Archive for the ‘Children’ Category

Jacob Harpel’s Thanksgiving Story

November 25, 2010

Eight-year-old Jacob Harpel from Glencoe, Minn., was diagnosed with a plum-sized brain tumor the day before Thanksgiving last year. He had aggressive brain surgery at Mayo Clinic in August to remove the tumor; with the surgery he had a 50% chance of losing his peripheral vision on one side and a 50% chance of speech and comprehension deficits. Within 24 hours of the surgery, Jacob was playing the piano at Saint Marys Hospital, and just three days later he went home tumor-free.

This week, exactly a year from the initial diagnosis, Jacob had follow-up appointments at Mayo Clinic — he’s still tumor-free, his vision is 20/20 including peripheral vision, he has no speech or comprehension deficits and he’s seizure-free. It’s quite a different Thanksgiving for the whole Harpel family.

View the videos below to hear the Harpel family tell their story, including their description of playing “Just Dance” on the Wii during Jacob’s video EEG, Jacob saying that the surgery was easy, “I just slept the whole time,” and the support of their family and friends. And as for their Mayo Clinic physicians? Jacob says about Dr. Nicholas Wetjen, his pediatric neurosurgeon – “I LOVE that man!”

Helping the Girls of the Congo: Part Twelve (More from Friday)

November 18, 2010

The following is another update from the Mayo Clinic team that was in the Democratic Republic of the Congo last week, written by Dr. Deborah Rhodes .

Dr. Sean Dowdy and Dr. Emanuel Trabuco had another long day in the OR, with two large fistula repairs and a radical hysterectomy for advanced cervical cancer – what would be an easily preventable disease if Pap smear screening was available. We wrapped up our clinical and teaching work, and then Dr. Mukwege called us together for a final meeting. Earlier in the day, we had seen a magazine in his office in which he appeared on the cover. One sentence in the article stuck in our minds. It said, “Many visitors come here to eat sandwiches and cry, and then they return home.” We had brought a container each day with a sandwich for our lunch, and we had certainly shed our fair share of tears. But we were determined not to be the next in a long line of passive sympathizers. Dr. Mukwege presented us with a flag of the DRC and his words reassured us that he understood our intent and commitment to build a long-lasting relationship in support of Panzi.

Dr. Denis Mukwege, the founder, director and chief surgeon of Panzi Hospital in Bukavu. Photo source: http://tinyurl.com/25h492m

As we were walking out of the hospital, Dr. Mukwege’s secretary ran up to deliver a message to him. She had just received an e-mail on which she was apparently copied inadvertently. The e-mail, from an American organization at which Dr. Mukwege is scheduled to speak, conveyed concern that his remarks might stray into the causes of the conflict in the DRC rather than strictly the medical response. He sat down on a bench, shook his head and smiled. A four-year-old boy wandered over and lay his head down on Dr. Mukwege’s lap. I remembered this boy. On my first day at Panzi, I almost tripped getting out of the car as two little arms grabbed me around the knees. I looked down, and a boy was grinning up at me. He took my hand and led me into the morning prayer service, but then we were separated. Now, Dr. Mukwege stroked his head while we talked. He lay perfectly still for 45 minutes, his eyes closed in contentment. In my right peripheral vision, I saw a young woman staring at him, knitting and undoing the same small crocheted hat as if in a trance. At the age of 15, she had been forced to watch rebel forces kill her entire family and village. She was taken by the forces and held as a slave, during which time she was impregnated by her captors. This boy was the result of that pregnancy. She would stand close enough to watch her son, but could not bring herself to get close enough to mother him. They now both lived at Panzi Hospital. A few days earlier, I had seen him jump into Christine’s car at the end of a long day. She told him she needed to leave, but he refused to let go of the steering wheel. “Take me home, Mama Christine,” he pleaded. As she pulled out some candy to coax him out of the car, there were tears in her eyes, even though I’m sure she has witnessed this routine innumerable times. How could you watch these things day after day, year after year, and not have an opinion on the genesis of the problem or the outline of a solution? Dr. Mukwege had always intended to follow in his father’s footsteps and become a pastor. But he realized that he could not care for peoples’ spiritual needs if their physical needs were so great. And so he turned to medicine. Yet it is clear that no amount of medical care – nor the food and safe haven that he provides – can solve this. The solution, ultimately, will require an open discussion of the root causes of this conflict without fear of reprisals.

