From a child with cancer, a lesson in living

Originally by Sean Fine at The Globe and Mail
Photo Credit: Kevin Van Paassen
Edited by: Louise Cooper

Some children don’t like school and stay home when they can. Other children don’t like to stay away, even if they’re sick. And then there’s Meaghan McCarthy, a five-year-old in Toronto, Ontario, Canada.

As this school year comes to a close, Meaghan still hates to miss a day. For six months of her very first year in school, in junior kindergarten at Earl Haig Public School, she went to class even after her regular chemotherapy treatments. Sometimes, saving minutes, she left hospital with a tube dangling from a sticky patch on her chest.

Once, her mother, Johanna McCarthy, told her teacher, Matthew Bush, that she was starting a new treatment the next day and would have to miss a visit from a scientist. Meaghan showed up anyway, wearing a surgical mask to protect her against germs.

She went to school when she had no hair. She went when she needed a walker to get around. She went when she could no longer use the walker because she’d broken her tumor-weakened arm. The school board supplied an assistant, Stephanie Tam, who watched over her and carried her downstairs to music and upstairs to library and literacy classes. Ms. Tam could see her waiting outside the classroom door, impatient for class to begin.

Meaghan has hair now because the chemotherapy didn’t work on her rhabdomyosarcoma, the operations and the radiation didn’t work, and her parents, Dean and Johanna, are trying something else, an experimental protocol – a second one – overseen by the Hospital for Sick Children, which involves a weekly chemotherapy injection and a daily oral dose of anti-rejection drugs at home.

“It’s yellow,” Meaghan says of her hair, in a spirited, clear, high-pitched voice.

“It’s not yellow,” her father says.

“Yellow-ish,” she insists.

In September 2010, Mr. Bush explained to the class about Meaghan having cancer. She was late starting because she had a broken leg. Her leg broke last July, says her father, because the radiation had made her left femur soft, and she fell. Mr. Bush told the class to be careful around her. In October, she shed her body cast and came to school for the first time.

She was always smiling, always happy. Always curious and engaged in everything possible, whether in learning her letters, role-playing at the dramatic-play centre or in gym class, in which she is now able to take some part.

“She’s been an incredible teacher to us,” Mr. Bush says. “She has a real radiance. Her joy in coming to school means that when she’s here, she’s beaming. I think her classmates have some enhanced empathy because of what she’s taught them – all of them.”

Her classmates would take her backpack to the cupboard, and fetch it again at day’s end. “There were students who would just show up at her side and do whatever needed to be done,” Mr. Bush says. “Some kids have really put their best foot forward in including her into the fabric of the classroom. When she leaves, they say, ‘Bye, Meaghan, we love you.’”

Her cousin Joshua, who is 6, told her one day about Terry Fox and how he lost his leg and would take his artificial leg off when he went swimming.

“Why did he lose his leg?” she asked.

“Because he had cancer,” Joshua said. “Not the same kind of cancer you have. You’re not going to lose your leg.”

But her left leg will not grow again between the thigh and the knee, because of the radiation. It is shorter than the right leg. When she stands in her bare feet, one foot is on its toes. Even so, she likes to run, with her uneven gait.

Why does she love school?

Mr. Bush explains it this way: “She makes connections with people and with her own knowledge and experience, she shares that with others, and gets back that feeling of being loved and valued and included.”

“She gets normalcy,” says her father.

“Because I get to play,” Meaghan offers.

During the second week of June 2011, in a terrarium in Mr. Bush’s class, a butterfly emerged from a cocoon with a broken wing. In past years, other broken-winged butterflies have been trampled by their peer butterflies. Not this year.

The class celebrated Meaghan’s fifth birthday this week with cupcakes, and her grandmother gave the

thumbs-up at another milestone achieved. “My goal is to get her to graduate kindergarten.”

The only time Meaghan cried in class was when she was doing a presentation for “show and share” about her dozens and dozens of bravery beads given out by the Hospital for Sick Children, one for each medical event she has endured. And the other children cried with her.

One day in the spring, her parents learned that the first experimental protocol of chemotherapy and anti-rejection drugs was not working. That night was the spring concert – a highlight of the year.

Meaghan stood on the stage with her classmates singing (“Sitting on the farm, happy as can be …”). At the end of the song, all of the students fell down. Only Meaghan remained standing, because her bones might break if she fell.

But Meaghan didn’t mind. “I was the only one who got to stay standing!”

As of August 1, 2011, Meaghan continues with her treatment and looks forward to a new school year.

 

Since Sarcoma, I Have…

By Louise Cooper

Mary Sorens, who created the Adult Bone Cancer Survivors website, invited members to add to the statement: "Since sarcoma, I have...." What follows is a collection of some members’ contributions.

Mary:  “Since my sarcoma diagnosis in 2003, I have adjusted to my body's new quirks. I've climbed mountains, danced the night away, and discovered a deep love for life.”

Cari:  “Since my diagnosis I have learned that my body will continue to surprise me in SO many ways – I have REALLY learned that even though a doc might tell me something, there is always another side to it – and I have learned that miracles do happen – and good things can still happen in my life (finding a loving husband and now expecting a baby!).”

Billy:  “I have also been surprised by how my body continues to adapt. I was always an active person prior to surgery and I have returned to most of those activities like golf. I have hopes of one day returning to the baseball field. Walking up the stairs in the Statue of Liberty was a feat that I didn't think would be as easy as it was. Even walking 20-30 blocks in Manhattan was something I didn't think I would be able to do but it turned out being fine. I have returned to work in full capacity which is no small accomplishment considering I work on construction sites regularly.”

Tara:  “I have…

• Had 18 more months of LIVING.
• Watched my son start preschool, perform in school programs and gotten to be 'room mother'
• Rode most of the roller coasters at Cedar Point in Sandusky, OH (check out the travel channel...you'll understand why this was such a great feat).
• Gotten accustomed to my new normal and amazingly can go days without even remembering that I had cancer.
• Made the decision to add a new addition to the family. Working with a reproductive endocrinologist to do that.

On the down side:
I have learned that I will probably always have an aversion to certain smells. Some antiseptic cleansers, big red and extra peppermint flavored gum…I can smell those from across a room. I have also learned that I CANNOT make a pitcher of red Kool-Aid® either.”

Mariya Jo:  “Sarcoma made me redefine what I thought courage means. Courage also means:

• being able to cry
• being able to ask for help and assistance and leaning on your loved ones
• letting yourself feel weak and vulnerable, being very true to what you are feeling at that moment
• striving to find the best possible solutions for any of life’s curve balls
• never giving up hope

This quote has gotten me through some very difficult days…I hope it will help you in some way as well.”

' Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day, saying, "I will try again tomorrow."' ~ Mary Anne Radmacher

Dick:  “Since my diagnosis with sarcoma, I have gone on a cruise, learned to take time to enjoy my family, and have learned what great family and friends I have. I have also learned to use my situation to try to help others through their battles in life, whether it is cancer, or another challenge. I try to draw parallels and look at the upside of the situation, no matter what it is. We are dealt a hand of cards to play in life, and it is up to us to make the most of that hand and decide whether we will fold, or go all in...I elect to go ALL IN.”

 

Meeting Ike Davis

By Bruce Shriver

On July 17, 2011, Ike Davis, the star first baseman of the New York Mets baseball team, held a benefit dinner to help fund research through the Liddy Shriver Sarcoma Initiative and Solving Kids Cancer. The Liddy Shriver Sarcoma Initiative and Ziopharm Oncology invited six sarcoma patients to attend the event.

• A 9-year old rhabdomyosarcoma patient, Lydia, and her mom, Nicola
• A 12-year old Ewing’s sarcoma survivor, Yehuda, and his dad, Mark
• A 13-year old brain tumor patient, Josh, and his mom, Michele
• A 18-year old osteosarcoma patient, Janina, and her dad, Paul
• A 25-year old Ewing’s sarcoma patient, Jamie, and her dad, Robert
• A 40-year old angiosarcoma patient, Lauren, and her daughter, Caelan

We asked each of them to write a brief note about why they would like to meet Ike. We hope you find their essays to be as wonderful as we did.

Lydia’s essay

Hi my name is Lydia Stephen I’m 9 years old I have cancer I found out about my cancer in November 2010 the name of my cancer is rhabdomyosarcoma it’s a muscle cancer. I went through a near death experience i had a fungal infection in my chest that almost took my life my family stood beside me and kept me strong and gave the will to survive and I also had a great team of doctors and nurses that did not give up on me. at this moment I’m doing much better and i thank god my family and the wonderful support from the doctors at children-hospital. I think the Mets rock and think it will be real cool if I meet Ike Davis I would really like that and I will tell all my friends I met the best first baseman from the Mets.

Yehuda’s essay

Hi, this is Yehuda Furman, I am 12 years old and going into 7th grade and it would be awesome if I could meet Ike Davis. Both my father and I are huge Mets fans. My dad grew up in Queens and has been a Mets fan since birth. He was born just in time to watch the Mets win their first World Series in 1969. I was born in Queens just a few miles from Shea Stadium and I have also been a Mets fan since birth. I got sick with Ewing’s Sarcoma in May 2005 and I was treated at Memorial Sloan Kettering in Manhattan. When I was sick Mike Piazza came to visit the hospital I was in but I was too sick and I had to be in isolation and I didn't get to see him. Me and my father are huge Met fans so this was a big disappointment to us. As a big Mets fan I have a bunch of Mets on my fantasy league team. I have Ike, David Wright, Daniel Murphy and K-Rod. Ike and David Wright being injured is a great loss for both the Mets and my fantasy team. Also another reason is that Ike Davis is a great role model especially the way he is going through his injury, it is very inspiring (I watched the interviews on SNY). Also Ike Davis is Jewish, like me. I would like to wish Ike a “refuah shelayma” - Hebrew for wishing someone a complete and speedy recovery so that he can get better and help the Mets and my fantasy team win some games. When I was sick, I was in a full body cast for a few months and I didn’t walk for a year. It took another year before I was able to play in Little League again, so I know what it like to not be able to play ball while waiting to get better, so maybe I can give Ike some advice too.

Josh’s essay

Hi, My name is Josh Cramer and I'm 13 years old, My mom has always told me that ever since I was little I always had a bat or ball in my hand. I think that was because my older brother Jason was playing baseball and I always tagged along to watch him and his team play and my grandpa's brother played in the big leagues before my mom was born. I guess you could say baseball is in my blood. I started playing baseball when I was 6 and from the minute I stepped on the baseball field I was in love with the game and all that it means! I have learned many things playing baseball. I have learned physical skills and character skills too. I have learned to be a team player, to be a good sportsman and to be disciplined both on and off the field. I learned these skills by having good coaches and positive role models. These skills have also helped me deal with the fact that I will be unable to play All-Stars or spend a week at Cooperstown Dreams Park with my teammates because of my tumor but will be in the dugout cheering for my All-Star team and watching my Cooperstown team on the internet. My big brother Jason is one of my role models but I have never had the opportunity to meet any of the professional baseball players that I see as my role models. Meeting Ike Davis would be an amazing opportunity to thank him and his teammates for being positive role models. It's not something most people get a chance to do and I would love to be able to go back to my teammates and tell them about this awesome experience.

