Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Posts (3)

Oct 27, 2015 · Be the Match: It Could Save a Life, Like Christina's

Bone marrow transplant patient Christina Woodside

Christina Woodside starts off the YouTube video that chronicles her health journey by saying, “My family is like every other average family in America.” Her story, however is anything but average.

As part of an active family, Christina, along with her husband and their five children, enjoyed running, biking, fishing and snow sports.

In 2013, on the day after Thanksgiving, that active lifestyle was interrupted by what Christina initially thought was strep throat. She went to urgent care at a clinic in her hometown of Mankato, Minnesota. A strep test came back negative. But her white blood cell count was extremely high, and that pointed to a more serious problem.

Christina was sent to Mayo Clinic’s Rochester campus, where she was diagnosed with leukemia. To say this came as a shock would be an understatement.

“I threw up right after they told me,” she says, describing the agony of learning her diagnosis.

Finding a match

She was admitted to the hospital, and shortly thereafter, Christina learned she would need a bone marrow transplant. She was told that she would have weeks to live if she chose not to have the transplant.

“It was a no-brainer,” Christina says of her decision to go ahead with the transplant.

At first, it seemed like it would not be difficult to find a donor. However, Christina had to have chemotherapy before she could receive a bone marrow transplant. “They can’t do a transplant if you have full-blown cancer,” she says. So, she had to wait until her body was ready for the transplant. And as time passed, finding a suitable donor became more complicated.

“By the time it came down to it, there were three donors,” she says. “Then, it was down to just one donor. People’s situations change; sometimes, they change their minds.”

After a long wait, Christina found a donor and had the transplant on June 4, 2014, which she calls her new birthday.

“I am so thankful for my donor and for the Be the Match organization,” she says. Be the Match, operated by the National Marrow Donor Program, is the largest marrow registry in the world and helps patients find life-saving marrow donors and provides support throughout the transplant process.

Bumps in the road to recovery

While the bone marrow transplant gave Christina a second chance, she’s had some big bumps in the road to recovery. She had a relapse in January 2015. Her treatment options were limited, because of all her previous chemotherapy treatments. She opted for an experimental drug, which she reacted badly to, causing a seizure and leaving her in a coma for seven days.

When she came out of the coma, Christina had to go to physical therapy to learn to stand and walk again. Working with a speech therapist, she regained functional knowledge of language.

Today, Woodside says she is going to physical therapy sessions twice a week and making great strides. When she first walked into the physical therapy clinic, she was using a walker. Now, she can leg press 125 pounds. She has regained her ability to drive. And, she bought a recumbent bicycle and did a 12-mile River Ramble ride with her daughter.

And she’s retained her optimism.

“Through all of this, I learned a lot,” Christina says. “I am thankful for the medical staff and the support I received from family, friends and even people I’ve never met. I learned that people are good, and miracles do happen. Most importantly, I am thankful to be alive.”

Her doctor, Shahrukh Hashmi, M.D., Hematology, echoes that thought. “Without a stem cell transplant, Christina would not be here with us,” Dr. Hashmi says. “It is of utmost importance to become a registered donor on Be the Match for bone marrow or stem cell donation, since simple measures can save someone’s life, and the cycle of goodness continues.”

To find the donor drive near you, visit the Be the Match website.


HELPFUL LINKS:

 

Oct 22, 2015 · Rallying Around 'Jack' – Buying Time for 11-Year-Old Who Touched the Hearts of His Care Team

Jack and his family with Jack's care teamHe melts hearts with his infectious smile, cheerful attitude and frequent magic tricks.

But the slogan on Haonan Jiang’s T-shirt, which reads “Tough as Nails,” is a more accurate summation of his spirit, and the fight he and his family have been waging.

The 11-year-old from Beijing, China, prefers to be called “Jack.” He is suffering from what is known as an anaplastic astrocytoma, a grade 3 malignant tumor, according to his doctors at Mayo Clinic. The typical survival rate after diagnosis is one to three years.

Jack’s parents, Ben and Lili Jiang, had promised him a trip to see America when he finished primary school. But instead of sightseeing, their focus is now on Jack and doing anything possible to stop, or at least slow, his deteriorating and deadly condition.

