a very different diagnosis. The lump was a cancerous tumor called an epithelioid sarcoma — a rare, slow-growing type of soft tissue cancer. Nick’s tumor already had progressed to stage 3.
“Sarcomas are rare,” says Scott Okuno, M.D., Nick’s oncologist at Mayo Clinic Health System in Eau Claire. “More likely than not, you don’t have a sarcoma if you have a lump. However, there are certain signs that we always recommend that you get checked out. If you have an enlarging lump that is deep — not superficial, but deep — and larger than the size of a golf ball, you should be evaluated.”
Left untreated, a sarcoma can spread through
the soft tissues of the body. So after Nick’s diagnosis, Dr. Okuno and the rest
of his care team quickly developed a plan of action.
Mobilizing a team
A world-renowned expert in sarcoma, Dr. Okuno is the medical chair of Oncology for Mayo Clinic Health System in Northwest Wisconsin. He also sees patients at Mayo Clinic in Rochester. In addition to Dr. Okuno, Nick’s care team included a host of specialists — oncologists, radiation oncologists and surgeons — as well as other professionals who could help Nick navigate his cancer journey.
“We have the cancer guide, the social
worker who can help with financial issues and emotional issues. We have the chaplain.
We have a nutritionist. We are very lucky to have all of those services right
here in Eau Claire,” says Kaye Holt, a
nurse practitioner in Oncology.
“If I don’t talk and other people don’t talk, we really get nowhere.”
Nick was grateful to be able to receive most
of his treatments close to his home. But the experience was grueling as he
endured side effects from his treatment. “Everything just didn’t taste
good,” Nick says. “I thought it just tasted like eating cardboard for
the most part.”
As he went through cancer treatment, Nick learned
more about sarcoma. He began sharing his personal journey through online videos. Since then, Nick has
become an advocate — creating awareness, pushing for research funding, asking
doctors lots of questions and helping others through a Facebook group. He even
donated his tumor for epithelioid sarcoma research. “If I don’t talk and
other people don’t talk, we really get nowhere,” he says.
Weathering a recurrence
With therapy and regular monitoring, Nick’s recovery went well. But in November 2018, Nick felt a painful lump in his bicep. An MRI, then a biopsy, confirmed that the sarcoma had come back.
In January, Nick underwent a second surgery with Dr. Rose in Rochester to remove the new tumor. He also had radiation therapy before the surgery, as well as intraoperative radiation therapy — a plan coordinated by Sarah James, M.D., a Mayo Clinic Health System radiation oncologist in Eau Claire, in conjunction with her colleagues in Rochester.
The treatment Nick received for epithelioid
sarcoma was a significant step forward from the care provided to patients with
this disease in the past, according to Dr. James. “Historically, these
tumors were treated with amputation up front,” she says. “Limb-sparing
is standard now. Certainly, in the setting of recurrence, the limb-sparing
could only be done because we have experts here at Mayo to do that.”
“The Mayo Clinic team — they’ve been great to me. I can’t think of anyone else who could take up all this, so I’m in the right hands.”
Nick knows that the likelihood of recurrence
with his type of sarcoma is high, but that hasn’t dampened his spirits. His
care team says Nick never looks back, and his energy is focused on using his
situation to helping others.
“His passion for media and sharing his
patient experience is quite good and quite refreshing to see,” Dr. James
says. “My wish for Nick is for him to have a long, happy life, cancer-free
from now on.”
Today, Nick’s working hard to regain strength in his hand with ongoing occupational therapy sessions in hopes of one day getting back behind the camera lens. He also has follow-up appointments with his Mayo team every three to four months to monitor his condition. And he continues to be passionate about advocating for himself and others living with epithelioid sarcoma.
“The Mayo Clinic team — they’ve been
great to me. I can’t think of anyone else who could take up all this, so I’m in
the right hands,” Nick says. “I’ve got the upper hand at the moment.
Going through all this has made me a better person, a stronger person.”
Eleven years of constant pain had left Rose Boehmer worn down and discouraged. Then she met Robert Spinner, M.D., a neurosurgeon at Mayo Clinic, who not only identified the long-hidden source of her pain, he and his surgical team eliminated it — returning Rose to a full and happy life.
Boehmer had endured chronic pain for so long, she’d forgotten what it was like
to live without it.
“I have a condition called schwannomatosis,” Rose says. “It’s a rare form of neurofibromatosis that causes benign tumors to grow on my spinal and peripheral nerves.” Eleven years ago, one tumor in particular began to have a significant effect on Rose’s daily life. Although it went undiagnosed until recently, the tumor was on her sciatic nerve, and the agony it caused was extreme. “I was in constant pain,” Rose says. “I couldn’t do anything to get comfortable.”
down or sitting up — the pain persisted no matter her body position. “The
pain was actually worse when I lay down,” Rose says. “I was only
getting a few hours of sleep at a time, and as such, I was constantly irritable,
frustrated and angry.”
pain wreaked havoc on Rose’s mental and physical health. “Eventually, the
pain diminished my quality of life to the point where I didn’t feel like I had
anything to look forward to,” she says. “Before the tumor, gardening,
baking and photography had been some of my favorite hobbies. But the tumor had
made them too painful to enjoy. I couldn’t even sit and read a book because the
pain was too distracting. It had taken all of the joy out of my life.”