Janina’s essay

Hi my name is Janina , I just turned 18. On October 23, 2010 I was diagnosed with Osteosarcoma Stage 4. It has also spread to my lungs. I must admit I enjoy a good baseball game but nowhere near as much as my dad. My parents have done so much for me during these last eight months. Dad recently returned to work after a serious accident there. He was in bad shape last summer so I helped take care of him, now he takes care of me. When I’m in the hospital, he gets out of work and goes directly to the hospital to spend the day with me and then goes back to work at around 10P. I know it’s a rough schedule and I can see he’s so tired from lack of sleep, but he never complains. Due to my treatments, I can’t plan much but it looks like July 17th,, the day of Ike’s charity event, I am in between treatments so that’s perfect. Unless I have an emergency visit to Mount Sinai, I should be home and able to go (if I win the tickets). A while back my dad had mentioned Ike Davis to me. I know he lost a close friend to sarcoma and he has done many fundraisers in honor of his childhood friend, Mike. It’s good to know some caring people and organizations are trying to raise/spread awareness. Many people have never heard of sarcoma. No one in my family ever heard of it either until I was diagnosed myself. This Father’s Day that just passed, my brother, my sister and I were going to spend the afternoon with dad. As part of his gift, we were able to get him four tickets to the Mets vs. Angels game at Citifield, (they lost :( ). My ticket was wasted. I was still in the hospital feeling sick due to the VP16 chemo I had just received so I missed out. This would be a perfect way to make up for it and spend some time just me and my dad. With dad being such a big fan of the Mets, it would be great to meet Ike and enjoy the company of others raising awareness and funds to someday soon find a cure.

Jamie’s essay

Growing up I have always been a Daddy’s girl. Some of my earliest memories are of me sitting in my Dad’s “pocket lap” eating chocolate ice cream and watching baseball. I’ve even seen a picture from the day I was born of him holding me in his arms while he was watching a Met’s game the year they won the World Series. As I got older and could actually start playing, my dad would teach me how to hit, swing, and catch. He wasn’t fazed by the fact that I was a little girl who loved pink and dolls, he knew one day he would be able to pass on his love for the game. He even coached my little league softball teams for years, as well as my younger sister’s teams. I may have not been a star player, but he was my biggest fan. When I became sick our relationship changed drastically. I was 19, away at college in Florida, and had just gotten my first taste of independence. I was forced to leave everything to get horrible chemo, radiation, and surgery. I had to become totally dependent upon my parents for everything and it was a hard adjustment. While I was going through each day not knowing what to expect, there was always one thing that was a constant: that my dad would be there with me every step of the way. He was there for my surgeries, the chemo, the radiation, the 6am drives to the city and 12 hours later the drive back, the being sick and wanting every type of food in the world when I would actually eat, to the lovely mood swings that the steroids caused; my dad was there at my bed side. During my treatment there were times that tickets to baseball games would become available and all of the child life specialists knew that I was the one to call. Not only was it a welcome day of enjoyment, but it was a great way to feel like we were normal again, and more importantly it was a great way to show my dad that I appreciated his time. It would be great to meet someone that I have not only been a fan of, but someone who also gives his time to cheer up the people that look up to him.

Lauren’s essay

It would be very special for my daughter, Caelan and I to go to this event for the reason that I have been fighting angiosarcoma cancer (ASC) since May of 2009. I am 40 years old and married to my hero, Matthew. This August will make eight years for us. Our daughters are Caelan, seven years old, Taylor five years old and Dylan Grace two and a half years old. Matthew (a NYC Cop) has been an amazing supporter and takes on a lot of household duties and child care when he is not working. This journey has been incredibly hard on all of us.  My daughters know what I have but do not really grab the concept of the reality of ASC. They live in fear knowing that people do die from cancer and mommy may too. I talk to them any time they have questions and they hold on to the hope that mommy will be ok because I take my medicine and go to chemotherapy every week to kill the cancer. A night with Ike will be special to me being I am a big time Mets fan!!!!! Although they are not doing so well I still love them as champions! I would love to meet him and get another Mets memorabilia for my little collection. I got a signed jersey from Mike Piazza, picture signed from Gary Carter and a picture signed from Kevin Elster. A night out like this will do wonders for Caelan and I. A great way to get our minds off of our struggles. We try to get some alone time for each of my daughters and go out for special events, but due to the cost of medical expenses we can’t afford much. 

 

V8N4 ESUN Copyright © 2011 Liddy Shriver Sarcoma Initiative.

No Ordinary Tree House

Filed by: Louise Cooper

The short video “Josh’s House in the Trees” is the bittersweet story of an ailing boy’s wish to have a dream tree house – one that even included flush toilets!   The story’s message is one of optimism, community and efforts to move forward.  Despite cancer and its intrusions, this boy had ideas – big ideas! – of his own.

It was in October of 2004, that Joshua Brenneman, aged 4, was diagnosed with Ewing’s Sarcoma.  A tumor had invaded his C-6 neck vertebrae, destroying much of the bone.  The tumor was deemed inoperable, but intensive chemotherapy (14 rounds) and 31 proton beam radiation treatments caused his oncology team to declare that Josh was “stable” after months of protocols.

The clinical interventions left him weak and in pain.  It would not be known until August of 2005 that the side effects of his treatments had damaged his throat causing swallowing difficulties, his airway to constrict, and the development of hypothyroidism.  A g-tube and tracheostomy proved necessary for him.  Eventually, the g-tube was no longer required; and, although the trach tube was removed, Josh still has a stoma.  (His parents, Don and April, are presently seeking opinions on whether to have it surgically closed.)

This past winter, a celebration was held to mark Josh’s five years of being cancer free.  His mom, dad and four older sisters Jasmine, Joy, Jubilee and Jordyn made a decision that this would be a fund raising event and a time to honor all who had been part of their shared cancer journey.  April says, “It’s about hope, education and support.  We dream of the day a cure is found.  Through donations and awareness, we hope to make this dream come true.”

Josh, his family and countless volunteers started living in hope and courage from those early days in the Brenneman’s backyard.  Josh’s drawings of the plans for his dream tree house would prove to be, as his dad says, “the house that love built.”

 

Alone No More

Originally reported on: ABC 6 News (Melanie Bloom) KAALtv.com. Edited by: Louise Cooper.

Mike and Deb Watters learned the hard lesson of cancer when their daughter, Corinne, was diagnosed with Ewing’s Sarcoma.

“There’s nothing that makes you understand you’re not in control of your life like hearing your child has cancer,” said Mike.  Deb says, “You hear those words and it just echoes through your head, in slow motion.”

Thus began their journey with Corinne, then six years old, of chemo, surgery and chemo, again.  The extent of her tumor involved both the hip and leg.  Pre-operative chemo did shrink the tumor enough that a surgery was planned but, ultimately, the surgical team would need to cut Corinne’s femoral nerve – the nerve that controls the thigh.  Eventually, a nerve graft was performed which would, in time, help to get Corinne back on her feet and even score a goal for her hockey team!

During the many lengthy stays at the hospital, Mike and Deb noticed that a young patient, Victor, always seemed to be alone – without parents or extended family, without visitors.  Deb says, “One night, I tucked Corinne in, it was quite late, and I went for a drink of water.  On my way back, I passed Victor’s room.  He lay in his bed, with the television on, awake and holding onto a few stuffed animals.  And, it just broke my heart.”

Deb asked about this little boy and was told by the nurses that he was a foster child without a stable family.  Victor’s cancer, the same as Corrine’s, was quite advanced and surgery was not an option.  Chemo cycle after chemo cycle were Victor’s treatment, with the hoped for result of stable disease.

“Our hearts were drawn to him,” say both Deb and Mike.

Victor did not remain alone.  The Watters eventually brought him home – as their son!  An adoption process, which gave Victor a family and a brother for Corrine, was completed.

Victor just turned 14 and Corinne is now 11.  Corrine remains cancer-free but Victor is, once again, on chemo (for the fifth time).  He and his family still look to the future with hope and love.  Victor plays soccer and he and his sister cheer each other on in their chosen sports.

Their history of cheering each other on began almost five years ago during their treatments together.  The family says, “It’s like he’s been here forever.”  Victor adds, “A family who actually loves me.”

V8N3 ESUN Copyright © 2011 Liddy Shriver Sarcoma Initiative.

Elite Runner Back After Radical Cancer Surgery

Original Story by GINA KOLATA, New York Times

The youthful Serena Burla was an extremely competitive runner, beginning in the 3rd grade.  According to Gina Kolata of the NY Times, "She wanted to win every race and would break down in tears if someone beat her." One time, her father (a high school track and cross-country coach) told her she wouldn't be permitted to run if she didn't stop crying when she lost. She continued running throughout high school and college. In 2006, she became an all-American 10,000-meter runner. 

Burla stopped competing after college but continued to run for personal enjoyment. Running provided relief from the stress of her job teaching special education to 3 and 4-year old children. She got married and had a child. Then she joined the running team Riadha where she formed a partnership with the coach of the team, Isaya Okwiya.  In 2009, Burla was quoted in a Runners World article, saying of Okwiya "I owe it all to him just for getting me back gradually and knowing just the right workouts to do, hammering harder than I thought was possible this soon after (childbirth). I popped back into racing pretty quickly."

Okwiya knew of her running records from high school and college and observed that she had great potential.  When he found out she wanted to run a marathon, he was ready to help her do it.  She is, Okwiya said, "fiercely competitive but incredibly patient." She began training in earnest, competing in the national half-marathon championship in Houston in January of 2010.  Before the race, however, she began to have pain in her right hamstring that would not go away.  According to Kolata, Burla continued to train, thinking that the pain was caused by inflammation, common among runners.  However, Burla said, "When I stopped (running), it was incredibly painful." 

Kolata describes the scene, saying, "Okwiya was there and watched as she hobbled to the starting line. After the race, in which she finished second, Okwiya told her: 'This is really serious; we have to get it taken care of now.'" He recommended she see Dr. Daniel Hamner, a specialist in sports injuries located in New York. An ultrasound revealed what seemed to be fluid in her hamstring, which could have been blood or water; however, Dr. Hamner was unable to extract any fluid at all from the mass and ordered an MRI.  Burla was shocked when she was given the diagnosis:  synovial sarcoma, a highly malignant tumor.   

According to Kolata, Burla traveled to Memorial Sloan Kettering Cancer Center in New York to be treated by orthopedic oncologist Dr. Patrick Boland. Synovial sarcoma like Burla's is best treated by surgery. In Burla's case, this would require removing the entire biceps muscle of her hamstring. Kolata quotes Dr. Boland saying, "You can't stitch it back together. There's just nothing there."  Boland was experienced in surgery on soft tissue sarcoma, but, according to Kolata, "He had never had a patient like Serena Burla, a 27-year-old elite distance runner from St. Louis. Before he operated on Feb. 26, 2010, Boland went to the medical literature to see if there was any other athlete who had that hamstring muscle removed, recovered and competed again.  He could not find one."

Following the surgery in February of 2010, Boland couldn't guarantee that Burla would be able to run, much less compete successfully. Burla, however, proved that she could overcome this setback. In November, she participated in the New York City Marathon for the first time. Her time was 2 hours 37 minutes 6 seconds, putting her in 19th place.  In the national half-marathon championship in January, she came in second.  And, Kolata goes on to say, "Burla has bigger things in mind. She has qualified for the Olympic marathon trials next January. She loves to run." 

For her part, Burla was happy to have her leg, and even happy that the cancer had started in her leg, where she couldn't disregard the initial pains.  Kolata quotes Burla saying "There was a fleeting moment when I was first diagnosed when I questioned, Why my leg? But the answer slapped me in the face instantaneously. Had the tumor not been in my leg, it would have been ignored and chances are the diagnosis would have been too late. Running saved my life."

"There was also a day in February when I had an epiphany," Burla added. "I had lived my life without regrets. I had loved with my whole heart, lived each day for all it was, done my best while doing the right thing, and I was at peace. I realized that by living without fear, I wasn't afraid of what the future may or may not hold. If my time was up, then I could leave this earth satisfied. If I was to live another day, then I would continue according to plan."

