"We debated on a number of facilities after Aaron's diagnosis, but we ended up coming to Mayo, because they offered an ECMO (heart and lung machine) as part of his treatment if he were to need it," Kathy says. "The other medical facilities did not." 

Doctors told Kathy and Ryan that Aaron would likely have no more than a 50 percent chance of survival after his birth. They were determined to put those odds in his favor. After his birth, Aaron spent 73 days in Mayo Clinic's Neonatal Intensive Care Unit at Mayo Clinic Children's Center. He underwent two surgeries — the first when he was just three days old.

"They basically built a new diaphragm for him, because he was born without part of his own," Kathy says. "They made it out of layers of his transverse abdominal muscle, which was different from what other facilities did."

Surgeries weren't the only thing Aaron had to overcome. There were also infections, and bouts of meningitis and pulmonary hypertension. Through it all, however, his parents and his care team never wavered or left his side.

"Aaron had his ups and downs," Ryan says. "It was a roller-coaster of a ride at times, but his doctors, nurses, and everyone else in the NICU were phenomenal. He had a lot of people caring for him."

And they were there at the end of those 73 days when Ryan and Kathy were finally able to take Aaron home.

A second child soon followed — another son — and for a while, it looked like Ryan and Kathy could relax and enjoy the happy family life they'd always wanted.

Another bump in the road

Three months later, however, Kathy noticed a strange dot on their youngest son's skin. The couple returned to Mayo Clinic, where doctors diagnosed their second son, Grant, with Wiskott-Aldrich syndrome, a rare and potentially life-threatening immune system disorder. The condition inhibits the body's ability to produce platelets, the blood cells that help keep bleeding under control.

Grant's only hope for a cure was a bone marrow transplant. There was just one catch. Because Wiskott-Aldrich syndrome is so rare, Mayo Clinic had never performed a bone marrow transplant on a patient who had the condition.

"Bone marrow transplants for patients with Wiskott-Aldrich syndrome, by themselves, are not that unique," says Shakila Khan, M.D., a pediatric hematologist/oncologist at Mayo Clinic. "But here at Mayo, we initially were not doing immunodeficiency transplant, because we didn't have the required immunology support."

Dr. Khan told Ryan and Kathy that she and her medical team were willing to have Grant be their first transplant for Wiskott-Aldrich syndrome … if they were OK with that.

"Mayo and Dr. Khan were always very straightforward with us about that," Ryan says. "They said, 'We think we can help — we've never done this kind of transplant before — but we think we can help your son.'"

Though they'd researched and visited other facilities that had performed bone marrow transplants on patients with Wiskott-Aldrich syndrome, Ryan says the "straightforward honesty" the family received from Dr. Khan and others is what ultimately made them decide to turn to Mayo Clinic again. "Because they were so open and honest with us, we came back and said, 'No, let's do it here,'" Ryan says. "That made the decision for us."

With the decision made, Dr. Khan began guiding Ryan and Kathy through the process of getting Grant qualified for his transplant, including finding a matching donor through the National Marrow Donor Program's Be the Match registry. "They found several possible matches," Ryan says. "Ours just happened to come from Germany."

Grant's transplant went well, and was ultimately a success. However, there was a complication when his liver reacted to the to the chemotherapy drugs given to prepare him for his procedure. "His liver started shutting down, which was pretty scary," Ryan says. "But his medical team worked through it and brought in all the specialists they needed to help." And that, Ryan says, is what's "so great" about Mayo Clinic. "Anyone you could ever need is already right there," he says. "They never have to send you anywhere else. You just call and they're there. That was very comforting for us."

An exceptional team approach

Grant's entire care team at Mayo was exceptional, Ryan says. Especially the nurses "who were so good about giving us breaks" and offered to stay with Grant so he and Kathy could grab a quick bite to eat throughout the day. "Having a chance to do that and get away from everything for a bit -- little things like that made a big difference for us," Ryan says.

In the end, it also made a big difference for both of the couple's sons, too, who Ryan says are now back home and "doing great" in their ongoing recoveries.

"We could not have asked for better care, or better people. Looking back, we wouldn't change a thing." - Ryan Nielsen

"Grant's down to monthly appointments now and he's got his strength back," he says. "And Aaron, his lungs continue to grow. He'll continue to see his doctors at Mayo Clinic on a yearly basis, but he's also doing very well. His lungs are growing and getting stronger."

Both are outcomes that, looking back, Ryan and Kathy say they couldn't be more pleased with.

"The main reason we chose to go back to Mayo Clinic with Grant was because of the experience we had there with Aaron," Ryan says. "We really like and appreciate Mayo's team-approach to care. No one's opinions are left out. They all talk as a team -- the nurses, the doctors, the specialists -- and they don't leave any stone unturned. We could not have asked for better care, or better people. Looking back, we wouldn't change a thing."