On Friday night, we drove to Christine’s mother’s house, overlooking beautiful Lake Kivu. The house where Christine was born had been destroyed in an earthquake several years earlier, but a new house had been built just above it. We were joined by Eve, Christine, and Elaine Doughty (the trauma therapist from San Francisco who is training the staff at City of Joy). Christine’s mother treated us to an incredible Congolese dinner, complete with tilapia, feuilles de manioc (cassava leaves), and red beans. Dr. Mukwege arrived and gave the most eloquent tribute to Eve and Christine. Christine stood up and said that her faith was starting to come back. She was referring to a story she had told us the night we arrived. She had been handed a six month-old baby who had been raped. She cradled the baby and drove quickly to Panzi hospital, but the baby had already died. She cried out to God to ask how this could be happening. Alysa, a young girl who had arrived at the hospital at the age of 8 after she and her mother were attacked in their village, ran to comfort Christine. Alysa said, “Christine, sometimes the clouds cover the sky, but the sun is still there.” I had not known or even heard of Christine at the time I began planning this trip, but I recognized this story. I asked Christine if this had happened in May of 2009. She said yes. This was the same story that was told to me by Pat Mitchell in Rochester, Minnesota in late May of 2009. At the exact moment that Christine’s faith had faltered, this story had traveled thousands of miles and lit a flame that we carried back to her. As Bercky said to us when he first picked us up in Bujumbura, it will take many sticks to light this fire.

Dancing is a great part of the culture in DRC, and the therapy for the survivors. All week, Eve had warned Dr. Sean Dowdy that she would have him dancing by the end of the week. Those of us who knew Sean were skeptical, but we have witnessed many miracles this week. When we got back to the lodge, we were all very tired. There was no dancing. And we all simultaneously said…..’next trip.'”

Emma’s gift

November 11, 2010

When offered a choice between a trip to the doctor or a shopping day at the American Girl Store, eight-year-old Emma chose the doctor — hands down. An extraordinary choice, but then, Emma is an extraordinary girl.

Emma and Dr. Svetomir Markovic

This wasn’t to be a typical doctor’s visit. Emma came to Mayo Clinic to surprise Svetomir Markovic, M.D., Ph.D., professor of medicine, oncology, and Charles F. Mathy Professor in Melanoma. In her hand she held a check for more than $1,000. Money she’d raised for Mayo Clinic melanoma research in his honor.

Emma’s reason for the gift is simple. “It’s because he takes good care of people,” she says. She knows first hand the care of Dr. Markovic. He was her father’s oncologist. Sadly, Emma’s father, David, lost his battle to melanoma on August 28, 2009.

So this year, as Emma’s family of Langdon, North Dakota was preparing to participate in their local American Cancer Society’s 2010 Relay for Life, it was Emma’s job to design t-shirts for their team — Team Scrappy. Emma’s mother explains that her husband, David earned the nickname “Scrappy” in high school when he wrestled.

“He was a fighter,” she says, “And I watched how hard he fought melanoma, so it was an appropriate nickname for him and the perfect name for our team.”

Although Emma says that she never quite “got” the Scrappy team name, it really didn’t matter because it didn’t interfere with the t-shirt design: a red star for Dad, and #1, “because Dad was #1,” she smiles, and the word BELIEVE across the front.

As she designed the t-shirt, Emma got the idea of selling them to raise money for melanoma research at Mayo Clinic, “to help find some answers for people with melanoma,” she says.

Emma wrote a thank you letter that accompanied each t-shirt explaining the project and where she was donating the money. “I miss my daddy very much and think about him all the time,” she wrote. “All the money I raise is going to be given to the Mayo Clinic in honor of my daddy’s doctor, Dr. Markovic.”

Her initial goal was to raise $500, and she more than doubled it.

“This entire story brought tears to my eyes,” says Dr. Markovic. “This is a wonderful family who has had to deal with so much. Some months it seemed they spent more time in Rochester than at home. I’ve known them for a long time.”

“Our favorite topic, once we ‘dealt with cancer,’ was to talk about our children,” says Dr. Markovic. “Our children are of similar age and they always had good parenting tips for me, and so I was overwhelmed when I heard that little Emma had done such a wonderful thing and raised money to help me fix cancer. With help like that, how could we ever lose?”

Even at this young age Emma seems to grasp the importance of caring even if cure is not always possible. She’s honored the caring at Mayo through her gift. More importantly, she’s taken up the torch to support the care of people with the disease and its study. She never misses an opportunity to inform others about melanoma and the dangers of the sun. “Learn to wear a hat,” is one of her mantras.

Her enthusiasm is contagious and her salesmanship . . . well, let me put it this way, she dropped off a check for Dr. Markovic and picked up a t-shirt order from him with sleight of hand a magician would envy.