 

Looking to the future: Doctors aim to save fertility of children with cancer

Original story by Chris O'Meara, Associated Press

This article, written by Chris O'Meara of the Associated Press, discusses the challenges parents face in locating future fertility options for young children preparing for chemotherapy, radiation and other forms of cancer therapy known to impact reproductive organs.  Unlike young adults, who have the options of going to a sperm bank or having eggs and embryos frozen, children undergoing cancer treatment are often presented with no options to allow them to have children if treatment leaves them infertile. In many cases, patients and families aren't given the information they need before procedures that are destructive to the child's reproductive systems begins. Moreover, some studies designed to help even adult patients store sperm and eggs only accept the newly diagnosed.

This was the issue faced by the parents of 9-year old Dylan Hanlon, of Hollywood, Florida.  Dylan had already expressed his desire to have a large family when he grew up, before his diagnosis with Ewing's Sarcoma.  O'Meara writes that his mother remembers Dylan saying he wanted to have 10 children.  Christine Hanlon told O'Meara that it "broke my heart. … He might have lost an opportunity."

Unwilling to accept that infertility was inevitable for her son, Christine did her research and came upon the Orwig Laboratory in Pittsburgh, PA.  Headed by Dr Kyle Orwig, the Orwig Lab does research "on the biological activity and functional genetic characterization of male germline stem cells." O'Meara quotes Orwig, saying "There are viable options, and they are on the doorstep."  She goes on to note that "With childhood cancer survival reaching 80 percent, there's a growing need to find ways to preserve these youngsters' fertility - and patients like Dylan are on the front edge of research that's banking testicular cells and ovarian tissue to try."

Teresa Woodruff, of Woodruff Lab and Oncofertility Consortium at Northwestern University, expresses hope that by protecting the fertility of young children now, childhood cancer patients will have a chance to have the families they dream of, just like their healthy peers.  Of course, there's no way to be sure the process will work for all patients but, O'Meara points out, parents like Christine feel that they did the best they could.

Dylan joined Orwig's study, with the goal of storing his stem cells, which later in life would produce sperm.  The stored cells would be frozen and transplanted back into Dylan at a later date.  O'Meara describes the technique, saying "Testing the technique in boys requires biopsy-style removal of a small amount of testicular tissue. No one knows how many stem cells are floating among the millions of other cells frozen from that sample, or how many are necessary." 

Another physician involved with this work is Jill Ginsberg of Children's Hospital of Philadelphia.  According to O'Meara, a partner of Ginsberg is focusing on "multiplying stored stem cells so that many more can be injected back"   Luckily for Dylan (who joked with his mother "So Ma, I'll be a guinea pig?") Dylan's tissue was found to include stem cells. 

For girls, the procedure involves laparoscopic surgery in which strips of tissue are removed from their ovaries.  The concern with ovary tissue is not whether they will contain the desired cells, but how long those cells can remain frozen.  There is a risk that the frozen tissue could contain cancer cells as well.  O'Meara says in this regard "Woodruff is going the next step, researching ways to force those stored follicles to ripen into pure eggs in a lab dish."

O'Meara concludes, "However the different experiments pan out, Hanlon said more families should be told about them: 'Doctors should have this information, have it there to give to the parents. Let the parents decide.'"

V8N2 ESUN Copyright © 2011 Liddy Shriver Sarcoma Initiative.

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October 2010

13-year-old Roseville girl designs greeting cards, proceeds fund cancer research

Annina Hanlon, Roseville California teen and Osteosarcoma survivor, has taken lemons and made lemonade! Well, not lemonade, but greeting cards. Annina drew on the creative skills she honed during her many months of treatment for osteosarcoma to design artworks for a series of Special Occasion and Everyday greeting cards. She then made the cards available for sale via the children's fundraising website KidsAreStars.com to raise money for sarcoma research, and 45% of the proceeds from her cards go to none other than the Liddy Shriver Sarcoma Initiative!

Annina, now 13, was diagnosed last year with osteosarcoma of the thigh.  Since then, she's had 18 rounds of chemotherapy and is in remission from this rare bone cancer.  Osteosarcoma typically affects adolescents.  In Annina's case, she first knew something was wrong when her knee began to hurt badly.  As is common with sarcomas, she and her family initially thought the pain was sports-related or one of the normal aches and pains that growing children experience.

According to the Press Tribute, her doctor, Kent Jolly of Kaiser Roseville Medical Center said of the initial pain, "What made Annina's (pain) different is the persistence in the same area and continued to hurt it for a long period of time."   When the diagnosis was finally made, they were naturally shocked and dismayed.  Fortunately, the disease was localized, with no metastases to her lungs, and Amanda remained in good spirits. 

Drawing proved to be the best distraction for Annina while she was undergoing treatment.  "I really like (drawing) because it's a good way to express my feelings," Annina is quoted as saying. "I was never up to doing anything. I couldn't walk around without passing out."   Her favorite themes include peace symbols, flowers, animals (such as cats, dogs and birds) and landscapes.

Sena Christian of the Press Tribune reported that "Annina underwent six rounds of chemotherapy. Then she had her knee and half of her thighbone replaced with a titanium prosthesis as part of limb-salvage surgery. Annina underwent 12 more rounds of chemotherapy. During her frequent hospital stays — she spent 95 nights in the hospital over eight months of treatment — she would sit in bed and bend her leg to regain her flexibility and strengthen the muscles."  After treatment was completed, Dr Jolly was optimistic, saying, "Her chances of being cured are very good.  Annina is a great patient. She's a sweet young lady, very motivated to get better."

Now, along with her 12-inch-long scar from surgery, Annina has a new short haircut and is very happy that the pixie cut is back in style.  She's returned to school as an 8th grade student at Olympus Junior High School, with a few restrictions on her physical activities, but she takes it in stride.   Moreover, she's raised over $1,200 for cancer research so far!  Not only is she continuing to produce the cards to sell, she's also started designing T-shirts and spreading sarcoma awareness through her family's website.

We applaud Annina's efforts and her caring spirit, as she reaches out to support others affected by sarcoma.  Thank you, Annina!

Manitoban grinning after doctors bisect her to remove massive bone tumour and then put her back together

Through two pregnancies, Janis Ollson of Manitoba, Winnipeg, Canada, experienced severe back pain.  The pain was so intense, she was unable to work.  Her doctors were unable to help her, thinkng that the pain was related to her pregnancies.  However, her pain continued after her babies were born.  She endured the pain, until she went to see a neurologist who became concerned about her symptoms.  He was the first doctor to suspect there might be more to this pain than previously believed.

A biopsy was done and the diagnosis was chondrosarcoma, a rare cancer that is not treatable by chemotherapy or radiation.  Moreover, the tumor was so large it had spread to muscle tissue and bones in her midsection, including her pelvis and lower spine.  Doctors were at a loss, not as to how they could remove the cancer, but how to put her body back together after such a radical surgery.  According to the Winnipeg Free Press, "the Toronto specialist said he could remove the tumour but didn't know if she could be put back together. Without a lower spine, half her pelvis and a leg, there was nothing to attach her remaining healthy leg to."

Janis described her reaction, saying "I was in complete shock.  I felt like I was going to throw up."   At age 31 and with two small children, Janis wasn't ready to give up hope.  Her doctors consulted with the Mayo clinic in Rochester, MN. Mayo surgeon Dr Michael Yaszemski proposed a radical experimental surgery that had never been performed on a living human being.  This newly invented surgery was dubbed a "pogo stick rebuild".  Her good leg would be fused to her body using a bone from the amputated leg, creating a single, centered leg, hence the resemblance to the popular children's toy.

In an interview with ABC News, Dr Yaszemski described the need for this approach, saying "The tumor removal left no bony continuity between her torso and her remaining leg …. The novel part of the operation was to restore that … continuity using bone from the leg that we had removed." The work could not be done all at once.  Two surgeries were performed, a week apart.  The first entailed removal of the bone and the second to put her back together.

Today, Janis is active, getting around using whatever means she needs to for the situation, including wheelchair, walker, crutches and prosthetic devices.  She extends herself to benefit others by appearing in person to talk about the Terry Fox Run, a sarcoma fundraising event that began locally and has since become an international event.

Amanda Merrell, 8-year-old cancer survivor, to appear on Frosted Flakes box September 17, 2010

Put your hands together for Kellogg's, the makers of Frosted Flakes cereal!  In cooperation with the Children's Miracle Network, Kellogg's has created special boxes of Frosted Flakes cereal, featuring four children facing serious health problems.  In a statement posted on the charity's website, Shirley Rogers, Senior Vice President, Corporate Fundraising says:

"The children featured on the package are representative of the wide variety of ages and ailments seen every day at Children's Miracle Network hospitals across North America.  This fundraising campaign demonstrates both Food Lion's and Kellogg Company's commitment to children's health, and we are proud to partner with them in our efforts to save and improve the lives of the 17 million children treated annually at our hospitals."

Kellogg is donating a quarter to Children's Miracle Network for every box sold, with a goal of raising $100,000.  The specially packaged boxes will be sold at Bottom Dollar, Food Lion and Bloom grocery stores in the southeast. 

One of the children chosen to grace the package of Frosted Flakes is 8-year-old Amanda Merrell.  Amanda, who lives in Gaithersburg, Md., was diagnosed with Ewing's Sarcoma in 2004.  She was treated at Children's National Medical Center in Washington, DC.  Her left leg was amputated and she was fitted with a remarkable prosthesis that allows her to live life to the fullest.  The hospital website quotes Amanda saying, "I had cancer. Now, thanks to Children's National, I have a really cool robot leg that helps me walk.  Everyone in my class wishes they had a robot leg, too!"

This program can serve as an excellent model of programs retail stores can implement to support causes that benefit children with all manner of health challenges, including pediatric sarcomas.

V7N5 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.

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August 2010

The Team Sarcoma Everyday Heroes Winners

In July, the Liddy Shriver Sarcoma Initiative announced the winners of the Team Sarcoma Everyday Heroes Competition. Three winners were chosen out of more than 100 touching tributes submitted from 9 different countries. Because of the number of inspiring submissions, five additional prizes were awarded for honorable mentions.

1st Place Award: Doreen Kossove
$3,000 has been donated to leiomyosarcoma research in Doreen's honor.
Alison writes: "Doreen Kossove was multi-faceted, a scholar, scientist, mother, educator, and my dear friend. She encouraged people to advocate for themselves and provided thoughtful and accurate help online through the ACOR list and privately, extending the lives of hundreds of people."

2nd Place Award: Odile Espesset
$2,000 has been donated to synovial sarcoma research in Odile's honor.
Elodie writes: "After my diagnosis, my mom crossed the ocean and border control on her own and became our shopper, cook, cleaning lady, my 4-months-old son's baby-sitter, my driver and my nurse. She had to learn how to drive on American roads, how to read American directions, how to communicate without words...."

3rd Place Award: Logan Alexander Brasic
$1,000 has been donated to osteosarcoma research in Logan's honor.
Lori writes: "Throughout treatment and beyond, Logan has traded in his inability to play soccer with ways to enhance soccer skills of the children from our small rural area. Last year, he really turned a corner when, at our Team Sarcoma event, Logan proudly reclaimed his place in the net and played goalie once again!"

Honorable Mention: Kenji Matsumoto
$500 has been donated to Ewing's sarcoma research in Kenji's honor.

Honorable Mention: Precious Synamun Foster
$500 has been donated to angiosarcoma research in Precious' honor.

Honorable Mention: Leigh Webb
$500 has been donated to Ewing's sarcoma research in Leigh's honor.

Honorable Mention: Keaton Lee
$500 has been donated to osteosarcoma research in Keaton's honor.

Honorable Mention: Marina Symcox
$500 has been donated to GIST research in Marina's honor.

The Everyday Heroes Competition was created and coordinated by volunteers of the Liddy Shriver Sarcoma Initiative. We would like to thank everyone who participated, including all of the volunteers who helped to make this project such a success.