A long-sought answer
also was disheartened because the doctors and surgeons who she consulted near
her home in Mason City, Iowa, couldn’t offer any solutions. “At first, I
was given a different diagnosis by each doctor,” Rose says. “No one
could pinpoint a reason for my pain. Every appointment ended in disappointment.”
“(Dr. Spinner’s) knowledge, expertise and experience immediately put my mind at ease.”
a few minutes into her appointment with Robert
Spinner, M.D., chair of the Department of
Neurosurgery, however, Rose allowed herself to feel hopeful. “Shortly
after Dr. Spinner and his surgical team entered the room, my entire mood
changed,” Rose says. “His knowledge, expertise and experience immediately
put my mind at ease.”
it was what Dr. Spinner and his team did next, Rose says, that was most
meaningful. “After running some tests, they saw the tumor on my sciatic
nerve,” she says. “He then asked me if I’d like to have it removed
the following day. I couldn’t believe that 11 years of suffering was finally
going to end. My husband even started to tear up.”
Before coming to Mayo Clinic, Rose had been receiving care for two tumors on her spine. “Unfortunately no treatment helped my pain because those tumors were not causing it,” she says. “No one had looked beyond my spine until a local pain management doctor decided to run a broader MRI. That’s when they finally saw the tumor on my sciatic nerve. My local neurosurgeon, however, couldn’t tell where the tumor was in association to the nerve, so no one was comfortable removing it.”
Spinner was comfortable doing that surgery, and he explained to Rose how he and
his team could accomplish it. “I had complete confidence in him,”
with that confidence, Rose agreed to move forward. “Dr. Spinner actually
had to split the fibers of my sciatic nerve in order to get to the tumor and
remove it,” Rose says. “Before coming to Mayo, I was told it was a
procedure no surgeon could do. Dr. Spinner, however, knew exactly how to remove
the tumor. He and his team did what I had been told could not be done.”
surgery, the pain that had haunted Rose for more than a decade vanished. “It
was as if someone had flipped a switch. The nerve pain was completely gone”
Rose says. “I felt liberated and was finally comfortable again.”
A life without limits
relief Rose felt after surgery produced a dramatic shift in her world. “When
you’re in pain every minute of every day, that becomes the No. 1 worry at the
top of your list,” she says. “When that constant worry is suddenly
gone, your whole life completely changes.”
change has affected all of Rose’s activities — from getting ready in the
morning to enjoying time with her family. “I can stand in front of a
mirror and put makeup on, which is something I hadn’t done in years. I can go
to concerts and other events again, and get on the floor and play with my
grandchildren. Not to mention just how much different and easier it is to sleep
at night,” she says. “I feel like I can do anything I want to do now.
I don’t have any limitations.”
“Now I feel like I want to live to be 100 years old because it’s just been such a wonderful change.”
with the improvement in her physical health, the surgery has also had a
positive effect on Rose’s mental health. “Before surgery, I was reaching a
point where I thought I was going to have to live in pain for the rest of my
life. And quite honestly, I didn’t want to live a whole lot longer,” she
says. “Now I feel like I want to live to be 100 years old because it’s
just been such a wonderful change.”
that, Rose says, “there aren’t enough words” to thank Dr. Spinner and
the rest of her care team. “Everybody at Mayo Clinic is so professional
and so knowledgeable,” she says. “That alone made me feel so
comfortable. It’s such a benefit to have a whole team of people looking at you,
caring for you, diagnosing you. That made me feel much more confident of the
diagnosis I received. Dr. Spinner and his team at Mayo Clinic gave me my life
Dr. Spinner’s perspective, finding the source of Rose’s pain was just as
rewarding as removing it. “The biggest thing was finding the tumor at the
site of where her pain was, and then taking it out so that her pain would be
gone,” he says. “She had other tumors that weren’t causing her pain,
but we found the one on her sciatic nerve. Others had found her pain in the
wrong spot; we found it in the right spot.”
able to achieve that accurate diagnosis for her, coupled with Rose’s improved
lifestyle and emotional well-being, is all the thanks Dr. Spinner says he
needs. “It’s just awesome to know that my team and I have the potential to
do this for other people,” he says. “It’s why we do what we do.”
When doctors discovered a stage 3 tumor on John Magee’s pancreas that they deemed inoperable, John took his health into his own hands by seeking a second opinion at Mayo Clinic. That decision made all the difference. Today, John is cancer-free.
back, the signs were there. “I can see I was sick,” John Magee says. “Even
though I might not have felt it, looking back at old pictures, I looked it.”
the time of his annual physical exam in January 2016, however, John had begun
to feel it. “At the end of my physicals, my doctor always asks me the same
two questions, ‘John, do you feel sick in your body, or do you feel sick
emotionally?'” he says. “For the first time in my life, I answered
yes to both.”
responses were a result of weeks of unexplained pain in John’s lower back that
had left him physically and emotionally worn down. After John admitted he was
in pain, his primary care physician set about determining its cause. “We
started doing tests to try to figure out what was going on,” John says. “Initially,
we thought I’d herniated a disk in my back again because I’d done that before.”
Test results showed the problem wasn’t in his back, and the true source of the pain remained a mystery. After weeks of being unable to pinpoint a cause or a solution, John began doing his own research. “One night, I read that the pain pattern I was experiencing is common with pancreatitis and pancreatic cancer,” he says. “So I talked to my doctor about it.”