Very little pain, and a sign of things to come

The first hint of trouble came last February. After a shower, Jack told his father that his right leg felt the heat from the shower differently from the left one. If Jack turned the water very hot, he didn’t feel any pain in his right leg. He also noted that if he squeezed his leg, there was very little sensation.

By March, Jack’s left leg began to lose strength. Then he lost the ability to feel both legs. He had to work hard to walk, had a halting gait, and used his hands to lift his legs to climb stairs. “A thought flashed in my mind, something is not okay with my son,” says Ben.

Shortly thereafter, Jack was admitted to a Beijing children’s hospital. He received three MRI scans over the span of a week, but the doctors told them there wasn’t much they could do. “It really hurt our hearts, but we didn’t give up,” says Ben. With the help of friends, he had Jack seen at five other top hospitals in Beijing.

Based on the MRI scans, doctors said they believed that Jack needed surgery for a cancerous tumor on his spine. He was still able to walk on his own, so doctors advised against what would be a risky procedure.

“It was very heartbreaking, and as a parent I could not accept that,” says Ben. “My son played all sports, excelled in school, I needed to do everything I could to give my son another chance.”

Friends in America willing to help

Jack’s parents asked their doctor about options abroad, but he wasn’t hopeful. They weren’t sure what to do next. Then Ben read a story on the Internet about a man with an illness similar to Jack’s who traveled from China to America for a successful treatment. When Ben learned that the man had been misdiagnosed, it gave him hope.

Jack with his familyBen recalls begging a Beijing hospital’s administrators to release Jack’s MRI records in a format required by U.S. hospitals.

The family had no friends to help them in the U.S. But they had recently vacationed on Mauritius, a small island off the Coast of Africa in the Indian Ocean, where they met a Chinese woman from America, and Lili had saved her phone number. They called and asked the woman about possible friends in the Boston area. She couldn’t help there, but she mentioned that she lives in Rochester, Minnesota, close to Mayo Clinic.

“I didn’t know anyone in America, yet I met someone who lived near Mayo Clinic. It’s like God arranged everything,” says Ben. “I told my wife this is a sign of what we’re going to do.”

Thanks to Ben’s travel promise to Jack, the process of securing a travel visa was already underway. They bought tickets for a flight to the U.S. the day after their travel visa arrived.

After arriving in Rochester in May, the family went to church with their friend. There they met new friends who listened to the family’s story and made sure that Jack’s case came to the attention of Mayo Clinic doctors.

He was admitted to Mayo Clinic Children’s Center, and after a biopsy of his spinal cord tumor was performed in late May, he was given the diagnosis of anaplastic astrocytoma.

Jack’s case is unusual in at least a few respects according to Nadia Laack, M.D., a pediatric radiation oncologist at Mayo Clinic. “They are rare tumors to begin with,” says Dr. Laack. And when they are found, she says, “95 percent of them are found in the brain.”

The location of the tumor left the medical team with few options.

Jack’s family and his doctors were not ready to give up, however. Ben recalls his social worker asking them why they had come to America. “Hope,” he answered. “If there is one country that can heal my son, it’s America.”

Rallying around the patient and family

Jack’s doctors thought he might benefit from radiation therapy. They wanted to slow down the rate of neurologic deterioration due to the progression of the tumor and improve the quality of his life.

By the time he was admitted to the Inpatient Rehabilitation Unit on the Saint Marys campus, Jack had lost the ability to use the lower half of his body. His father was carrying him to and from bed, so he could go to the bathroom, bathe and eat.

While Jack was receiving therapy on the rehabilitation unit, nurses gathered donated supplies for Jack’s family, and his physical therapist was able to get him a wheelchair. With no insurance, no funds other than personal savings, and the family’s decision to put their home up for sale, Jack’s team ensured he got the care he needed.

“The needs of the patient come first,” says Julia Iafrate, D.O., a resident in Physical Medicine and Rehabilitation. “So we made it happen. A number of providers acted together to make Jack’s needs come first.”

“The way the team brought their expertise and compassion to advocate for Jack just made me proud and grateful to work at Mayo,” says Sherilyn Driscoll, M.D., pediatric medical director, Mayo Clinic Physical Medicine and Rehabilitation. “His team helped make the difference between a sick boy lying in bed and an independent boy joyfully participating in life around him.”

Jack was able to join his family at the Ronald McDonald House in mid-June.