HELPFUL LINKS

• Learn more about Mayo Clinic Children's Center.
• Explore Mayo Clinic's transplant programs.
• Request an appointment.

The post Many Hands Make Hopeful Work for Nielsen Boys appeared first on Mayo Clinic News Network.

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:

• Learn  more about bone marrow transplant.
• Sign up at Be the Match registry.
• Request an appointment.

The post Be the Match: It Could Save a Life, Like Christina’s appeared first on Mayo Clinic News Network.

Christina Woodside was knocked down — hard, but thanks to a Be The Match donor, she’s back up — and running.

“My family is like every other average family in America,” Christina says at the start of a self-published YouTube video that chronicles her health journey.

As part of an active family, Christina, her husband and their five children enjoyed running, biking, fishing and snow sports. But all that changed the day after Thanksgiving in 2013.

The diagnosis

Christina thought she’d come down with strep throat and went to a clinic in her hometown of Mankato, Minn. The test came back negative for strep, but an extremely high white cell count indicated a more serious problem. Tests at Mayo Clinic in Rochester would soon reveal Christina had leukemia. “I threw up right after they told me,” she says, describing the agony hearing the diagnosis.

Shortly after being admitted to the hospital, Christina learned, without a stem cell transplant, she wouldn’t live beyond a few weeks.

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

The donor

At first, it seemed like it would not be difficult to find a donor. However, during her hospital stay, Christina’s leukemia returned several times, and she had to have chemotherapy.

“They can’t do a transplant if you have full-blown cancer,” she explained. “By the time it came down to it, there were three donors, then it was down to just one donor.”

After a long wait, Christina had the transplant on June 4, 2014 — the day she calls her “new birthday.”

“I am so thankful for my donor and for the Be The Match organization,” she 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."

The organization

Be The Match, operated by the National Marrow Donor Program (NMDP), is a nonprofit organization that’s dedicated to helping every patient get the lifesaving transplant they need.

“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,” says Mayo Clinic hematologist Dr. Shahrukh Hashmi. “Without a stem cell transplant, Christina would not be here with us.”

The recovery

Things didn’t improve right away for Christina. When she relapsed in January 2015, options were limited due to previous chemotherapy treatments. Christina took an experimental drug that caused a seizure and sent her into a coma for seven days.

When she came out of the coma, Christina’s battle got even tougher. She had to relearn to stand, walk and talk. The work was difficult, but thanks to the support of her family, Christina made it through the journey.

"Most importantly, I am thankful to be alive,” Christina says.

Today, Christina is continuing her physical therapy sessions and is returning to her family’s active lifestyle. She bought a recumbent bicycle and recently did the 12-mile River Ramble ride with her daughter. Earlier this month, Christina marked another milestone by completing the Mankato Marathon 5K run.

Be The Match drives are being held in Rochester, Minn. in October.

Oct. 26, Francis Employee Cafeteria, Rooms H/J, 10 a.m. – 4 p.m.

Oct. 29, Harwick 1-16, 10 a.m. – 2 p.m.

Oct. 29, Eisenberg Employee Cafeteria, Room 6, 7:30 a.m. – 3 p.m.

If you don't live in Rochester, check the Be The Match website to find a drive near you.

The post Be The Match Donor Gives Christina New Birthday appeared first on Mayo Clinic News Network.

Stem cell transplantation, also known as bone marrow transplantation, is a procedure that infuses healthy cells, called stem cells, into your body to replace damaged ones. These transplants have become standard treatment for a number of cancers and blood-related diseases like leukemia and lymphoma.

It’s possible for a patient’s own stem cells to be used in the procedure, but sometimes donor cells are necessary. Although a family member is the first choice, often a complete stranger can be the best match. That’s why the National Marrow Donor Program, now called Be The Match, is so important.

“The bigger the donor pool, the better your chances of finding a good match,” explained Dr. Shakila Khan, Mayo Clinic pediatric oncologist. Dr. Khan says this is especially true for patients from an ethnic minority group perspective. “If you are a Caucasian, you have an 80 percent chance of finding a donor.  But if you are an ethnic minority, your chances are lower,” she explained. “That is why Be The Match is focusing on ethnic minorities and increasing the donor pool there.”

Listen to Dr. Khan’s Mayo Clinic Radio discussion.

Dr. Khan noted a special effort is also being made to reach younger donors in general. According to Be The Match, doctors request donors in the 18- to 44-year-old age group 90 percent of the time. “Studies have shown with younger donors, the survival is better,” she said. “That’s why they are doing drives on college campuses."

Learn about joining the donor registry and find out what happens if you are a match when you tune in to Mayo Clinic Radio during the weekend of October 24-25.

The post Ethnic Minorities, College Students Play Key Role in Donor Program appeared first on Mayo Clinic News Network.