John’s doctor was skeptical. “We’ve been friends for 30 years, so that
possibility was hard for him to accept at first,” John says. When John’s
pain became so severe, however, that it forced him to go to his local emergency
department, it was that longtime friend and primary care physician who urged his
other care providers to focus on John’s pancreas. “By him insisting they
do that, they found the tumor,” John says.
A proactive attitude
This wasn’t the first time John had been given sobering news about his pancreas. Diagnosed with Type 1 diabetes 20 years ago, his pancreas hadn’t worked properly for several decades. When he received the diabetes diagnosis, John took action by researching and implementing dietary and exercise changes in an effort to decrease the disease’s impact on himself, his family and all those he served as minister of Light the Way Church in Cottage Grove, Minnesota.
As he listened to a radiologist confirm a diagnosis of adenocarcinoma, the most common form of pancreatic cancer, John once again decided he was going to become his own best advocate for what lie ahead. “I started chemotherapy immediately after my diagnosis,” he says. “I didn’t have a lot of confidence in the surgeon I was working with. My cancer was stage 3. The tumor had basically wrapped itself around an artery, so he said surgery was too risky. His medical assistant actually told my wife I’d be dead in 18 months based on what they saw.”
“My mindset upon coming to Mayo Clinic was, ‘I’m here because I want to live.’ As soon as I met Dr. Truty, I realized he shared that mindset.”
John refused to accept that prognosis. “My wife had a friend who’d been treated by Dr. Mark Truty at Mayo Clinic, so she sent an email to (Dr. Truty),” John says. “I kid you not, 20 minutes later, Dr. Truty emailed us back and asked if we had any flexibility to come to Rochester later that week. He said he’d like to meet me and talk to me about my treatment. That’s how it all began.”
John, that brief email exchange with Dr. Truty was a seed of renewed hope. “Every
cancer story is immediately a horror story. As soon as people started finding
out my diagnosis, I felt like a ghost. I could see it in their eyes,” he
says. “But I have a wife, a family — children and grandchildren — and a
congregation I love, so I said: ‘Look, I’m in this to live. If there’s any way
at all to extend my life, to improve my quality of life, I’m in.’ My mindset
upon coming to Mayo Clinic was, ‘I’m here because I want to live.’ As soon as I
met Dr. Truty, I realized he shared that mindset.”
John says one of the most remarkable and memorable points in his treatment at Mayo Clinic came when Dr. Truty shared that mindset with John’s oldest son, who’d accompanied him to Mayo Clinic in Rochester. “One of the first things Dr. Truty did was to take my son aside and share his own family’s story of pancreatic cancer,” John says. “In that observation room, with tears in both of their eyes, Dr. Truty told my son, ‘This is why I do this, and I will do everything I can to help your father win this fight.’ That was the beginning of a very meaningful doctor-patient relationship.”
A willingness to tackle the challenge
Already into his first round of chemotherapy upon arriving at Mayo, John says the first question Dr. Truty asked him was if he was ready for more. “I said, ‘Yes I am,'” John says. “My care team described (chemotherapy) as weed killer and said there’d be no surgery until I went through more chemo and radiation to try and shrink the tumor as much as possible.”
After eight rounds of chemotherapy, 25 rounds of radiation and another 25 rounds of oral chemo, Dr. Truty reassessed John’s condition. “He made it clear my ability to have surgery was predicated on what they saw on my presurgery PET scan — whether my treatments had done what they were designed to do,” John says. “After my scan, he looked at the results and said, ‘Are you ready to go into surgery?'”
was, and early the next morning, he did. While Dr. Truty understands why other
surgeons had advised against surgery due to the location of John’s tumor, he
says it was something he and his surgical team were prepared for.
“We just have a different perspective on things here at Mayo Clinic, and we’re willing to take on the more challenging cases that don’t necessarily fit into nice, normal boxes.”
Mark Truty, M.D.
tumor was close to some arteries that are pretty critical,” Dr. Truty
says. “There are some criteria out there where people say, ‘If they involve
blood vessels, then we can’t remove the tumors because we’d be leaving cancer
behind.’ We approach things a lot differently than other medical centers by
saying: ‘Why? If we need to, why can’t we take out that blood vessel and
exactly what Dr. Truty and his team did for John. “All it meant was that
the operation was of greater magnitude and carried some increased risks,”
Dr. Truty says. “Because of that, we have to make sure patients like John
are being treated adequately before surgery to justify those risks. We just
have a different perspective on things here at Mayo Clinic, and we’re willing
to take on the more challenging cases that don’t necessarily fit into nice,
Truty and his team also are willing to push the boundaries of treatment beyond
the typical standard of care for a situation like John’s. “If we approach
everything as ‘This is the standard of care,’ well, then guess what you’re
going to get? You’re going to get a standard outcome,” Dr. Truty says. “The
problem with pancreatic cancer is that the standard outcome is pretty poor. We’re
trying to do something that’s beyond the standard of care for these patients at
A life renewed
John, going beyond the standard of care was the difference between a grim
diagnosis and a bright future. “After I woke up from the procedure, Dr.
Truty came in and said I was cured,” John says. “Not in remission —
cured. He said they were able to get all of the cancer out of me, which was
defying expectations was how quickly John returned to his normal, active
lifestyle. “I’m a minster, so I speak for a living,” he says. “It’s
not like I’m lifting heavy equipment or doing physical labor, so I spent 10
days at Mayo after my surgery and then got back to work.”
weeks later, John also was able to get back to swimming and lifting weights. Today,
three years after Dr. Truty removed his tumor, John says he’s officially back
to full strength and full health.
a little weird because I’d been dealing with the mortality of this every day
while going through treatment,” he says. “There’s a weird
reconciliation that happens within yourself when you’re diagnosed with cancer.