 

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Friends, family remember ex-Chaparral baseball player Michael Lio with fundraiser

The Arizona Republic

It was Michael Lio's kind of turnout Saturday night. Friends filled the spacious kitchen and front room of his parents' ranch-style home in northeast Phoenix. More friends were upstairs playing pool in the game room. His girlfriend, Samantha Cerny, greeted guests at the door.

Michael Lio wasn't there, but the former Chaparral High second baseman's spirit was. Guests bought Michael's Angels Strike Out Sarcoma T-shirts, black wristbands and other items in a fundraiser to fight the battle against Ewing's sarcoma that took Lio's life at age 22. It is a rare cancer that attacks the soft tissues and bones and claimed Lio on Oct. 29

His mother, Melanie Lio, said the goal was to raise $22,000 between that and Monday night's Diamondbacks-New York Mets game at Chase Field for the initial Strike Out Sarcoma Night. Funds go to Ewing's sarcoma research as part of the FJC/Liddy Shriver Sarcoma Initiative in memory of Michael Lio.

It was appropriate it came with the Mets in town. Mets rookie first baseman Ike Davis grew up playing sports, particularly baseball, with Lio. After Fall League games, he came to the hospital and spent the night during Lio's last day. Shortly after Davis was called up by Triple-A Buffalo early this season, Davis got behind an "I Like Ike" T-shirt promotion with proceeds going to Ewing's sarcoma research. That last October night, the hospice room was overflowing with past Chaparral teammates, including Davis.

"Everybody loved him," said Toni Dietz, whose son Spencer was one of Michael's closest friends growing up.

Lio was the scrappy kid who pulled everybody together for get-togethers at his home. He was the one making the calls to arrange a baseball game. He played the sport year-round. He was part of a national championship club team with Davis. As a sophomore, Lio's hit triggered the 12th-inning run in 2002 that beat Coronado for the first of the school's four consecutive state baseball championships.

"He was always going to be on top of the world, just like we were all back then," former Chaparral teammate Mike McDonald said. "He was one of the most fun-loving kids in our group. He was probably the biggest prankster, playing jokes, just having fun all of the time."

Tim Sherlock, who went on to play at Duke after graduating from Chaparral in 2005, was stunned to hear the news of his friend suffering from cancer last year.

"It's scary how something like that can happen," Sherlock said. "He was always a happy, cheerful guy."

After complaining about persistent pain in his neck behind his skull, Lio had an X-ray performed by a chiropractor. That's when the cancer was spotted. He traveled out of state to see a specialist. He had surgery, and the family never lost hope.

"Actually, he handled it better than all of us," Mario Lio, Michael's father, said. "He was unbelievably sane about the whole thing. He never said, 'Why me?' "

Getting behind the initiative has been therapeutic for the Lio family. Pictures and plaques from Michael's baseball days fill the game room. There is a framed photo of the 2002, 12-inning state championship score card. There are championship celebration pictures from three seasons. When the cancer spread to his liver, all they could do was bring Lio back to Phoenix and keep him comfortable in the final days of his 14-month battle.

"He never stopped, always going, 'Just throw me one more, dad, one more,' " Mario said. "He was a fierce competitor. He was a lucky kid. He was never sick in his life. And just like that. . . . "

 

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Superheroes Run a 5k

Waco Today

Eighteen-year-old Benjamin Moore says his little brother, Andrew, is a hero. Personally, I think both Moore boys would qualify for that title — Andrew for his battle against a sarcoma cancer, and Benjamin for planning a novel event to raise money for sarcoma research.

On July 17, the second annual Be A Superhero: Team Sarcoma 5K, which Benjamin began last year, will kick off at the Waco Suspension Bridge. The event will include a 5K run, a 5K walk, which both begin at 8:30 a.m., and a 1K fun run at 9:15 a.m. The fun run will be led by a cast of superheroes, and participants are encouraged to dress up as a hero, either of the super variety or a real-life hero, such as a firefighter, police officer, etc.

"When I watched my little brother bravely struggle through multiple surgeries and almost a full year of aggressive chemotherapy treatment, I realized that he was my hero," said Benjamin, who graduated from Midway High School in June. "By participating in the Team Sarcoma event, everyone can be a hero to those people who are struggling with this disease."

At the race, awards will be given to the top three male and female finishers in each age bracket of the 5K, as well as to the overall top three winners of the 5K. There also will be a costume contest for all the assembled superheroes. Participants will receive complimentary T-shirts and goodiebags.

The entrance fee for the 5K walk/run is $15 before July 1 and $20 afterward; the fun run fee is $12 before July 1 and $15 thereafter. Walk-up registration will begin at 7 a.m. the day of the race. To register or to get more information, visit www.team-sarcoma.net/2010-events/4714. In its inaugural year, the Team Sarcoma event had 350 participants and raised more than $10,000 for sarcoma research.

By the way, Benjamin also was overjoyed to report that 10-year-old Andrew is doing extremely well, was able to return to school and at his last checkup, had a clean bill of health. As for Benjamin, about a month after the race, he will be off to study at the University of Notre Dame.

This event was also featured in a live news cast at KWTX.com.

 

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Third annual Soccer Round the Clock event helps fight cancer

MLive.com

Logan Brasic never faced a shot as hard as osteosarcoma when he was the goalie of the Jackson Northwest soccer team.

But he's also never come up with as big a save as he has in fighting the aggressive bone cancer.

From noon Saturday to noon Sunday, the 23-year old Brasic and his mom, Lori, proved that families fight cancer together through love, and in their case soccer, with the third annual Soccer Round the Clock celebration.

More than 400 people signed up to play in 18 games, with a goal of raising $5,000 for metastatic pediatric osteosarcoma research to add to the $14,000 the event raised in 2008 and 2009.

While the highlight of the event was the first celebrity game — with the likes of former Michigan State athletes T.J. Duckett and Goran Suton and Food Network star Adrien Sharp on hand — each game was a proud moment for the Brasic family two years after Logan was told there is no evidence of the disease in his body.

Saturday's kickoff game was no exception, as Logan watched his 74-year old grandfather play goalie against a group of family members and high school friends.

His grandfather Barry Saltman said he had never played goalie in his life, but someone had to give it a shot. He was beaming after making a late save on someone less than a third his age.

"I kept saying I've got to make one stop, and the kid who kicked it was nice enough to not quite kick it hard enough to get through," he joked.

Each goal scored or save made was also a reminder of the money being raised. Each team paid a $250 registration fee, and there were many generous donations as well.

Ferris State University student Lauren Drayton got to know Logan a few years ago when she met one of his friends while at the school, and she had an envelope full of hope for the Brasics.

"This year I sent out letters to raise money, just from my family and friends, and I was able to get almost $1,000," she said. "The first time I met Logan, I already knew how extraordinary of a person he was just from what he was going through and how he was upbeat all the time. The more I get to know him the more I realize how awesome he is."

Brasic was in the familiar position of goaltender during the celebrity game Saturday, saying he "made sure T.J. Duckett was on his team so he didn't have to face a shot from him," but this event is not the only thing making him smile these days.

A year-and-a-half after having his left leg removed, the 2005 Jackson Northwest graduate is working full-time at LeMatic, while spending a lot of his time running free soccer clinics and finding ways to encourage others.

"The last year has been the kind of coming out of the darkness where I've become OK with being an amputee and just kind of become at peace with myself," he said. "It's given me a chance to look at my life and kind of move in the direction I want to again and cut my losses, I guess you could say, and move on."

Lori said she knows she "is damn lucky" to still have her son with her, but she knows the fight is a never-ending one.

"The last three years of my life I've walked on eggshells, wondering if he's going to (have no evidence of disease)," she said. "I wanted to do something for all of the other kids who fought the fight and made it through and knew they could go through it again and again and could end up dying."

V7N4 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.

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June 2010

Gonyea dedicates season to ailing sister

By Brandon Koch, Tonawanda News, Niagara Gazette

Ali Gonyea was a dedicated softball player before entering Niagara-Wheatfield High School in Sanborn, NY.  A couple of months before tryouts for what would be her first year of varsity-level play, her sister Olivia, was diagnosed with Ewing's Sarcoma.  Ali was able to maintain her focus and made the team, playing the third base position.  Now, Ali is dedicating her first season with the Niagara-Wheatfield Falcons to Olivia.

In spite of the intense competition, which was much fiercer than what she'd encountered while playing in the 8th grade, Ali has had an excellent season.  "Gonyea's success as a freshman hasn't been a surprise to head coach Eric Belter. He watched her play junior varsity as an eighth grader and knew right away she had a legitimate shot of coming in as a starter this season," says Brandon Koch of the Niagara Gazette. 

Ali's coach couldn't be happier.  Coach Belter is quoted, saying "I think she realizes to value all the different opportunities you get, to play a sport and do it at a high level".  He went on to say "She's a strong kid and to be able to play thorugh this type of situation, I think the team loves her and admires her for it".  He noted that Gonyea's performance has been steadily improving, and the team has been inspired by "the way the freshman carries herself on and off the field".

Gonyea finds that her participation in the aggressive sport helps her to cope with her sister's serious illness.  "It's definitely affected not only me, but my family, too", she says. "It has been hard, softball is a big help in getting my mind off it".

In aid of Olivia and the Gonyea family, a basket auction is being held on June 25 at St. Leo's Church, 2748 Military Road. For more information, contact Jamie DePetris at 297-4262 or Ernie Eodice at 297-9446.

 

Holston edges Lebanon in game played for good cause

By Josh Floyd, TriCities.com

It's a challenge for all high school coaches to get a look at the players on opposing teams before actually playing them.  When the coaches at Holston High School in Damascus, VA, met to plan their strategies during the preseason, they latched onto what Josh Floyd of the TriCities.com website called "an innovative, yet thoughtful idea."

They decided to hold a benefit game to raise funds for the Penny F Garrett Sarcoma Foundation.  Penny Garret had graduated from Holston, and become a friend to Lisa Blackburn, coach of the Holston Cavaliers.  She was diagnosed with leiomyosarcoma a year and a half ago. 

The benefit was named Strike-Out Cancer.  Floyd quotes Blackburn describing the event, "That was a perfect partnership for us. We've just been friends for a long time, and a lot of the girls know her – and love her. We're just really excited to be able to put today's proceeds towards her foundation."

Penny and her doctors, like many cancer patients and their caregivers, did not recognize the earliest signs of sarcoma.  Her doctor had diagnosed her with uterine fibroids which, while troublesome, are manageable and relatively harmless.  Then she began to put on weight and the shape of her stomach changed.  The next time she went to the doctor, she was scheduled for surgery the next day.  After the diagnosis, her doctor told her she needed a miracle.

In an interview with Mark Sage of swvatoday.com, Garrett said, "I'd never heard of it.  You hear of breast cancer and lung cancer. I didn't realize there are so many. Four in a million have leiomyosarcoma … A general oncologist might go through their entire career without seeing a sarcoma patient." With the help of her sister, Garrett found the help specialists she needed at the University of Texas MD Anderson Cancer Center.

Seventeen rounds of chemo and nine trips to Texas later, Garrett is cancer-free.  She knows it may come back and is prepared for the fight.  Sage quotes her saying, "You don't have to take that diagnosis that you need a miracle and go home and give up," she said. "I think as a patient you have to sometimes be an advocate for yourself and find the help you need."

Triathlon challenge for rare cancer teen

By Lewis Rudd, The Wokhingham Times

On weekend of May 15 and 16, 2010, Pippa Hatch of Wokingham, UK, participated in a triathlon to raise money for the Sarcoma Trust.  Pippa, 15, has a rare cancer called Paediatric Wild-Type Gastro Intestinal Stromal Tumour (GIST).  Last November, she had a large tumor removed from her stomach.  The surgery was performed at Oxford's John Radcliffe hospital.  She now has no evidence of disease but returns to the hospital for scans to detect recurrence.

