Posts Tagged ‘brain tumor’

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!”

Jill Camirand: Off and Running

March 26, 2010

Jill Camirand likes to keep moving. When she finished college in New Hampshire the first thing she did was get on a train and go. She didn’t have a particular destination in mind, she just wanted to see where it would take her.

Now some 10 years later Jill lives in Flagstaff, Arizona, and is an active runner, cyclist and world traveler. She is determined, full of life and still moving.

She wasn’t going to let cancer stop her.

Jill, 33, a massage therapist, is affectionately described by her husband, Rob, as a “healthy, organic-eating, tree-huggin,’ non-smoking, hippy chick.” Her adventurous spirit was tested last year when she started having strange headaches that she later found out were the first signs of a cancerous brain tumor.

“One day I was running and I had the first of what I called the moments,” Jill said. “I would get intense headaches and become confused. Because I was in the middle of remodeling a house, everyone thought it was stress. I pretended that nothing was wrong and I got pretty good at it.”

Assuming it was stress, Jill did what came naturally to her: she took a trip to relax – this time to the Galapagos Islands. When she got back, however, she still didn’t feel quite right. Her headaches and confusion had increased, and she started to have other symptoms as well.

“I finally had to put my foot down with my medical care,” Jill said. That’s when Rob took her to Mayo Clinic in Phoenix, Ariz.

I wasn’t worried, I was relieved

When she arrived at Mayo, the doctors found that Jill had a brain tumor the size of an avocado. The diagnosis was a silent, slow-growing oligoastrocytoma, a tumor that attaches to the brain and grows to create pressure, headaches and other symptoms. Richard Zimmerman, M.D., Mayo Clinic neurosurgeon, said that when Jill came to Mayo she had undergone a rapid change and was in an extreme situation. He added that, fortunately, she had come to the right place at the right time.

When the doctors broke the news to Jill that she had a serious tumor and needed surgery right away, her first reaction was relief.

“I was so relieved that someone found out what was going on. I had become so frustrated that no one knew what it was for so long,” she said. “It can just sound so horrible when you hear about all this but I just didn’t want to go there …When they told me I said: cool, now take it out.”

Jill underwent two surgeries at Mayo Clinic to remove most of the tumor from her brain. Following the surgery Jill’s treatment plan included months of radiation and chemotherapy to destroy the remainder of the cancer cells.

How she rolls

In the days just after Jill’s surgery, it became evident to the medical team at Mayo Clinic that this determined, athletic woman faced her condition like a runner preparing for a race.

“She is an amazing person,” said Alyx Porter, M.D., Jill’s neurologist at Mayo. “She has a passion for life and a great sense of humor. She was accepting of the diagnosis and willing to be aggressive to fight it head on – she is an inspiration and a joy.”

Within a few short weeks, and with her doctors’ clearance, Jill was back to cycling and short runs despite going through her treatments. In a matter of months she built back enough physical strength to run a 10K race. Although never one to set lofty goals, Jill has set her sights on competing in a marathon this spring in Big Sur, California.

“If I can go through cancer, I can do a marathon,” Jill said. “My goal is just to finish. I can read my body pretty well and if I have to stop and walk, well, what a pretty place to do it.”

The race continues

Dr. Zimmerman, who performed Jill’s surgeries, said that within her story is a great a message of hope, fighting and winning. The fact that she returned to her normal life, an “exceptional life” in terms of physical condition Dr. Zimmerman says, is testament to her full-steam-ahead spirit. Jill’s progress amazed her medical team and everyone around including Rob who has been with her stride-for-stride during her treatment and recovery.

“At the 10K, it was so inspiring to see Jill cross the finish line a mere three months after two brain surgeries, and six weeks of chemo and radiation,” Rob said. “Her treatment is the biggest race of her life. We’ve got the best doctors in the world and we’re in the best place in the world for this. She was in good spirits going into this and I know she’s going to come out of this better than ever. I am so proud of her.

“It’s a long road that lies ahead, but there is sunshine at the end.”

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

“It really should be called The Mayo Family”

February 8, 2010

Andrew Mork is being treated at Mayo Clinic for juvenile pilocytic astrocytoma, a rare cancer of the brain and spinal cord. Andrew’s mother, Corrie, shared their Mayo Clinic last summer via e-mail, and they also decided to tell about their experience via video when Andrew was in Rochester for appointments. Mrs. Mork’s e-mail is below, along with some video snippets and a January update:

My son Andrew left last summer (2008) for San Antonio, TX for Lackland Air Force Base for basic training. Little did we know that when we received a phone call hoping and praying that it was Andrew letting us know that everything was going well, it was a doctor on the other end telling us that they found a mass at the base of Andrew’s brain.