You’re always looking at life and death. Cancer is always a part of you now,
whether you’re cured or not. But at the same time, I also have this wonderful
new community of people around me now.”
“Regardless of what you’ve been told, make that trip (to Mayo Clinic), and at least allow someone there to give you their take on what’s happening with your health. You owe that to yourself.”
a community that John is trying to grow even more through the pancreatic cancer
awareness work he’s done since his diagnosis. “I’ve done some work with
the Pancreatic Cancer Action
Network, and I’ve advocated in Washington, D.C. for more
funding for pancreatic cancer research,” he says. “My wife and I have
also hosted the remembrance service that the Pancreatic Cancer Action Network
what he’d like people to most take away from his personal story of pancreatic
cancer, John says that it’s to always get a second opinion. “No matter
what you’re told medically, get a second opinion at Mayo Clinic,” he says.
“Regardless of what you’ve been told, make that trip, and at least allow
someone there to give you their take on what’s happening with your health. You
owe that to yourself.”
Gyles Randall lived for years with pervasive pain that radiated down his legs. When he no longer could tolerate the discomfort, he sought medical help and was surprised to be referred to a neurosurgeon. But that referral made a world of difference.
As an agriculture researcher focused on soil
fertility, nutrient management and tillage, Gyles Randall was used to being
outdoors and active. Now retired, the former faculty member at the University
of Minnesota holds a doctorate in soil science, and for decades, Gyles’ work took
him into farm fields throughout southern Minnesota.
So when Gyles started
experiencing leg and back pain, it might have been easy to blame his years in
the field as the culprit. But that wasn’t the case. In fact, he felt better
when he was moving. “When I was
sitting at the desk in the office, the pain was worse than when I was standing
or walking or working in the fields,” Gyles says.
The pain turned out to be a result of wear and
tear on his spine that had developed gradually. Now after two spine surgeries
over the span of several years, Gyles is free to enjoy his active ways once
The problem started more than 10 years ago when pain began to radiate throughout Gyles’ waist, buttocks, legs, calves and ankles. He put up with the discomfort until he couldn’t ignore it any longer. Randall had his condition evaluated, and he was surprised to be referred to a neurosurgeon who recommended spinal fusion surgery.
Several days after his retirement, Randall
underwent a procedure to fuse two vertebrae in the middle of the lumbar portion
of his spine. Located in the lower section of the spine, the lumbar region helps
support the weight of the torso.
Gyles’ surgery was a success — for a while. “I
was pain-free for five years,” he says. “Then in 2016, I started
noticing some pain again that got worse and worse through time.”
“You live with it, and pretty soon it gets to the point where life isn’t quite as enjoyable when you’re in pain.”
As with his previous bout of pain, Gyles let it
go longer than he should have. “You live with it, and pretty soon it gets
to the point where life isn’t quite as enjoyable when you’re in pain,” he
says. “Your body has a way of adjusting for it; you
bend or lean over. If you’re
walking in a setting where other people know you, and you’re starting to hunch
over, they ask: ‘Aren’t you doing well? Aren’t you feeling well?'”
Gyles wasn’t doing well. In addition to the pain radiating downward, it also began affecting the upper portion of his spine. Although the problem originated in his lumbar region, Gyles was feeling the effect from his ankles all the way up to his neck. He received cortisone shots to ease the discomfort, but their effectiveness began to wane over time.
“Soon after the surgery, I was standing up straight, my posture was excellent, and I was feeling like a new person.”
In December 2018, Dr. Murphy performed Gyles’ second surgery. It involved lumbar decompression and fusion of four lumbar discs. After the surgery, Gyles had physical therapy in his hometown at Mayo Clinic Health System in Waseca, Minnesota. Since then, the improvement has been significant.
“I was very pleased,” Gyles says. “Soon
after the surgery, I was standing up straight, my posture was excellent, and I
was feeling like a new person.”
Several months after the procedure, Gyles still
had some stiffness in his back. But the debilitating pain was gone, and he had returned
to a much more active lifestyle.
“It’s not quite as easy to tie my shoes,
but I’m walking rather fast and gaining strength, too,” he says. “I’d
like to give Dr. Murphy and her team all the credit, as their surgical skills
converted me from a hunched-over person full of pain to a very healthy feeling
person without pain like I remember when I was in my 50s.”
When Jose Ramirez learned his kidneys were failing and he needed a transplant, his sister Kelsey Ramirez-Macias immediately stepped forward to be his donor. With guidance from Mayo Clinic’s Hispanic Transplant Program, the Ramirez family navigated the transplant process, and now Jose’s health has been restored.
people will do anything for family, but not many can say that they were offered
a concrete opportunity to save a family member’s life. Jose Ramirez’s family
had that opportunity, and they took it.
A 27-year-old resident of Yuma, Arizona, Jose is a test engineer for the U.S. Army at the Yuma Proving Ground. Although he looked strong and healthy, two years ago, while driving to Los Angeles, Jose began experiencing heavy heart palpitations. “I had a smartwatch that could read my heart rate, and it was reading 150 beats per minute,” he says. “I pulled off to the side of the road, relaxed, and then kept driving.”