She and her family and friends are grateful for the help given them by Sarcoma Trust during the course of Pippa's treatment.  Lewis Rudd of The Wokingham Times describes Sarcoma Trust, saying "The charity, which was launched in 2007, aims to promote and protect the physical and mental health of patients with bone and soft tissue sarcomas in the UK through the provision of information, support, education and practical advice."

The event was created by the Hatch family and other Woodley residents as a way of giving back to Sarcoma Trust.  Pippa's mother Leigh Hibberdine is quoted saying "It is not an official organized triathlon, but we have arranged for friends and family to take part in a cycle, run and swim – so it is as close to an official event as we can get it."

Also joining in the event are friends and family in South Africa and Australia, making the event international as well as local.   To learn more and sponsor Team GIST, visit www.justgiving.com/pippa-hatch.

 

Cancer silences effervescent Kiwi singing star

By Beck Vass, The New Zealand Herald

On May 23, 2010, Fans of the Kiwi (New Zealand) television show Gloss bid goodbye to singer Beverley Jean Morrison, also known as Beaver.  The songster of the popular 1980's show had battled leiomyosarcoma for seven years.  Born in Wellington, the star died at Mercy Hospice in Ponsonby at the age of 59.

Beginning her career in her 20's, "Beav" enjoyed singing a variety of types of music, including jazz, blues, soul and rock and roll.  Before joining Gloss, she was known for her work with actor and drummer Bruno Lawrence, founder of Blerta (Bruno Lawrence Electric Roadshow Travelling Apparition), travelling throughout New Zealand and on to London as well.

She is survived by her daughter Fritha Stalker.  Beck Vass of the New Zealand Herald quotes Ms Stalker, "Everyone who ever met her loved her."  Stalker continued, "She was just a very likeable person. Everyone was just so fond of her. She was so easy to like. She had that kind of child-like kind of quality that made everyone want to protect her and care for her."

Morrison's achievements were most remarkable considering her lifelong struggle with mental illness in the form of depression and agoraphobia (fear of open places).  Ms Stalker said that her mother found comfort in her music, "Despite all of those things it was a total joy for her to make music with the people who loved music the way she did."

Vass quotes a good friend of Ms Morrison remembering a gathering of family and friends that took place about two weeks before her death, saying, "She wasn't well but she had a great time. It was just fantastic to see her. She was still as effervescent as ever. The magic of Beaver, beyond her personality, was the fact that she was a wonderful singer. She had a fantastic voice, she just sounded good at whatever she sang. Whether she was singing an old jazz standard or whether she was singing some wailing rock song, she was very good at it."

Read more about The Voices and Faces of Sarcoma in this month's ESUN editorial.

V7N3 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.

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April 2010

Sarcoma amputee participates in Paralympics 2010

Skier Matt Hallat headed off to the Vancouver Olympics along with hundreds of other athletes, hoping to medal in 5 different skiing events. Unlike most other athletes at the games, however, Matt was there on one good leg, the other having been amputated as part of his treatment for Ewing's Sarcoma.

Both before and after the amputation, Matt was a sports lover.  With the help of prosthetics, Matt was able to participate in baseball, soccer, golf, hockey and mountain biking throughout his youth.  Once he tried skiing, however, he was hooked.  The Squamish Chief quotes Matt saying, "When I get up in the morning, go to work, the grocery store, and take on the normal day's tasks, I am disabled. But when I step into a ski, I am equal. I can ski with anybody."

In order to compete in standing events, Matt uses two outriggers. He is pictured on the Paralympic Games website skiing the downhill and in training using these devices.

Out of the five events in which he is competing, Matt says the slalom is his favorite. One of his best finishes was 7th place in Whistler's World Cup race last year. He credits his success to his ability to handle the pressure without losing heart.

"The toughest thing to do is just keep it simple and remember what gives you success and just stick to that because everything is just trying to pull you away from that," said Hallat. "Everything has to go right for me to have a chance at the podium, but obviously that's what I'm striving to do. My goal is to put forth my best possible performance and at the end of the day that's good enough for me and where ever that puts me, it puts me."

Matt's Events and Results
Paralympic Torch Relay
Men's Slalom
Men's Super-G Standing
Men's Super Combined Standing
Men's Downhill -Standing

To top it all off, Matt served as one of the torch-bearers for the ceremonies too! The Mayor of Squamish, Greg Garder, worked to put together a series of events to honor local athletes participating in the events, encouraging all to attend. "I'm told that they are of all the events Olympics and Paralympics, that the Paralympic competitions are the most inspiring and exciting," said Gardner.

The Vancouver 2010 Paralympic Winter Games emblem represents the harmony that exists between athlete, sport, and environment. A dynamic human form is created by the valley, mountains, and sun of the West Coast, and reflects the athletes' mountainous inner strength and personal transformation as they push themselves to new heights in the pursuit of excellence.

The Chief reports that after the Paralympic Games, Matt will return to his studies at Simon Fraser University. He is studying business administration studies, with the goal of combining his "university degree with a lifelong involvement in sports."

 

Nick Clarke and Barbara Want: Living Pain in the Limelight

Nick Clarke was the much-loved presenter of the current affairs radio show the "World At One" when he was diagnosed with epithelioid sarcoma in November 2005. In his job at the BBC Radio 4 program, he interacted daily with high profile people, including politicians. In his questions, he drew out his guests in a sensitive manner, hoping to elicit answers to sensitive questions of the day. Nick was known for his tact and his ability to maintain polite dialogue even as he delved into contentious issues, all while in the public eye. He was both well-respected and considered a genuinely nice guy, an admirable feat for someone in his profession.

Given his inquisitive nature and passion for bringing truth to light, it is not surprising that Nick would discuss his own illness with the same transparency he would be happy to find in his own guests. Over the course of his treatment, he delivered two addresses to "World At One" listeners that are now available via the radio show website, describing his experiences as they happened:

• Presenter Nick Clarke Describes his Battle With Cancer
• Losing a Leg to Cancer

Barbara Want, like Nick, had substantial media experience and a literary bent. She was a both journalist and television producer who had already co-authored the book Baby Secrets. Barbara and Nick were a dynamic couple, used to speaking their minds and working with others to present information, stories and events to the media.

In spite of the amputation and chemotherapy, Nick died only a year after his diagnosis, at age 58. In her book Why Not Me?, written after Nick's death, Barbara remembers that he, like so many other sarcoma patients, did not pay attention to small warning signs of disease. She recounts that Nick began having pain in the area of his buttocks:

"Sadly he ignored it for months until overwhelming discomfort finally propelled him to seek medical help. He was diagnosed with sarcoma, a cancer of the connective tissues. It was a rare but aggressive cancer that Nick named 'The Beast.' His amputation that went right up to the waist was successful in that for a few months he was 'technically' free of cancer."

Barbara was devastated by the amputation and later, by the loss of her husband. She went through a deep depression, becoming emotionally detached from life around her, and even from her children. In writing of her husband's battle with sarcoma, she gives full expression to the grief she felt, admitting bluntly that she had a very hard time accepting her husband's disfigurement. She became frustrated with the constant demands of his treatment and his dependence on her. "My struggles to accept Nick's new physical state and his limitations got the better of me," she writes. She goes on to recount how, after his death, she had difficulty taking on the role of single parent, disclosing with harsh candor her awareness that she took some of her anger out on the children during her lowest moments.

In the book, she says, "I understand now that grief takes away everything and you can feel nothing but a mix of anger and denial. Fortunately all that has now passed and we are very close." She describes her children's struggles with clinginess and anger. As time passed, she began to consider the ways in which the needs of small children who lose a loved one are very different than those of older children or adults. She found that the needs of this small group was not being met, that parents and educators often did not know how to deal with bereaved children. She discovered Cruse Bereavement Care (CBC), an organization that provides practical information for helping children in mourning. In partnership with CBC, Barbara visited junior schools with a bereavement counselor to talk to teachers and staff about handling the needs of these children.

Barbara shared her thoughts about death and grief with BBC Radio 4 in "I don't know what to say."

References:

• Why Not Me? by Barbara Want, published by Weidenfeld & Nicolson.
• BBC presenter Nick Clarke's widow tells their inspirational story of laughter, tears and love
• 'When they amputated his leg, he was a stranger to me': How BBC presenter Nick Clarke's widow struggled to cope with his cancer
• They hoped he was cured but the cancer cruelly returned: BBC presenter Nick Clarke's widow tells the heart-rending story of his final days
• Barbara Want: 'After my husband Nick Clarke died, I had no love for my boys'
  
  

Child with Sarcoma Evacuated to the US for Medical Care

When there are crises in foreign countries, such as the earthquake in Haiti, the US sends in medical support from the Navy and the Air Force. They set up Mobile Air Staging Facilities (MASF) where patients are treated and evaluated for the need to transport to medical facilities abroad. Patients come to the MASFs from local hospitals and U.S. Navy Ship Comfort. The primary mission of the Comfort is to provide support services for military operations. According to the US Navy website, "As a secondary mission, MEDTRE FAC COMFORT is capable of providing a full hospital service asset for use by other government agencies involved in the support of relief and humanitarian operations worldwide. "

In this capacity, a crew from Ramstein, Germany, the 86th Aeromedical Evacuation Squadron was sent to Haiti. Talking to Stars and Stripes, Master Sgt. Mark Corte describes the mission saying, "The air medical evacuation flights take Haitian patients to hospitals in Georgia and Florida and ill or injured U.S. military personnel to Womack Army Medical Center at Fort Bragg". In addition to earthquake victims, the unit also transports those found to have critical medical conditions and can't get the care they need in Haiti. Thus, US service members are lifesavers for people with cancer as well as traumatic injuries.

Medical crew director Maj. Pablo Snead said his team has transported several injured children and children with life-threatening diseases. Stars and Stripes quotes him saying "A child is harder to deal with [psychologically] than an injured soldier," he said. "We had a 6-year-old boy with a fracture that hadn't healed. They did an MRI scan and found a sarcoma (cancer)." He was sent to the US for treatment by sarcoma experts, where he would receive a level of care that isn't available at any hospital in Haiti. It is not uncommon for sarcoma patients to travel to see doctors at major sarcoma centers. Sarcoma is a rare cancer that is best evaluated by those who have seen many cases. Teams of doctors at these centers, including oncologists, radiologists, pathologists and surgeons, have experience with producing remissions and promising new therapies.

Unfortunately, as The Washington Post later reported, medical flights to Florida have been curtailed as hospitals fill up. Navy Capt. Kevin Aandahl explained, "We do medical evacuation, and we do it well, but we can't fly anyone without an accepting hospital on the other end."

An interesting sidebar to this story was their use of what Corte called the "pointy-talky," an interpretive tool that uses images to help people communicate. Corte describes the patient experience at an evacuation site, saying "They are injured, there's a language barrier and it's noisy." Using sets of cards with images of common items, foods, activities and facial expressions, he says, "People can point to it and get their message across."

Many of us are familiar with this type of communication tool, having been presented with the pain scale chart that uses cartoon facial expressions to describe one's current state. Children, in particular, may have trouble expressing themselves verbally when talking to nurses and doctors. It would be interesting to see how this innovative approach can be used towards helping kids with cancer get their ideas across to their caregivers.

References:

Germany-based unit still flying Haitians to U.S. hospitals. Story and photos by Seth Robson, Stars and Stripes Online Edition, Tuesday, March 2, 2010.

U.S. suspends Haitian medical flights as Florida hospitals run short of capacity. By Mary Beth Sheridan, Peter Slevin and Greg Jaffe. Washington Post. Sunday, January 31, 2010.

 

Teens hold Concert for the Cure

by Adriane Heine, Abington Journal

On Saturday night, March 27, Jermyn Drive in Clarks Summit, PA, was the place for music. Five local bands performed in a benefit concert to raise money to battle the cancer known as Sarcoma.