Andrew had a doctor at the Air Force base, Dr. Lyell Jones, who is a neurologist and had actually done his residency at Mayo Clinic with Dr. Uhm. We recently had an appointment with Dr. Uhm and he was pleased to let us know that Dr. Jones will be returning to Mayo Clinic in July after his retirement from the Air Force. (Editor’s note: Since this was written, Dr. Jones has returned to practice at Mayo Clinic.)

If it wasn’t for Dr. Jones insisting that Andrew get to the Mayo Clinic I really have no idea what the outcome would have been for him.

We have had past experiences with the Mayo Clinic about six years ago with our daughter and it was just as wonderful as it is now.

Andrew has a very rare brain and spinal cord cancer, which he finished radiation for on May 8, and on May 12 he underwent surgery for a pilonidal cyst. When this heals he will then have surgery on his hips for avascular necrosis.

It’s funny when you think about all of these problems that he has going on and yet he continues to have a positive attitude about it all. Andrew is 19 and his life has been put on hold, yet he doesn’t let it bother him. I can’t quite figure it out, but all I know is he has this amazing ability to defy the doctors and everyone else. He doesn’t listen to what could be the worst-case scenario and hasn’t from the beginning, instead he listens with his heart and soul.

Andrew’s radiation oncologist is Dr. Nadia Laack. Without her and her willingness to get the appropriate treatment for Andrew, I don’t think life would be somewhat normal for us.

It’s funny, when I flew to Texas to be with Andrew while he was in the hospital, Dr. Jones came in, introduced himself to me, looked me straight in the eyes and told me “Do you know that I haven’t had a decent night’s sleep since your son came into this hospital? I am up every night thinking about him, how we are going to get him better.“

When Andrew was in his fourth week of radiation, we were waiting for Dr. Laack to come in for Andrew’s weekly visit. After checking Andrew out, we began talking and she looked at Andrew and me and said, “Last week I went to a conference on cancers of the brain and spinal cord. I talked about your cancer with many colleagues who have dealt with patients with the same type and in the same area as yours. We discussed how many treatments and the dosage of radiation. I can now tell you that I am able to sleep soundly at night knowing that we are taking care of you appropriately. Do you know that even before I met you, I knew about you and your cancer and haven’t had a decent night’s sleep until after this conference.”

Andrew and I just laughed and told her about Dr. Jones and what he had said.

The caring and compassion of the Mayo Clinic is above anything I have ever come across. I worked in an Emergency Room for 12 years and our hospital is nothing like yours. Your attention to detail, the privacy of others, the smiles, and the compassion you give are above anything I have ever seen or experienced. We are not rushed in and out like an assembly line; you treat the patients and families with care. No matter what part Andrew and I have been to, there hasn’t been one employee who has been in a foul mood.

The Mayo Clinic should not have Clinic in its name. It really should be called The Mayo Family, because with the experience we have had over the past 8 months, it has truly been a family and not just a clinic.

Andrew is a smart kid and has not given up hope that a cure will be found for his cancer. At this point there is no cure for him. Our only hope is that his cancer is a slow growing type, so we have more years than most do.

One more thing: Last week we watched the last part of Farrah Fawcett’s story. During one part, she was reading from her journal and had said that there isn’t a day that goes by that she doesn’t think about dying from the cancer that she has.

I heard from the other side of the living room, “Huh” I looked over and asked Andrew what he meant by that. He said, “There isn’t a day that goes by that I EVER think about dying from cancer.” I said, “Really? What about the day we were told that the pathology report came back and it was cancer, you and I cried when we found out.” Andrew said that is was a shock to him to hear it, only because he really believed he didn’t have cancer. Andrew then said to me, “I couldn’t imagine going through life thinking about dying from cancer everyday. That’s not how I want to live my life, I just don’t let it bother me.”

Smart kid, I wish we could all think like him. I truly believe that with all that has happened and all that is happening currently, without the Mayo Family, Andrew wouldn’t have this positive outlook on life.

Update: Mrs. Mork sent the following in January, in advance of his nine month post-radiation checkup, which is coming up Feb. 18.

We have been returning to Mayo every three months for repeat MRI’s and check ups with Andrew’s doctors. I will say that being a parent and wanting everything to be back to “normal” hasn’t happened.

During our September 28 visit Andrew’s tumor had grown 1 mm in size, but according to the doctors they are uncertain if it is from radiation or it is actually growing. There was a “tail” of cancer cells that were going downward farther into his spinal cord and those have since disappeared. Thank the good Lord for that.

Andrew’s spirits are up and he continues to remain positive, considering he has lost a lot of weight and cannot gain it back. The radiation really took a toll on him and his appetite and continues to do so. Currently he is applying for cancer scholarships for college and we hope that he will be able to begin college in the fall of 2010.

Andrew has faced a lot of battles since the fall of 2008, but he continues to move forward and fight like a hero… my hero.