That wasn’t the end of it, though. Once Jose returned home, his mother took his blood pressure several times. The numbers were extremely high. Jose assumed it was simply high blood pressure. It wasn’t. After a trip to the emergency department, Jose was hospitalized. After several rounds of testing, he was diagnosed with immunoglobulin A nephropathy. Over time, the disease causes inflammation of the kidneys that compromises their ability to filter waste from the blood. Jose was suffering from kidney failure, and as a result, he spent three weeks in a hospital.
Support and guidance
When Jose talked to his family about the kidney failure, his younger sister, 19-year-old Kelsey Ramirez-Macias, told him she would donate a kidney to him — even before knowing whether a kidney transplant was an option.
A transplant wasn’t in his immediate future, however. Jose was on dialysis for 1½ years, three times a week, for four-hour sessions. It was during his time on dialysis that he and his family discovered the Mayo Clinic Kidney Transplant Program.
“My mom and dad were the ones more stressed out than any of us, so it was really beneficial for them to go to those courses. It really explained the process to them.”
Jose and his family also were introduced to the advantages of Mayo’s Hispanic Transplant Program, an outreach program committed to helping close the gap in transplant care and access for patients in the Hispanic population. Education is tailored for Hispanic families, where they learn about the safety of living-donor kidney transplants and seeking a transplant for end-stage kidney disease. Patients and families are encouraged to speak with Spanish-speaking transplant providers about the benefits and options of a kidney transplant.
Jose, the program was especially helpful for explaining — and assuring his
parents about —the benefits of living-donor kidney transplants. “For them,
it’s two of their kids,” Jose says. “My mom and dad were the ones
more stressed out than any of us, so it was really beneficial for them to go to
those courses. It really explained the process to them.”
Healing and gratitude
the process, Kelsey remained committed to her initial wish to become Jose’s
kidney donor. “When he qualified to be a transplant recipient, I signed
up,” she says.
she was younger than 21, Kelsey was required to talk with Mayo Clinic social
workers to make sure she was mentally and emotionally ready for her kidney
donation. After that discussion, as well as several comprehensive examinations
and tests, Kelsey got her wish. She was approved to be Jose’s donor. “He’s
my brother,” Kelsey said. “I’d do anything for him. If it were
reversed, I know he’d be first in line to get tested, as well.”
“I never felt like I had to get a thank-you from him. Knowing that he’s all good now, that’s enough.”
When it came time for Jose’s and Kelsey’s surgeries on Dec. 19, 2018, at Mayo Clinic Hospital in Arizona, Kelsey was the first to be taken to the operating room. It was Jose’s turn for surgery later that day. The transplant went smoothly, and now the two siblings are returning to their normal lives. With his health restored, Jose has been able to go back to work.
for his sister’s gift, “You can’t just say thank-you,” Jose says. “I
don’t know how to explain it. She went through a surgery that she didn’t have
to go through.”
Kelsey insists that the greatest thanks she
could receive is seeing that her brother has recovered. “I never felt like
I had to get a thank-you from him,” she says. “Knowing that he’s all
good now, that’s enough.”
this video to learn more about Jose and Kelsey’s transplant story:
As a sled dog trainer, Rick Minard has faced blizzards and subzero temperatures. But those challenges paled in comparison to facing a complicated medical situation that involved brain tumors and two cancer diagnoses. He’s been able to weather it all, though, thanks to the trust he’s placed in his team at Mayo Clinic.
When he was 3, Rick Minard was diagnosed with acute lymphocitic leukemia. His parents were told their son wouldn’t live beyond age 4. But treatment that included radiation therapy to his head and spine for five years cured Rick and allowed the now 52-year-old to have what he describes as a “fairly normal life.”
life was upended in 2010, however, when Rick was besieged by several serious
health problems — side effects from the childhood cancer treatment that had saved
began as pain in Rick’s jaw eventually led to treatment for brain tumors and
two types of cancer. And because his medical situation has proven to be
complex, requiring a variety of specialists on his care team, Mayo Clinic has
been the ideal health care facility for him.
is the perfect person for a place like Mayo where we have a multidisciplinary
approach to care. I don’t know how you would coordinate and manage all these
conditions at several different centers to understand which one takes
priority,” Dr. Price says. “Here we can all communicate with each
other and decide how often we need to see him and coordinate all those
appointments and procedures.”
strength of that kind of coordination is not lost on Rick. “The odds were
against me being here today,” Rick says. “I’m so grateful for my wife
and the great care I’ve received at Mayo Clinic.”
his bout with leukemia as a young child, Rick grew up free from any significant
medical concerns. He played sports as a teen, and later coached football and
wrestling. While teaching high school social studies in Michigan, Rick picked
up an interest in sled dogs.
got to live in the Upper Peninsula of Michigan with a dog musher and learned to
train the dogs,” Rick says. “When I was teaching, I would teach
geography by way of teaching about the Iditarod in Alaska.”
left education in 1999 to become a trainer for sled dogs participating in the Iditarod,
which is how he met his wife, Geri. Then, in 2010, Rick developed excruciating
pain in his jaw. He saw dentists and oral surgeons, but the pain persisted.
In 2012, he went to see a neurologist in Marquette, Michigan, who recommended an MRI. The imaging showed Rick had several meningiomas of different sizes in his brain. His neurologist recommended surgery.
the most common type of brain tumor, typically are not cancerous. That didn’t
ease Rick and Geri’s fears.