Progress, precious time and a superhero

Doctors designed a four-week course of radiation therapy specifically for Jack, so he could be well enough to return home to China by in August.

“We had very limited options. The goal is really to have tumor control, not a cure. That’s the nature of the disease,” says Mayo Clinic Pediatric Oncologist Amulya NageswaraRao, M.B.B.S.

“We’re buying time, only months really,” adds Dr. Iafrate. “But for an 11-year old child, that has all the meaning in the world for his family. That’s why we rallied so hard – to get him a few good months before he further declines.”

Ben was touched by the extraordinary effort. “From the doctors to the nurses, everyone treats my son and my family as a human being,” he says. “It makes me cry. It makes me cry a lot.”

When Jack first arrived in Rochester, he told his therapists his goal was to be able to walk to school again. He still needs his wheelchair, but since starting radiation treatments that are shrinking his tumor, some movement is returning to his right side, and he can move his leg.

Steroids have helped his appetite to return and he is slowly gaining weight. Jack says he loves his mother’s cooking. And French fries.

Along with video games, Jack is a big fan of Hollywood action movies and wants to be an actor. Hugh Jackman and Chris Evans are on his shortlist to meet. Thanks to the generosity of a Mayo Clinic patient, Jack got his wish.

Jack and his family were to fly to Berlin on their way home to China in mid-August. During a stop there, they visited a film production set and met actor Chris Evans, who plays Captain America. The crew was finishing up the final scenes for the next Marvel Comics movie.

“Awesome,” is how Jack summed up the news when he learned that he would meet one of his heroes.

It’s clear Jack and his family are heroes to his care team who are impressed by their “do everything, do anything” attitude to overcome financial, distance and language barriers.

“When someone feels they trust you, and you are their best hope, it’s hard not to be moved by that,” says Dr. Laack. Dr. Iafrate adds, “I don’t have children yet, but if and when I do, I want a ‘Jack.’ This child will be in my thoughts forever.”

Dr. Iafrate recently chatted with Ben, and told him, “Your family has touched the hearts of many people here. We love Jack. Thank you for being part of our lives.”

The feeling is mutual.

“No one would understand how lucky I feel for my son,” says Ben. “The doctors at Mayo Clinic are really angels whom God sent down to earth. Everyone helps the patients, thinking of many things that we didn’t think of as parents, and they are very happy to do so. That’s really amazing! I wish every doctor could be like Mayo’s one day in China.”


HELPFUL LINKS

Oct 5, 2015 · Lifetime of Seeking an Answer Finally Rewarded With a Diagnosis

Stacy Carlson with familyStacy Carlson was born with congenital myasthenic syndrome, and although she received a number of opinions throughout her life, it wasn’t until age 44 that she received a definitive diagnosis. It was after her local physician referred her to Andrew Engel, M.D., a neurologist at Mayo Clinic, that DNA testing confirmed a particular gene fault responsible for Stacy’s ills.

Stacy would learn that she had congenital myasthenic syndrome, an inherited neuromuscular disorder caused by defects of several types at the neuromuscular junction. It was a long road getting to that diagnosis. 

Stacy recalls stories of being rushed to the emergency room as a one-month-old baby, as she was choking on baby formula. Physicians at that time attributed the problem to narrowing of her larynx. They performed a tracheotomy and placed a feeding tube, which was removed a month later. The choking issues continued, however.

During her toddler and preschool days, Stacy says she did well, reaching developmental milestones. However, in second grade, during her school’s Field Day, a teacher noticed that Stacy was having difficulty keeping pace with the other children. She recommended Stacy be taken in for a checkup, where she says her doctor diagnosed her with ocular cranial somatic muscular dystrophy. But soon after, she was observed by a panel of physicians and diagnosed with congenital myopathy and scoliosis.

Stacy says that although she wore a back brace for three years and had two spinal fusion surgeries for scoliosis — one at 11 and one at 15 years of age — she continued to have a fairly normal childhood, with the help of physical therapy. During high school, Stacy also suffered from muscle weakness and unusual allergy-like attacks. She had to use a walker when traveling long distances, she says.

Still, Stacy finished high school, graduated from college, and became an accountant. But her symptoms continued to worsen.