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Teen regains life after bout with brain tumor

February 3, 2010

Raley Mae and her horse Harry

Raley Mae Radomske was all set to begin a new chapter in her life the summer of 2009 when the unthinkable happened.

A national rodeo champion, Radomske, 18, experienced a seizure as she was readying for her move from her hometown of Ellensburg, Wash. to Las Cruces, New Mexico to start college.      

Days after settling into her new home in New Mexico, an MRI revealed a startling blow.

I found out I had a brain tumor,” recalls Raley Mae, “That (news) will change your life forever.”

“We were crushed and very scared,” says her father Harland. “It (the tumor) was the size of a golf ball.”

 AN UNEXPECTED DIAGNOSIS

 Horses have always been a huge part of Raley Mae Radomske’s world. Her parents Jody and Harland “Ske” Radomske own Venture Farms – Caribou Creek Ranch in Ellensburg where they raise and breed cutting, roping and barrel performance horses. 

 Following in her parents’ footsteps, Raley  Mae says she became enamored with horses at the tender age of three when her parents led her around on a little pony for the first time. She grew up learning horsemanship, cow cutting and rodeo from her parents who are both accomplished cutters.  Cutting is a competition that consists of a horse and rider and a herd of cows, where the rider (cutter) has to complete a specific amount of skills in a set amount of time.

                       Raley Mae went on to become a student leader and competitor in the sport of rodeo. In 2008, she was the National Student President of the National High School Rodeo Association (NHRSA) and was the organization’s National Student Vice President in 2007.  She earned four national rodeo championship titles including 2008 National High School All Around Champion Cowgirl.

             Her accomplishments earned her a full rodeo scholarship to attend New Mexico State University to major in Marketing.

             That was Raley Mae’s plan until she started experiencing seizures.

             “I had my first seizure in front of my Mom. I didn’t remember having a seizure. I just blacked out. I wouldn’t have known unless my Mom was there to witness it,” Raley Mae remembers.

             “It was really scary,” says Jody.  “I had never witnessed a seizure before and I just held her up so she did not hit the floor. I grabbed my phone and called 911.  Then she stopped and slowly started to respond to my questions to her. I was pretty panicked.”

             Raley Mae’s father said there were no telltale signs prior to the seizures that anything was wrong.  “She went to the national rodeo finals, attended conferences and ran meetings.  She competed in all her events,” says Harland who said he was worried his daughter might be epileptic when the seizures began.

             Harland said the family, which includes Raley Mae’s siblings Jason, 26, and Kyle, 20, wanted a second opinion.  Upon the suggestion of family friend Dr. Brian Chong, who is the Chair, Division of Vascular and Interventional Radiology at the Mayo Clinic in Arizona,  the Radomskes immediately travelled to Arizona to meet with Mayo Clinic surgeon Richard Zimmerman, M.D.

 IN FOR THE FIGHT OF HER LIFE

             Raley Mae’s tumor presented a strong challenge from the start. The tumor, characterized as a Choroid Plexus Papilloma, was large, accompanied by a large cyst and nestled deep in the left side of her brain.  Its location would eventually affect her speech and ability to understand both written and spoken language, explains Dr. Zimmerman, adding.  “That is especially troubling for a young woman starting college.” If left untreated, the tumor could have become life threatening.

             “This type of tumor is uncommon, and occurs in young children, but less so in adolescents,” says Dr. Zimmerman of this rare tumor for Raley Mae’s age group. He explained Raley Mae was able to function as long as she had because certain types of tumors initially grow slowly allowing the brain to adapt to its presence until a critical point is reached.   The Radomskes agreed Raley Mae’s surgery would be at Mayo Clinic.  “We arrived with the notion it (Mayo Clinic) was a superior facility.  We were impressed with the thoroughness,” says Harland.

             Dr. Zimmerman says he anticipated Raley Mae’s tumor to be benign, however a pathology report taken during her first surgery revealed her tumor was not typical.  “It appeared more cancerous than we thought,” Dr. Zimmerman recalls.

             Since the tumor was not benign as they had initially thought, Dr. Zimmerman says the game plan had to change.  Raley Mae and her family needed to know the risks involved with aggressively cutting deeper into the tumor and getting closer to the brain structures – risks that included stroke. 

                       Dr. Zimmerman said another MRI was taken to determine how much of the tumor was left and that the family opted to continue with an aggressive second surgery later that week to remove the rest of the tumor.

“Both Raley and her family were brave,” remembers Dr. Zimmerman. “They had faith in their religious beliefs and faith in Mayo Clinic”

During her next surgery, Raley Mae’s parents learned the tumor began to bleed heavily. 

 “My wife and I immediately asked for a pastor and we prayed with him (at Mayo Clinic) for five hours,” recalls Harland.