“They didn’t give us any information. It’s very scary when the news is presented to you that you have multiple brain tumors, and you don’t know what that really means,” Rick says. “My wife and I walked out and decided we needed a second opinion. We knew people who go to Mayo Clinic regularly and asked my primary care doctor for a referral.”
10 minutes of hearing my medical history and looking at the MRI, he pointed at
the computer screen and said: ‘There’s a tumor in your jaw. It’s probably
cancer,'” Rick says. “No one else had seen the tumor in my jaw.”
Dr. Ahlskog recommended Rick consult with Dan Price, M.D., an otolaryngologist and head and neck surgeon in Mayo Clinic’s Head and Neck Cancer Center. When Rick and Geri met with Dr. Price, the physician explained they would need to move forward quickly, but he took time to explain the situation.
“(Dr. Price) was empathetic, and we felt at ease right away knowing that there was someone who cared and was an expert in his field.”
said it was something I needed to handle as soon as possible, and answered all
our questions,” Rick says. “He was empathetic, and we felt at ease right
away knowing that there was someone who cared and was an expert in his field.”
A biopsy confirmed the tumor was cancerous, and it would need to be surgically removed. “It was a salivary gland tumor, about 1 centimeter in size, probably caused by the radiation treatments he underwent as a child,” Dr. Price says. “These types of tumors are very rare and account for a small proportion of head and neck tumors.”
Price carefully outlined what surgery to remove the tumor would involve. It was
daunting. “The tumor had grown around the nerve that goes to my jaw. Dr.
Price explained the procedure would likely require doing reconstructive surgery
on my jaw, which would be wired shut after surgery. I would need a feeding tube
and wouldn’t be able to talk for weeks,” Rick says. “It was a lot to
try and imagine.”
decided to move forward, despite the difficult recovery that lay ahead of him.
The surgery took place Sept. 20, 2012. To Rick’s relief, not only did the
procedure go more smoothly than expected, the discomfort he had been living
with for years disappeared.
the pain in my jaw was gone the minute I awoke from surgery. I could talk, and
my jaw wasn’t wired shut. Dr. Price said he was able to access and remove the
mass through my mouth, and the margins were clean,” Rick says. “If I
could have hugged him, I would have. There’s something deep inside that you
feel when the pain you’ve felt for so long is in the past.”
he recovered from the surgery, Rick and his care team turned their attention to
the brain tumors. In March 2013, Rick met with Mayo Clinic neurosurgeon W. Richard Marsh, M.D., who recommended surgery to
remove one of the tumors. “He had a meningioma in the back of the head
that was large enough that it was causing brain compression,” Dr. March
says. “We knew we could operate on it with a high degree of safety.”
his discussion with Dr. Marsh, Rick’s confidence was high. “I was in the
hands of folks we trusted,” Rick says. “Dr. Marsh was able to address
my questions and any fears I had.”
Marsh removed the large tumors from Rick’s brain on May 9, 2013. Once again,
recovery was smooth. Rick was in the ICU for 24 hours and went home two days
The following summer, as a follow-up to the surgery, Dr. Marsh recommended Rick undergo a gamma knife stereotactic radiosurgery, which uses gamma rays to deliver a precise dose of radiation to a tumor. “The tumor had originated from the wall of a blood vessel, and I was concerned that there might be residual tumor in that wall,” Dr. Marsh says. “So we decided to treat it with gamma knife to prevent any future growth.”
Clinic neurosurgeon Michael Link, M.D. performed the procedure in June
2014. After that, Rick continued to have MRIs every six months. All went well
until fall 2015 when imaging showed one of the remaining meningiomas had grown.
tumor was roughly an inch in volume, and it was close to his motor strip and in
danger of compressing a large draining vein,” Dr. Marsh says. “The
concern was that if the tumor got to be sticky, and adhered to that vein or the
brain, it would increase the risk of surgical treatment in the future. We
decided to take it out to prevent future growth and brain compression.”
had a second brain surgery in November 2015 to remove the tumor. Following that
successful procedure, Rick continued to drive to Rochester for follow-ups with
would schedule the appointments before or after the dog sled season, and Dr.
Price would ask about how the races were going,” Rick says. “He was
always happy to see me. It’s almost like seeing a good friend you haven’t seen
in a while.”
Cancer defeated again
medical journey wasn’t over, however. Several years later, in April 2018, he
had a brain MRI done in Michigan that his Mayo Clinic team then evaluated. “The
local radiologist said everything was fine, but Dr. Price’s team called and
said one of the lymph nodes in my neck was swollen,” Rick says. “Dr.
Price said he had to do a biopsy on the lymph node, so we drove out to
Rick was diagnosed with yet another condition linked to his childhood cancer treatment. This time, it was cancer in his thyroid gland and the surrounding lymph nodes. “Thyroid cancer is very common, especially in people who have exposure to radiation,” Dr. Price says.
“I don’t think there’s any course other than to have faith that these are the best people in the world for understanding and working complicated medical issues.”
Price told Rick that he would need to have his thyroid and multiple lymph nodes
removed. “To hear they were going to cut out my thyroid caused anxiety for
my wife and I,” Rick says. “But Dr. Price reassured us that everything
would be OK, and an endocrinologist would keep me on the right medications.”