The event was organized by Justin Goreschak, Zach Graham, Eric Wasser and David Lange, all juniors at Abington Heights High School. The teens planned the event as part of their graduation project and in memory of Justin's aunt, who passed away from Sarcoma.

Mark Dobson, another Abington Heights junior, hosted the event. "My friends were having a problem finding a venue for the music festival," said Dobson. "I thought my yard would be perfect, so I asked my parents. They were all for it." The concert was held in the backyard of the Dobson home. More than 100 people gathered to enjoy the music.

Dobson and the event organizers went door to door in his neighborhood, informing the neighbors of their plans and obtaining their approval. Not one took issue with the concert, and most of them showed up to support the event.

The teens charged a $4 entry fee and sold Sarcoma wristbands. They also sold food, including hot dogs, hamburgers, chips, soda and water. All proceeds will go to benefit the Liddy Shriver Sarcoma Initiative.

Sarcoma is a cancer of the connective tissues and can arise anywhere in the body. It is rare in adults, representing only one percent of adult cancers, but 15 percent to 20 percent of childhood cancers.

The graduation project is an opportunity for each student at Abington Heights High School to demonstrate the knowledge and maturity they have obtained as they progress through their years there. It includes in-depth study of a topic and both oral and written presentations on their work.

The bands playing Saturday night included Captain John and the Explorers, Liquid Purple, DJ Spindl, Beyond This Life and Sparkle Motion.

"It was beautiful to see these kids who thought more about others than themselves," Mariluz Dobson, Mark's mother, said. "We may host another event this summer. They all behaved perfectly, had fun and raised money for a great cause."

 

Relay a celebration for cancer survivor

Nine years ago Lyn Johnson was diagnosed with sarcoma. The cancer was discovered in her leg and Mrs. Johnson had the lower half of her leg removed. At the same time as her diagnosis, Relay for Life was gearing up to be held for the first time.

"We were talking about putting a team in when we realized what it was all about. Then within 12 months I was a survivor myself so we started the team," she said.

A midwife, Mrs. Johnson's workmates formed the team Mersey Maidens. "Now that it has extended to include people of various parts of the hospital and family and friends, we are now called the Mersey Maidens Plus,'' she said. This will be the ninth year the team will participate in Relay For Life and it has raised more than $105,000 over the years.

"We have been lucky, people who might not be walking have given their support with fundraising," she said.

Mrs. Johnson said Relay For Life is a personal triumph every year. "For me personally it is another year I can tick off. I have done it right from the beginning with my grandchildren."

V7N2 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.

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February 2010

Gravely ill Todd County student achieves graduation goal

Mary Garrigan Journal staff | Posted: Thursday, December 24, 2009
© Copyright 2009, rapidcityjournal.com, 507 Main Street Rapid City, SD

Not long into his treatment for Ewing's Sarcoma, Jeremy Eagle knew that his cancer was no longer responding to treatment.  Jeremy had chemotherapy and radiation at Sioux Falls Sanford Children's Hospital in Sioux Falls, South Dakota.  In the Rapid City Journal, Mary Garrigan reports that young Jeremy put the poor prognosis aside and, in a show of determination to live his life fully, set his sights on fulfilling his dream of getting his high school diploma.

Encouraged by Sanford's Sheri Mortenson, in-hospital school teacher, and Michelle Ahnberg, R.N., pediatric oncology coordinator, Eagle diligently worked through his assignments.  His studies included his favorite subject, Math, in which he was learning algebra and geometry.  The staff at Todd County High School in the small town of Mission, South Dakota, inside the Rosebud Indian Reservation worked together with Mortenson to ensure that Eagle was on track to meet the school's graduation requirements.

On December 23, the Royal Balcony at Sanford Children's Hospital was the venue of Eagle's cap and gown graduation, complete with Todd County's school colors and a symphony playing "Pomp and Circumstances."  Eagle's royal blue and gold gown was donated by Josten's.  

Eagle is quoted in Garrigan's article saying "I wanted to graduate. I didn't want to be a dropout," later adding "You need to graduate to go on in life. I was always told if you don't get a diploma, you won't amount to anything."

The staff at Sanford are all very proud of Jeremy.  Mortenson said. "We are just so pleased and honored to be a part of Jeremy's life."

"He's worked so very hard in midst of being in pain, in the midst of hospitalizations and feeling nauseated. He's continued to plug away at school," said Ahnberg. "For most people, school graduation is a goal and we're so excited that we can give him the opportunity to reach that goal."

Following his graduation, Eagle returned to the Rosebud Indian Reservation to receive palliative care from the Rosebud Indian Health Service hospital.  According to Garrigan, Eagle has chosen to "manage his cancer with pain control, comfort care and the spiritual treatment of a medicine man back home on the Rosebud Indian Reservation."

 

Shawano's Buettner family has reason to celebrate

By Patti Zarling

In the December 2009 issue of ESUN, we relayed information on a study of cases in which women are diagnosed with sarcoma while pregnant.  Researchers found that rushing to deliver babies early exposes the infants to the many known risks associated with pre-term delivery and is not necessarily beneficial.  Premature babies often require long-term hospitalization and there may be long-term effects as well.  The study analyzed statistics for patients who chose to delay delivery.  With few exceptions, the delay was not found to impact the mother's prognosis.  The authors concluded that it is preferable to delay treatment until at least 35-37 weeks gestation rather than induce labor in order to start treatment. 

Patti Zarling of the Green Bay Press reports that this is what LoriLynn Krausert Buettner's doctors at Froedtert & The Medical College of Wisconsin Clinical Cancer Center recommended following the discovery of sarcoma in Buettner's axilla (armpit) when Buettner was 22 weeks pregnant.  She'd recently lost her mother to Cholangiosarcoma (bile duct cancer) and she is a nurse with oncology experience, so she understood the magnitude of the decisions she and her doctors had to make.  Isaac was carefully monitored by Buettner's doctors throughout the pregnancy.  During this time, Buettner understood that there was a chance that she wouldn't survive.  She struggled to prepare for both the best and the worst outcomes.  If all went well, she and her husband would have a new infant and their 2- year-old daughter Isabella to care for during treatment.  If she did not survive, she wanted her daughter to have a personal message from her.  So she wrote her a letter which she tucked away and continues to save.

Due on April 21, 2005, Isaac was born on February 28, 2005 in an operating room full with 40 hospital staff ready to see him off to the NICU (neonatal intensive care unit) and immediately remove Buettner's tumor.  After a 25-day stay in NICU, Isaac went home and then on to grow into a healthy, active boy.  Buettner's surgery was very successful, the tumor removed with wide margins.  She then underwent chemotherapy at St Vincent Hospital in Green Bay, WI.

According to Zarling, Buettner's treatment ended on September 12, 2005 and she continues to be cancer-free.   She quotes specialist in bone and connective tissue cancer Dr Donald Hackbarth, who led the treatment team saying, "Everything has gone extremely well ... Every time I see Lori and her little boy, I know how many years it's been."

 

Inspirational Wirral policeman prepares to hang up his hat after 30 years in the force

By Craig Manning

Police Sgt Mark Whale, of Wirral, UK, was doing a job he loved when he was diagnosed with osteosarcoma in 1998.  A member of the Bromborough Police Station, Whale had successfully worked his way up through the ranks and was working on patrolling neighborhood of Bromborough when the sarcoma was diagnosed.  As is the case with many sarcoma patients, the disease was discovered following an accident.  Craig Manning of wirralglobe.co.uk reports that Whale was investigating an incident at a nightclub when he tripped and hurt his ankle. 

Whale says of the event, "Despite the pain I dealt with the incident and the next day I went to the doctor to have my ankle checked out and I had an x-ray which revealed a shadow on my lower tibia. If that hadn't have happened the cancer wouldn't have come to light and it wouldn't have taken long to get into my bloodstream, which would have been fatal."

Treatment included chemotherapy and the amputation of Whale's lower leg.  This was a difficult decision for Whale, but ultimately saved his life.  The UK NHS supplied him with a prosthetic limb, which he used until the North West Police benevolent fund provided an even better dynamic carbon fibre prosthetic.

Following successful treatment, Whale not only got right back to work on the same policing team, he also became an advocate and counselor for other amputees.  According to Manning, the police with whom Whale worked were extremely supportive throughout Whale's treatment and recovery.  They provided constant encouragement as he adjusted to the prosthetic.  Sgt Whale received many awards during his 30-year career.  Manning reports that Whale was a recipient of the Tom Wright award "presented to officers who have fought serious illness, for his exceptional commitment and loyalty to Merseyside Police".  He received the Wirral Challenge Award for "outstanding and inspirational personal and professional achievement".  He also represented the Merseyside Police, which included meeting the Queen, at the Golden Jubilee celebrations.

Although Whale says that he'll miss his job greatly, he plans to take a long vacation before settling in to do some gardening, scuba diving, fishing and swimming.

 

SOPHIE…There's No Stopping Her!

Toward the end of June '05 one of Sophie Rumatz's caregivers felt a lump in her left leg on her upper thigh. One month later Sophie turned 4 months old and was diagnosed with Mesenchymal Chondrosarcoma (MCS), cancer of the cartilage.   MCS is very rare and does not have its own treatment protocol.  A chemotherapy regimen was devised but it failed to shrink Sophie's tumor. Life-saving amputation was the next, heart-wrenching step. It was decided that Sophie would have a procedure called the Van Ness Rotationplasty as an alternative to having her leg removed at the hip. This procedure removes the cancerous portion of the middle leg and reattaches the healthy lower portion of her leg to her hip socket with screws. The leg is rotated around so her knee becomes her hip and her ankle works as her knee. Confused? Well, take a look at this video.

Once this healed she was fitted for a prosthesis and in the next video, you can see her walking around the kitchen. Almost five years later Sophie is an active and healthy little girl who has become an inspiration to many, in and out of the sarcoma world. 

 

"Just Don't Fail"

Josh Sundquist became a ski racer against all odds. As a child, Sundquist regularly put a heating pad on his leg to ease the "growing pains." But at age 9, he discovered those weren't just growing pains. He was diagnosed with Ewing's sarcoma and doctors said he had a 50 percent chance of surviving. When chemotherapy failed to shrink the cancer in his leg, Sundquist faced having his leg amputated. Right before his surgery, Sundquist made a vow: "I will beat the cancer and I will learn how to run. I will be strong." As it turns out, Sundquist's amputation would prevent him from running but it did not stop him from skiing. With the help of special poles, he learned to ski on one leg. And with support from his church community, he accomplished his dream — competing in the Paralympics in Turin, Italy.  Now 25 and living in Washington D.C., Sundquist is not only surviving but thriving. Sundquist has written "Just Don't Fall," a poignant, funny memoir written from a child's perspective. Writing the book, Sundquist said, was his way of trying to find meaning in his experiences. "At the end of the day, we all want to see that the events in our lives are not a random series of events," he said. To perfect the childlike voice, he read a book about child psychology and made a list of words a kid would never say (instead of amputation, he used the phrase 'cut my leg off'). "It was a cool challenge," he said. "I kind of got the idea from the book 'The Curious Incident of the Dog in the Night-time.' It's told from the perspective of a 13- or 14-year-old kid who has autism. It gives you the perspective of being autistic. I just kind of tell about my life and share my story about having cancer and losing my leg and becoming a skier racer, with the idea of sharing a story about overcoming adversity."

 

Family who loses daughter finds way to give back

When 17-year-old Emily Field learned in 2008 that she had Ewing's Sarcoma, her parents, Tammy and Craig Field, had little inkling of how their lives would change. Emily had injured her back, but the back injury merely masked an aggressively growing cancer. Emily lost her fight with cancer on Nov. 22, 2008, but her parents were determined that her legacy would live on by helping other families in similar situations.