  “They (the staff) not only provided quality care, they really make you feel like they are interested. They are not just doing their jobs, they are really caring people.” 

 “Nora Vetto, the operating room nurse, was excellent in her job of reassuring us, letting us know what to expect, showing us compassion and helping us to maintain our confidence,” says Jody. “She genuinely cared. She was exceptional.”

 Upon waking from surgery Raley Mae wasn’t able to speak and was paralyzed on her right side.  “There were signs of hope the paralysis wouldn’t be permanent,” says Dr. Zimmerman.

A few days later, Raley Mae’s family and her team of Mayo Clinic caregivers experienced that  hope first hand.  After returning from dinner, Raley Mae’s parents and brother Jason saw her clench her right fist and raise her right leg in bed.

 “We walked into her ICU room and she showed us what she could do,” Jody remembers. “My husband and I started crying and praising the Lord. We were so overjoyed. It was such as happy moment. We felt like we were going to be alright now.”

 Raley Mae’s progress surprised even her doctors. 

 “There was no question we expected to see recovery, but to happen like this (so fast) was an uncommon phenomenon” says Dr. Zimmerman.

 THE ROAD TO RECOVERY 

Raley Mae’s battle to regain her life as she knew it was only beginning.

 “She had a global deficit in function. She had difficulty with visual perception; she had difficulty communicating and needed help with self care and mobility,” recalls Carolyn Kinney, M.D., a specialist in Physical Medicine and Rehabilitation at Mayo Clinic.

 “When I saw her the first day, she was in pain. She didn’t want to get up, she just wanted to sleep,” remembers Bernadette Luberda, a Mayo Clinic occupational therapist who was assigned to help Raley Mae with her daily rehabilitation.

 Raley Mae connected with Bernadette when she realized  they had something in common.  Bernadette overcame a brain tumor was she was 16 years old and could relate to the frustration Raley Mae was dealing with in having to re-learn basic life skills most people take for granted. 

 At the start of her treatment at Mayo Clinic’s inpatient rehabilitation unit, Raley Mae – a world class athlete – needed a walker to lean against to help her get around.  She needed to re-learn how to dress herself and complete once mundane tasks such as counting money, crafting an e-mail and applying the eyeliner she loved to wear.  What used to take mere minutes to do, now could take an hour or more.

 “Sometimes she would start crying. I would tell her it may take longer, but at least she was doing it herself. It was incredible to see her overcome the obstacles,” says Bernadette.

 Part of Raley Mae’s rehabilitation also included practicing her rodeo skills.  Her family brought her a roping dummy (fake calf) and lariat rope so she could practice roping and work on regaining her coordination. Raley Mae would practice her rodeo skills on a patio outside Mayo Clinic Hospital on the Phoenix campus.

 Bernadette says Raley Mae regularly shared her determination to help motivate Mayo Clinic’s other patients who were undergoing their own physical therapy.

 “We have a group called ‘the breakfast club’ of patients who need rehabilitation.  They would eat breakfast together every morning. Raley would sit at the middle of the table and talk to all the patients and encourage them.  She told them what she had been through and not to give up.  Everyone looked up to her,” says Bernadette.

 Raley Mae admits she is not positive all the time and still has moments when life’s daily struggles get her down.  But she says the heath scare has humbled her.  “It taught me be thankful for what I’ve got.”

 BACK IN THE SADDLE AGAIN

 Raley Mae’s hard work in rehabilitation  paid off. After a month of living at Mayo Clinic, she was given the go ahead to return to New Mexico and resume her studies.

 “She is diligent and always had a hard work ethic She made a remarkable recovery and continues to make incredible progress,” says Dr. Kinney. 

 Since her tumor was characterized as  atypical (neither benign nor malignant) and  there is always a chance for recurrence, Dr. Zimmerman and the staff at Mayo Clinic are keeping a close watch on Raley Mae, requiring her to come in for regular check-ups every six months 

 Now 19, Raley Mae is in the midst of a busy semester at school, carrying a full courseload which she balances with the speech and physical therapy sessions that are provided to her at school.

 And she’s back in the saddle.  In fact, she’s even given Dr. Zimmerman a special tribute. Raley Mae re-named  her barrel horse “Dr. Z.”  after the doctor she credits with helping save her life.

 Raley Mae was cleared by her Mayo physicians last fall to ride Dr. Z and is working her way back up to being able to compete for her college rodeo team again.

 She says nothing was ever going to keep her away from riding.

 “It would be like trying to live without water,” says Raley Mae.

Please click on the following link to watch Raley Mae describe her care at Mayo Clinic.

Raley Mae’s story was submitted by Julie Janovsky-Mason a communications consultant at Mayo Clinic Arizona.

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to FurlAdd to Newsvine