By age 28, Stacy was becoming deeply concerned about the state of her health and decided to seek further medical help. “I was having trouble getting out of bed and into my car, so that I could drive to work,” she says. “It took forever to walk down a hallway.”

“I was having trouble getting out of bed and into my car, so that I could drive to work. It took forever to walk down a hallway.” – Stacy Carlson

Around this time, Stacy says she saw an article in the Muscular Dystrophy Association’s Quest magazine and read the story of a man whose symptoms had been misdiagnosed since childhood. He turned out to have had facioscapulohumeral muscular dystrophy, one of the most prevalent forms of muscular dystrophy. His symptoms were similar to what Stacy was experiencing. She recalled that the albuterol she was given in her visits to the Emergency Room to treat her allergy attacks seemed to make her stronger. So she asked her doctors to consider whether she had the condition.

During this same time period, she says, “I saw a commercial on television that made me cry. There was a child in it. I wanted a baby but was feeling hopeless about my own strength and the challenges I was having with just moving,” she says. “Then I felt like God was speaking to me telling me not to give up.”

The doctors prescribed albuterol to address her symptoms while waiting for the results on the facioscapulohumeral muscular dystrophy tests, and she says it produced a dramatic improvement. The tests came back negative, and she was diagnosed with mitochondrial myopathy, but she says doctors were baffled as to why albuterol increased her strength.

She had been struggling with things like getting up from a seated position. “But within five days of the new medication, I regained 5 years of my strength,” says Stacy.

Stacy kept a journal during this time titled, “My Miracle Journal,” and with her health improving, she began to refocus her attention on her dream of marriage and a family. In time, she would meet someone special, and they became engaged and sought genetic counseling.

“We wanted to know if our child would inherit this disease,” she says. “They couldn’t give us a definitive answer, but my husband and I are Christians, and so we went on faith.”

At age 38, Stacy became pregnant. She says she became considerably weaker during pregnancy and began having difficulty swallowing food. She came to need her ventilator, previously used for sleep apnea, full time to help her breathe. Close monitoring in hospital was required for three weeks before delivery.

In 2007, her daughter, Sarah, was born.

Stacy’s strength returned post-delivery. She continued to want an answer to the question regarding her daughter possibly inheriting her condition. So, at the age of 41, she went to a Muscular Dystrophy Association clinic, where she was referred to Brigham & Women’s Hospital. She was also doing her own research and asked her physician whether her condition could be myasthenia gravis, because of her droopy eyelid. The physician told her she did not have myasthenia gravis, an autoimmune disease, but also told her about a specialist at Mayo Clinic.

“Dr. Engel had pinpointed my neuromuscular disease of congenital myasthenic syndrome,” Stacy says … She cried tears of joy on hearing that her daughter would not develop the disease. 

“I will go to Minnesota. I have a little girl. I’m very concerned about her future. She started dancing at two-and-a-half years old,” Stacy told the doctor.

Stacy wanted the answers for her daughter and needed to know if Sarah had inherited the condition that had taken so much of her own strength. “Friends helped me pay for it, and I borrowed from my retirement account. I just needed to know,” she says.

At Mayo Clinic, after a clinical trial and DNA testing, Stacy was given the answer she had waited so long to hear.

“Dr. Engel had pinpointed my neuromuscular disease of congenital myasthenic syndrome, AGRN gene fault,” Stacy says. “There was no doubt about it.” And she cried tears of joy on hearing that her daughter would not develop the disease.

“I called my mother and my husband,” she says. “I put the news on Facebook. I wanted the whole world to know. I finally had a diagnosis after 36 years.”

Today, Stacy is much stronger with a new medication. It’s helped her regain the life she’d longed for and try to keep pace with her active daughter. “As a homeschooling mom, I am on duty 24/7,” she says. “My daughter is in swimming and ballet. We are on the go a lot.”

She also has connected with a community of support through the Congenital Myasthenia Syndrome group on Facebook. “Dr. Engel’s name is shared regularly with new folks to the group,” she says. Members recently sent a “thank-you book” to Dr. Engel with photos and stories of all the people he has helped.

Stacy says she is thankful for the answers, hope and reassurance that Dr. Engel provided in the diagnosis. “I’m just in awe of him,” she says. I’m thankful for people like him that really seek to find the answers.”


HELPFUL LINKS

 

Contact Us · Privacy Policy