"Emily would see other children at Brenner [Children's Hospital] and ask, 'Why are they always by themselves?' or 'Why are they on the computer at night?'" recalled her mother. "I had to explain that many parents have to go back to their families or to their jobs. They can't stay up here every day and every hour." Emily was particularly affected by a grandmother who stayed with a fellow patient but could not afford to go out and get meals. She would ask for any leftovers that Emily or her mother did not want. Helping other families became a project that occupied Emily and Craig Field during the last weeks of her life. She wanted to ask people to send donations so that families could get gift cards for such basic essentials as gas, snacks or even parking fees.

The words "strength, courage and dignity" became the rallying cry for Emily's memory and the bedrock for the Emily's Kids Foundation established in her memory. "She showed us how to behave," Craig Field said.

In October, the Foundation officially got started with its first board meeting. Board members asked to serve are what Craig Field said were "Emily-approved" before the Foundation even began. Dr. Doug Ririe, an associate professor of pediatric anesthesiology at Wake Forest University Baptist Medical Center, worked with Emily during her hospital stays and serves on the board of directors. "It's a fact that the relatively simple things can make a big difference for these families," Ririe said. "Even if they have health insurance, they need so much." The foundation collects donations, which it turns into gift cards and parking passes. The cards are distributed to the physicians and clinics to distribute to families needing assistance. Need is based on the discretion of the medical team and the availability of the cards. Daily incidentals of having a child in the hospital with cancer add up to astronomical figures, Tammy and Craig Field said.

 

Student loses arm to cancer, but not drive to succeed

Mary Kate Hughes does not mind the phantom pain; it is more of an annoyance. Doctors amputated he right arm last spring in an effort to stop the spread of sarcoma. Since then, there have been a lot of adjustments for Hughes, a Woodland High School junior. "The cross-over move no longer works," the junior varsity basketball player says with a laugh. The art of dribbling a basketball from one hand to the other, then exploding past a defender toward the hoop is no longer a part of her game. But the game remains a very big part of this 17-year-old. "If I could play basketball, if I could adapt and still play it, if I could do that, I can do other things that are tough. I'm still me. I can still play."

Hughes' biggest fear coming into the season, when she tried out for the team, was that she was going to be given a pity spot on the roster. "I didn't want to be on the team because I'd been on the team before," she said, noting her previous two seasons with the program. "I wanted to earn it. I wanted to deserve it." In one game earlier this season, Hughes scored six points for the junior varsity Beavers. In another game, she had six steals. Recently in practice, she made 12 consecutive free throws. She loves playing defense, especially in the press, making steals and starting the fast break with a long pass for a layup. MaryKate was first diagnosed with synovial sarcoma in her right shoulder when she was 10 years old. "From what I remember, I was kind of shocked," she said. "We had heard of people getting cancer." It took nearly four months to get the diagnosis, and then it hit the family hard. "We knew it was an ugly cancer. It was unpredictable," Mary Kate's father, Mark Hughes said. Doctors advised limb salvage treatment. Surgery to rid MaryKate of the cancer left her right arm temporarily useless. The right-hander had to learn to use her left hand. By 2008, with the help of physical therapy, she had regained roughly 90 percent of the use of her right arm. Basketball, even after her first surgery when she was 10, never left the equation. There was always a spot for her on a team. By July 2008, before Mary Kate's sophomore year at Woodland, a follow-up scan revealed no tumors. The family thought she was all clear, but pain returned to the arm the following December. There were tough times," MaryKate said. "For me, the worst part was waiting for people to get back to you. The worst part was not knowing what was going to happen next."

"When it came back, it was a lot more aggressive than when she was 10," Julie said. "I wasn't really surprised that it did come back. It did not seem out of the question," Mary Kate said, adding that she just had a feeling it would return one day. Amputation was discussed seven years ago, as well. Now, it appeared to be the next step. "She didn't want to have a useless arm," her mother Julie recalled. "She was more interested in long-term survival instead of being freaked out about losing an arm."

A second opinion in Houston, Texas, home of the MD Anderson Cancer Center, came to the same conclusion: Amputation was the best strategy. Mary Kate would also have to go through two rounds of chemotherapy prior to the surgery. She spent the rest of January playing basketball. For two games, she was allowed to dress — and play — for the varsity, to play alongside her sister, Jessica. Mary Kate had plenty of time to think of life without an arm. She did not bother with the negative, though. "I kind of just took each day and was glad I had it for then," she said. "I was happy for the time I did have it." Mary Kate and her parents flew back to Houston for the surgery, scheduled for April 2. But at the last minute — Mary Kate was already prepped for surgery — there was a delay and another possible setback. A scan found a spot on her chest wall. The doctor wanted to coordinate schedules with a thoracic surgeon to perform a procedure during the same time of the amputation. Surgery was rescheduled for April 8. But the mysterious spot on the chest wall turned out to be non-cancerous, probably some scar tissue, Julie said. MaryKate's arm and shoulder were gone.

"She never cried, the whole hospital stay," Julie said. There were moments when MaryKate would think about what she was missing. If she tried to do something with the arm that was no longer there, it would hit her that "it's not coming back." Then she would snap back to reality. "It usually doesn't last long," she said. "I look at everything that I still have, and that helps me get through that." Soon, she was preparing for her next challenge: Getting back on the basketball court. She attended a ball-handling camp, the only player there learning how to dribble only left-handed. "The bigger kids would look, but then they would look away because they did not know what to say," Mary Kate said. "Little kids have no problem. They just ask, 'Where's your arm?'" In the past nine months, Mary Kate has learned that the best way to make everyone feel comfortable is to make sure they know she is comfortable. "Can you give me a hand?" is one of her favorite ice-breakers. Mary Kate was feeling better, and the latest scans showed no signs of cancer. It was time to get on with her life. And that meant basketball.

"The first day of tryouts, I was a little nervous," she said. Her teammates also were apprehensive. "The first day or two, it was, 'Don't take it from the one-armed girl.' They didn't want to be the bully girls who stole it from the one-armed girl," Mary Kate said. "Now, it's like, 'Get her.' " Still, Julie Hughes was worried her daughter was taking on too much of a challenge. She even called Woodland varsity coach Glen Flanagan. "Do I need to funnel her in another direction?" she asked the coach. "He said, 'She's doing great. She's not only deserving a spot, she's playing great.'" Flanagan confirmed that reaction. "I saw just another player who was working hard, being aggressive, taking it to the hole," he said. "She wouldn't go to her right, but the rest of our JV won't go left." He also appreciated her humor. "We were doing lay-up drills, left-handed, and then I told them to switch," Flanagan recalled. "She said, 'Coach, can I shoot left-handed?' She broke the ice that first day. Everyone just broke out laughing." Still, Mary Kate was not exactly sure of her ability. After all, she only knew the potential she had with two arms. She knew she was not performing as well as she did in previous seasons, with a full body. Flanagan had to make it clear to Mary Kate that she was good enough. The coach did not promise how many minutes she would play, but she was a member of the program.  "After he told me that, and I knew he actually meant it, I knew I had earned.

 

Stephen C. Miner - a Santa Claus in looks and in spirit

At the wake, there were black Santa Claus boots filled with candy canes; a wide Santa Claus belt buckle; dozens of "Dear Santa" letters; and a red velvet hat trimmed with white fur. They belonged to Santa Steve, who for more than a decade was Santa Claus to thousands of children. Stephen Miner passed away from sarcoma on January 6th. He appeared each Christmas season at the local Bass Pro Shop. He also had been Santa at private homes, parties and fundraisers. 

His wife, Carol Miner, often stood at his side as Mrs. Claus, helping children who were shy about visiting with the man in the red suit. "We worried how it would affect the children if they heard he was sick," she said. "We didn't want them to be afraid for Santa Claus." This year, some 50 children wrote letters to Santa Steve asking what they really wanted was for him to get better. The letters made him laugh and cry, said Carol. "They really touched him."

His older brother Terry Miner said about his brother, "He was fun," he said. "A really decent person who had fun and enjoyed life."

The Miners' Kansas wedding in 2008 carried a Hawaiian theme. The memory still makes Carol giggle as she looks through the photos, where Stephen seems very much like Santa Claus at the beach. He was Santa no matter how he dressed. His family tells the story that last summer he was at the mall when he saw three children giving their mother a difficult time. "He walked over to them and told them he was checking his list," said Kent Harrington, his brother-in-law. "Steve was a great storyteller — along with being a good cook, especially his chocolate chip cookies."

Miner was revered by his fellow Santas, where a sort of brotherhood exists. When Santa Steve got sick, four area Santas stepped in to work his gigs, donating their salaries to him. "Steve was so loved," said John Scheuch. "Children don't really see the suit or the boots or the belt. They see the heart. …They loved Steve."
Carol said her husband was the best partner any human could have. "He was," she said, "my man of steel and velvet."

 

Tributes pour in for beloved singer-songwriter Kate McGarrigle

Musicians, artists, and the medical communities paid tribute On January 19th to beloved singer-songwriter Kate McGarrigle, who died of clear cell sarcoma the day before. The acclaimed folksinger recorded a series of critically praised albums with her sister Anna between 1976 and 2005. Their compositions have been recorded by such artists as Linda Ronstadt, Emmylou Harris, Billy Bragg and Anne Sofie von Otter with Elvis Costello.

"People who are artists have a great advantage in that their works can survive them," Dane Lanken, Anna McGarrigle's husband, said. "Kate and Anna made an extraordinary collection of records over 30 years and, like all great art, they improve."

Lanken described his sister-in-law as a complex person. "You got a full package with Kate," he said. "It was always interesting and often challenging and compelling, but I remember a lot of fun with Anna and Kate over the years."

McGarrigle's, son Rufus Wainwright, paid tribute to his mother in a message on his website Tuesday. "As I was saying to her sister Anna last night while sitting by her body after the struggle had ceased, there is never enough time and she, my amazing mother with whom everyone fell in love, went out there and bloody did it. I will miss you mother, my sweet and valiant explorer," he wrote.

"I never saw anyone enjoy life as much as she did," said guitarist Michel Pepin, who met the McGarrigle sisters in 1989, and worked and toured with them throughout the rest of their career as a duo. Pepin recalled McGarrigle as a voracious reader who was curious by nature and highly knowledgeable on many subjects. He also praised her creativity and eagerness to take risks with musicians. "She was always trying to find a way to make things different," he said. "She might suggest that we all play instruments we were less comfortable with to create a fragility, a sense of urgency to a song."

Violinist Joel Zifkin, who played with the McGarrigles in the early 1980s and accompanied them in concert until their final public appearance Dec. 9 at London's Royal Albert Hall — their annual Christmas show — lauded McGarrigles' musicianship and songwriting, particularly a final composition, Proserpina, which was not recorded, but can be viewed live from the Royal Albert Hall show on YouTube. "I've never heard anything better," Zifkin said. "I'd rank that with anybody's music." Zifkin also described her as fascinating and fascinated.

Singer Penny Lang said she met McGarrigle in Montreal when they were both under 20. She remembered a "young, vibrant human being. She had a great laugh and a devilish character in her own way. "When she sat down at the piano, it was always magical. It was so alive. It was as if the music came out of her arms and her fingers," Lang said.

Dr. Roger Tabah, a surgical oncologist at the McGill University Health Centre, was part of the team of doctors treating McGarrigle, who established the Kate McGarrigle Fund in partnership with the MUHC and the Cedars Cancer Institute. McGarrigle was honored at the institute's Lance Armstrong fundraiser in September. Proceeds from the McGarrigles' recent Royal Albert Hall show went to the foundation, as did the money from the 2008 show at New York City's Carnegie Hall. Tabah attended the concert, McGarrigle's final public performance. The fundraising initiative, Tabah said, was "typical of Kate, in her low-key, but thoughtful way. Even though she was very sick, she managed to put on a fantastic show."