Dr. Price performed Rick’s thyroidectomy on May 18, 2018. Diana Dean, M.D., a Mayo Clinic endocrinologist, then joined Rick’s care team to determine the dose of the synthetic thyroid hormone he would need to take to replace the hormones his thyroid gland had produced naturally.
this latest surgery now behind him, Rick will continue to have follow-up
appointments with Dr. Price for the next nine years. He’ll also undergo yearly
MRIs to monitor the remaining meningiomas.
he can turn to Dr. Price and the rest of his Mayo Clinic care team at any time
is a significant source of comfort for Rick. “I don’t think there’s any course
other than to have faith that these are the best people in the world for
understanding and working complicated medical issues,” he says. “The
great relationship I have with Dr. Price is very reassuring to me. I know no
matter what happens that he will take good care of me.”
show his gratitude, and as a way of saying “thank you” for saving his
life, Rick named one of the dogs he houses and trains in his kennel Doc, after
was incredibly unique and flattering,” Dr. Price says. “I’m honored
that we have this connection, and that I’m able to maintain the human part in
Diagnosed with non-Hodgkin’s lymphoma, 4-year-old Nathan Herber’s health spiraled downward when he was overcome by life-threatening treatment complications. A team of pediatric specialists at Mayo Clinic came to Nathan’s aid. And in the end, they restored the boy’s health while putting his cancer in remission.
“He is my little rainbow and
spreads smiles and cheer. He’s a fighter, and he’s so resilient,” his
mother, Becky, says of her 4-year-old son.
Nathan’s path to the Pediatric ICU began in September 2018, when a persistent, wheezy cough prompted his parents to request a same-day medical appointment for their son at Mayo Family Clinic Kasson in Kasson, Minnesota. When a doctor found an enlarged lymph node above Nathan’s collarbone, his father, Andy, a physician assistant at Mayo, requested that Nathan receive a chest X-ray. Three hours later, a doctor called the Herbers to tell them the X-ray revealed a large mass in Nathan’s chest.
“My wife and I were devastated.
We held him all night crying,” Andy says. “It was the worst night of
Nathan was admitted to the hospital, and he started chemotherapy four days later while he was still hospitalized. When Nathan was able to return home, he took oral chemotherapy, as well as short infusions of the treatment at home. He also required weekly chemotherapy infusions at Mayo Clinic for four weeks. Throughout his treatments, Nathan played Super Mario to keep from focusing on his illness and the medicines he was taking.
Nathan’s immune system became so
weakened from the chemotherapy that he developed complications and had to be
hospitalized several times in November and December 2018. When he came home for
Christmas, Nathan could barely open his presents. Then, a second phase of chemotherapy
triggered nausea, vomiting and loss of appetite that led to weight loss.
“He was continuing to lose
weight and was starting to really go down,” Andy says. “He was about
to have the last dose of chemo and could barely stand up when we took him to
the ER on Jan. 7, 2019.”
Nathan was dehydrated, and his blood count was low. He received a blood transfusion and his last chemotherapy infusion, and he was admitted to the hospital. Shortly after, he developed a respiratory syncytial virus, or RSV, infection in his lungs and respiratory tract, as well as a chronic norovirus infection.
“He looked at me and asked, ‘Will you snuggle with me?’ That was the last thing he said before going into respiratory failure.”
At one point, while lying in bed after days of a high fever, breathing difficulties, coughing and vomiting, Nathan looked at Becky and said, “Mom, nothing in my body works.” Soon after, Nathan developed RSV pneumonia and was transferred to the Pediatric ICU.
“He looked at me and asked, ‘Will
you snuggle with me?’ That was the last thing he said before going into
respiratory failure,” Becky recalls.
The situation was dire. Nathan had
to have a breathing tube placed. Despite the help of a ventilator, his body
couldn’t maintain oxygen saturation in his blood. Due to the chemotherapy, he
had no white blood cells to fight the infections. He also required the
placement of a nasogastric feeding tube, so his body could get the nutrition it
“We were trying to identify
any new treatments, even ones that were experimental, that would help Nathan,”
Dr. Huskins says. “I contacted a colleague who has done extensive research
on treatments for RSV to see if he had any suggestions. Unfortunately, he
confirmed that there were no new antiviral medications that were available for
Nathan, but suggested an investigational immunoglobulin product that might be
Dr. Huskins contacted the
pharmaceutical company developing the medication. He also requested and
received approval from Mayo Clinic’s Institutional
Review Board to use the medication for Nathan. Dr. Huskins then submitted a
single-use investigational new drug application to the Food and Drug
Administration (FDA) to allow the pharmaceutical company to ship the medication
to Mayo Clinic, so it could be administered to Nathan.
“The whole process — from the
initial inquiry to the pharmaceutical company to the FDA’s approval — was
accomplished in about six hours. Many people chipped into make the approval
process so speedy,” Dr. Huskins says. “We received the product the
Nathan’s parents carefully weighed
the potential benefits and risks. “We were at the point where Nathan had
nothing to lose,” Becky says. “But it was scary having to make that
call since he’d had a bad reaction after a blood transfusion.”
Ultimately, Becky and Andy agreed
to the treatment. “Our fear was giving him the medication could kill him,
and not giving him the medication could kill him. Nonetheless, we decided to
move forward,” Becky says. “When it arrived, I stood at the head of
his bed, which was the only place I could really access my son due to the many
lines, wires and tubes around him. I kissed his head and held onto him as they infused
the medication. The minutes seemed like hours.”