Having accomplished that, Emma and her cousin, Grace set off to summer camp. With a skip in her step and a smile on her face, she left Dr. Markovic saying she’d be back next year with double the proceedings of this year.

Emma’s story was written by Dianne M. Axen, communications consultant in the Department of Develoment, Mayo Clinic in Minnesota

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What Led Hayley Lairmore to Mayo Clinic

July 14, 2010

After her daughter Hayley had been vomiting an average of 10 times a day for nearly six months, her mother Christine happened upon what seemed to her a possible diagnosis: Postural Orthostatic Tachycardia Syndrome (POTS), as described in the first post in this series. In part 2, Mrs. Lairmore recalls what led her to finally make the call to Mayo Clinic to seek an appointment for Hayley with Dr. Phil Fischer, whose podcast and YouTube video describing POTS she had seen:

Check back tomorrow for Part 3, in which Christine describes her experience in calling Dr. Fischer’s office for an appointment.

Hayley Lairmore’s Mayo Clinic Journey

July 13, 2010

I first heard about Hayley Lairmore through a comment card her mom, Christine, sent to Mayo Clinic after their visit to Rochester last December. It was an amazing story of how Hayley had been throwing up an average of 10 times a day for several months, and how Christine and her husband Robert had been unable to get answers from several hospitals in southern California. But early one September morning (about 1 a.m.) Christine stumbled upon a blog post from a Mayo Clinic patient, who described symptoms just like Hayley’s and who mentioned her doctor, Phil Fischer, M.D. That led Christine to this video of Dr. Fischer, and this podcast, and eventually answers for Hayley.

Christine recounts the story in this post on Sharing Mayo Clinic, and you can read more about it in this story published today on ABCNEWS.com.

I was in California in May, and took the opportunity on Mother’s Day to meet the Lairmores personally and to interview Christine and Hayley about the experience. The video below is the first of a series in which Mrs. Lairmore describes Hayley’s illness and how social media tools like blogs and YouTube helped her find answers at Mayo Clinic:

Check back tomorrow for Part 2 of the series.

Lee Aase is manager of syndication and social media at Mayo Clinic.

A beautiful day in the neighborhood

June 17, 2010

It was a beautiful day in this neighborhood.

Mr. McFeely, the beloved delivery man of “Mister Rogers’ Neighborhood,” visited Mayo Clinic on June 16.

Wearing his signature “Speedy Delivery” suit, actor David Newell, who plays Mr. McFeely, sang classic Mister Rogers’ songs with puppets “King Friday” and “Daniel Tiger” in the Gonda building atrium.

Newell was in Rochester as part of a visit arranged by KSMQ Public Television. During his visits to the Gonda building, Mayo Eugenio Litta Children’s Hospital and the Ronald McDonald House, Newell collected sweaters as part of the Mister Rogers’ Neighborhood Sweater Drive. All collected sweaters were donated to the Rochester Salvation Army.

Here’s a video of Newell performing in the Gonda building:

This post was submitted by Lauren Rothering, a summer intern in the Mayo Clinic Department of Public Affairs in Rochester

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Christina George’s Mayo Clinic Story – How the Ketogenic Diet Stopped Her Seizures

June 15, 2010

Larry and Paulette George had never seen a seizure before when their 7 month old daughter, Christina, began having more than 100 seizures a day. They tried medication after medication, but the seizures wouldn’t stop.

Paulette’s sister had heard something about a diet for seizures and mentioned it to them, but when they asked their physician, they were told that it was unsafe. Paulette and Larry were desperate to help Christina and after learning that the ketogenic diet was developed at Mayo Clinic, they flew 1,200 miles from their home in Texas to Mayo Clinic in Minnesota, seeking answers and hope. They eventually moved to Wisconsin to be only a day’s drive from Mayo Clinic.

At 2 1/2 years old, Christina was autistic and didn’t speak. The ketogenic diet stopped the seizures and paved the way for her to have brain surgery at Mayo Clinic. She has not had a seizure since 2001. Today, Christina is a beautiful, healthy, smart and active 12 year old.

Here’s a video of Paulette describing their journey:

Paulette is passionate about sharing Christina’s story in order to help other families dealing with seizures and increase the awareness of the ketogenic diet. She recently released a book about their journey entitled, Good Morning, Beautiful: Winning the Battle Over Seizures. The book’s title refers to the song by Steve Holy — Christina sang the words to the chorus of that song as some of her very first words after the ketogenic diet had stopped her seizures.

Paulette will be at the Barnes & Noble near the Mayo Clinic campus in downtown Rochester, Minn. for a book signing from 11 a.m. to 2 p.m. on Tuesday, June 22. More information is available at http://www.paulettegeorge.net.