“It was a constant battle to save him. But we were able to provide that supporting strength to the family and work with the other members of the team across the different specialties to give Nathan the best possible care.”
Vilmarie Rodriguez, M.D.
Nathan also received a medicine to
jump-start production of his bone marrow in hopes that his body would recognize
and target the infection. The team told the Herbers that when Nathan’s immune
system reactivated, there was a good chance he would get sicker before he got
better. And that’s what happened.
Despite being on a maximum ventilator support, Nathan’s lungs continued to fail, and he required extracorporeal membrane oxygenation, or ECMO. With ECMO, a device takes over the work of the lungs, or the lungs and heart. When blood is removed from the body, it passes through a special membrane in the ECMO machine that removes carbon dioxide and adds oxygen to the blood. Then the newly oxygenated blood is returned to the body.
Devon Aganga, M.D., a pediatric critical care specialist, made the decision to place Nathan on lung bypass ECMO. Andy and Becky say Jessica Mc Nallan, a pediatric ICU nurse, was instrumental that night. “Jessica had preemptively placed orders in preparation for Nathan potentially needing ECMO, which streamlined the process when minutes mattered,” Becky says. “Her forward thinking and planning helped to save him.”
Nathan’s parents credit his care
team’s expertise for getting him through that frightening time. “We were sobbing. We definitely thought that was
the end,” Andy says. “There’s no doubt in my mind their wealth of
knowledge and experience in an otherwise dire situation got Nathan safely to
the OR and hooked up to ECMO seamlessly. Those guys were
amazing. Jessica and Dr. Aganga would not leave his side until he was
safely transported and stable.”
“It was a constant battle to
save him,” Dr. Rodriguez says. “But we were able to provide that
supporting strength to the family and work with the other members of the team
across the different specialties to give Nathan the best possible care.”
Glimmers of hope
Nathan’s lungs needed time to heal
from the severe damage caused by RSV pneumonia and acute respiratory distress.
He remained on lung bypass ECMO throughout February, primarily under the care
of anesthesiologists Stephen
Gleich, M.D. and Gregory
Knowing how much Nathan loved Super
Mario, the ECMO nurses decorated his room with Mario Brothers characters that
were drawn and colored by hand. “Everybody was on Team Nathan. Any one of
the dozens of people that touched his case was doing everything in his or her
power to make sure he made it to the other side,” Becky says.
For her part, Becky maintained a
vigil at Nathan’s bedside throughout his hospital stay. “I needed him to
know that his mom was there,” she says. “I needed to instill him with
hope and strength to keep fighting.”
To provide some sense of normalcy while he was unconscious, Becky read books to Nathan, sang to him and played music. She received help from specialists in the Mayo Clinic Children’s Center Child Life Program. Music therapists from the program would come into Nathan’s room and play his favorite songs.
“When they played the guitar
while he was unconscious, we could see his heart rate and blood pressure go
down,” Becky says. “To see little tiny moments and glimmers of hope
that some of the things we were doing were helping was so reassuring.”
In mid-February, Nathan got a tracheostomy, a surgically created hole through the front of the neck and into the windpipe, or trachea, that provides an air passage to help with breathing. Although he remained somewhat stable while continuing on lung bypass ECMO, CT scans revealed that he still had air leaks in his lungs that were only being prolonged by the pressure created by the ventilator to keep his lungs open and functioning.
During a care conference with the team of doctors overseeing his
treatment, the Herbers learned there was a possibility that the air leaks would
never heal, and it was possible they could take Nathan’s life.
Road to recovery
As weeks went by, however, Nathan’s
condition began to change. His care team was able to lower his sedation and
ventilator settings. His lungs started to improve. On Feb. 28, he was removed
from ECMO. “He was sitting up playing video games,” Andy says. “It
Nathan continued to improve. In
April, after 86 days in the hospital, he was discharged. And although he had
battled through a host of severe medical concerns during his stay, cancer
wasn’t one of them. His non-Hodgkin’s lymphoma remained in remission throughout
“I have been working at Mayo
for 19 years, and Nathan is one of the many miracles I have seen,” Dr.
Rodriguez says. “Our patients’ successes are the result of Mayo’s unique
collaboration among all medical disciplines and the trust our families place in
their care team.”
Today, Nathan is in the maintenance
phase of chemotherapy, which will continue for two years, and his cancer
remains in remission. He now weighs nearly 50 pounds — seven more than when he was
diagnosed — and his health is improving daily. He’s enjoying plenty of activity
again, including jumping, running and playing on the
backyard waterslide with his brothers.
“I think one of the things we can appreciate more than the average person is the comprehensive care Mayo provides and how physicians collaborate on a case.”
Andy know that the teamwork-based nature of care Nathan received at Mayo Clinic
played a large role in his outcome. “I think one of the things we
can appreciate more than the average person is the comprehensive care Mayo
provides and how physicians collaborate on a case,” Becky says. “And
continuity of care is also crucial, especially for patients in critical care. I
think Nathan achieved this outcome in part because we were there around the
clock advocating for him.”
Dr. Rodriguez agrees that
collaboration between family and caregivers was key. “Nathan’s parents
were always holding onto hope, and that’s what we try to give our families,”
Dr. Rodriguez says. “They see us as a pillar of strength and support to
keep them going on that difficult journey.”