Tabah paid tribute to McGarrigle's "courage and her dignity, above all. Never once did she feel sorry for herself. Never once did she ask 'Why me?' Her concerns were really her family and the well-being of those around her," he said.

V7N1 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.

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December 2009

Celebrating Jordan's life

Jordan Paganelli was diagnosed with Alveolar Rhabdomyosarcoma (ARMS) stage IV on January 11, 2008. Young Jordan was 17 when he passed away 22 months and 9 days later, on November 9, 2009. 

Baynet quotes Jordan's father saying of his son, "He was the very definition of grace, courage, and strength under pressure. He was the purest, most magnificent embodiment of selflessness and love that I have ever witnessed. His calm and humble strength radiated positive energy and love on everyone around him." Regarding the end of life decisions his son made, Jordan's father says, "In the end, despite the knowledge and unavoidable reality that he was dying, he chose to live his final days by celebrating with his family and friends, soothing our fears, and giving us personal items to remember him. It is and was the supreme privilege of my life to call myself his dad."

In accordance with Jordan's wishes that his remembrance not be a sad one, the family, with the support of Jordan's school and the community, held a Life Celebration Rally.  Baynet has posted Video of the Celebration held at the Leonardtown High School Football Stadium.  There, hundreds gathered to share memories and celebrate Jordan's life the way he wanted them to.

Jordan's treatment included the ARST0432 chemotherapy protocol and 12 weeks of radiation (7 body/torso, 5 head).  The five year survival rate for ARMS is low – 20%.  The family used a Caringbridge website to keep family and friends updated during Jordan's treatment and to post their thoughts and feelings leading up to and following his death. 

• Learn more about Rhabdomyosarcoma in the Sarcoma Learning Center.

 

Teen's Sarcoma Gives Her Perspective

Julia Janes can't remember a specific game when she began to feel pain in her lower left. She was on the Oak Forest High School girls' soccer team and just assumed she had been kicked at some point. What caused the pain didn't matter at the time. The then 15-year-old was being called up to the varsity squad for a regional playoff game and she was determined to play.  Janes was also an honors student and played flute in the school's marching band.

A doctor diagnosed the injury as a deep bone bruise just before the regional playoff game. But after the season ended the pain was getting worse. In July a pediatric orthopedic surgeon ordered an MRI, and Janes was diagnosed with Ewing's sarcoma. Julia and her family felt she was lucky though because the cancer was localized to her tibia.

Doctors moved quickly to treat her. First she was put on a seven-treatment course of chemotherapy to kill as much of the cancerous growth on her tibia as possible. Then she had surgery. Doctors could not save her tibia, so she had a complete knee replacement and part of her tibia replaced by a metal rod. The good news the family received was that the tumor removed from her leg was completely dead, when 80 percent of it killed would have been extremely fortunate. Janes will go on another seven-treatment course of chemotherapy to eradicate any stray cancer cells that may have lingered.

The surgery has very likely ended her soccer career. But her illness has given Janes a new perspective. "I learned to appreciate things more, you know, the little things that other people take for granted. It's changed my outlook as far as what's important," she said. Now Janes never takes simple things for granted such as walking her dog or taking a shower. And she has a long road of physical therapy to endure, along with her second course of chemotherapy, before she can walk again.

But the family is buoyed by the good prognosis doctors have given her and by the unsolicited support they've received from the community, friends and family. Mary Beth Sexton, principal at Arbor Park Middle School where Janes attended, helped organize a fundraiser at the school for the family last week to help them with mounting medical bills. Members of the marching band at Oak Forest High School came to her hospital room at Hope Children's Hospital in Oak Lawn to play for her during Homecoming week since she couldn't attend. Janes' father Jeff, a teacher at Andrew High School, said an acquaintance heard about his daughter's illness and just walked up to him and offered a check. "This entire community is an incredible community. Obviously family, but friends, neighbors, my community at Andrew, they have just pulled together to support someone like I never realized could happen. We thank everyone for everything they've done for our family," he said.
Janes has realized this illness will restrict her from certain things for the rest of her life. But she says she has plenty of interests and activities to keep her busy. She's choosing to focus on what she will do in the future rather than what she can't.

• Learn more about Ewing's sarcoma in the Sarcoma Learning Center.

 

After Beating Sarcoma, Girl Continues Backpack Effort

Tatum Parker will head back to her third-grade classroom in a few weeks. She hopes to return to normalcy since being diagnosed with Ewing's sarcoma, just before age 6. Except for attending the first day of school this year, she hasn't been to Spring Mill Elementary since last fall, when cancer returned in her right lung. She's been tutored at home. But now Tatum, age 9, reports, "I'm cancer-free finally."

Her health challenges have made her a more mature and compassionate young girl, said her mother. Along with six other Riley Hospital for Children patients, Tatum was recently honored as a Riley Champion for the nonprofit organization Tatum's Bags of Fun she started under the auspices of the Colorado-based Gabby Krause Foundation. She and her parents have made and distributed more than 300 backpacks filled with games and activities to children at Riley and Peyton Manning Children's Hospital at St. Vincent. Recently, they've gotten corporate and individual donors to help with the costs. "It was sad because a ton of kids (in the hospital) don't have their parents with them and have nothing to do," said Tatum. And she hopes to continue giving out backpacks again soon.

 

Climbing Over Cancer

When he was 13, Sean Swarner was diagnosed with advanced stage IV Hodgkin's lymphoma and given three months to live. He went into remission at the age of 14 only to be diagnosed with Askin's sarcoma, two years later. After removing a golf-ball sized tumor on the side of his lung, doctors gave him just 14 days to live. "All I thought of was what I went through the first time and how I didn't want to go through it again," Swarner said. "I only had two choices, though, one of which was fighting for my life — and guess what I chose?"

More than 20 years later, the 35-year-old cancer survivor has gone on to climb Mount Everest as well as the tallest peak on each continent, completed the Ironman Championship, and wrote a book. When he's not breaking records, he visits schools and hospitals to share his inspirational story.

Swarner recently spent a November afternoon telling his story to students at Newburyport High School and visited fellow climbers at Metro Rock as a guest of Alliance Oncology at the Newburyport Cancer Center, which invited Swarner to town as part of its grand opening yesterday. Officials with the Newburyport Medical Center felt Swarner had a message that could resonate with young people, whether or not they had ever been touched by cancer.

At an age where most teenagers are stressed about finding dates to school dances, Swarner was being told to write a will, and driving 90 minutes to chemotherapy and radiation treatments. "I was 13 going on 40," Swarner told students. "It was then that I understood the true meaning of life, and that I need to try to squeeze as much out of life as possible."

Swarner realized that he wanted to do something monumental to inspire other cancer patients. And what better way than climb the tallest mountain in the world? "The people going through treatment are the real climbers in life," Swarner said. "If they can fight for their lives, I can put up with some wind."

Students listened as Swarner spoke of his journey up and down the 30,000-foot mountain, which he documented in his book "Keep Climbing." He showed photographs and spoke about living in temperatures of minus-60 degrees for days on end, facing snowstorms with up to 120 mph winds with only one fully functioning lung, seeing a friend fatally tumble down the mountain, and what kept him going, despite all the times he thought about turning back. "I had gone so high that I could see the curvature of the horizon," Swarner said. "On my right was a sunset with the most beautiful pinks, reds, blues and purples, and the stars were at eye level on my left. I realized: I'm actually going to make it to the top of the world." On May 16, 2002, at the age of 27, Swarner became the first cancer survivor to reach Mount Everest's summit. "Every single person that's ever been touched by cancer was there with me when I reached the summit," Swarner said.

He has since gone on to climb the "Seven Summits," the highest mountain on each continent, including Africa's Mount Kilimanjaro, which he now climbs every summer as a fundraiser for the CancerClimber Association, which he and his brother Seth founded in 2001. After having completed the 2008 Ford Ironman World Championship in October, Swarner has his sights set on climbing in New Zealand and Indonesia, as well as trekking to the North and South poles. Along his journeys, Swarner visits hospitals, schools and other organizations to give hope to others affected by the disease.

"We should not worry about dying — it's going to happen; we should worry about living life to the fullest," Swarner told students. "The only person holding you back is yourself." Swarner told students that everyone has mountains they have to climb in life, and that true motivation has to come from within. "He has such an inspirational story," senior Jack Barry said. "I've learned that you shouldn't hold back — if you want something bad enough, you can get it."

 

Woman Spurs Cancer Fundraising Effort

When her younger sister was diagnosed with Ewing's sarcoma, Emily Enright got a sense of what it's like to have someone so young and so close to be diagnosed with cancer. "It turned out to be a misdiagnosis, and she really just had an infection that mimicked the cancer, but there was a solid month that I thought we were going to lose my sister," recalled Enright. "I know what that fear is like, and it's unreal. You could never imagine it unless you live it, and I know we were lucky." Despite the misdiagnosis, Enright was so moved by the experience that she wanted to continue to help those affected by cancer, especially youths. So when she heard of a 4-year-old cancer patient — a little girl named Alex Scott — who launched a lemonade stand to raise money to help find a cure for all children with cancer, Enright started a local effort to support the cause. Since her first lemonade stand, Alex's Lemonade Stand Foundation has evolved into a national fundraising movement with thousands of volunteers across the country carrying on her legacy of hope. To date, the registered charity has raised more than $25 million toward fulfilling Alex's dream of finding a cure, funding over 100 research projects nationally.

"When I heard Alex's story and how she inspired an entire nation to fight childhood cancer with a lemonade stand, I knew I had to be a part of her mission," Enright said. "I wanted to give all of the 13,000 kids in our country diagnosed each year a fighting chance, and The Lemon Lounge is my small way of doing that." Based in Thousand Oaks, California, the Lemon Lounge officially launched on Sept. 12 and has raised more than $1,300 that will directly benefit the foundation. "I wanted to start a local group because I noticed how few people knew about Alex's Lemonade Stand in our area, and this is my way of bringing Alex's Lemonade Stand to them," said Enright, who launched the local cause with her friends and family.

"I want to show people, especially young people, that it takes a lot of effort and persistence to get an important message across to a large group of people, but it isn't impossible," she said. "You always hear that it only takes one person to start something big, and I want this to be big. I have made it my mission to make sure Alex's message of hope is heard far and wide so that Alex's dream of finding a cure for childhood cancer will soon become a reality."

===============

Young Boy's Arm Bone Replaced Is Medical First

Four-year-old Mark Blinder is now throwing and catching footballs.  It is hard to imagine that just a few months ago Mark was barely able move because he felt so sick from chemotherapy. And now there is no indication that, as Mark says, his right arm is "special." Mark, who lives in Palo Alto, California, was diagnosed last year with Ewing's sarcoma that had spread throughout his entire upper arm bone. He could have undergone radiation, which would have prevented his arm from growing properly, or have the arm amputated. Instead, his parents chose an alternative approach — replacing his entire bone with a prosthesis that can be extended to grow along with him.

Doctors who treated Mark at Lucile Packard Children's Hospital say they believe it's the first time someone so young has had an entire upper arm bone replaced with a prosthesis. It's rare for a 3-year-old to develop a cancer like Mark's, and it's also uncommon for it to impact the whole bone, said his orthopedic surgeon, Dr. Lawrence Rinsky. "They don't make the parts for anybody that small, they've just never been made before," Rinsky said.

After chemotherapy, to eliminate the cancer completely, Mark's parents had to choose between radiation, amputation or a prosthesis. After many hours of discussion and research, they decided to opt for the untried surgery. "We decided, if there is a chance to save his arm, we'll save his arm," said his mother, Alla Ostrovskaya.

Doctors then worked with Indiana-based manufacturer Biomet to design the artificial bone. Rinsky remembered debating with the company's engineers in an effort to find the right balance between strength and size. "It has to be small enough to fit in, and sturdy enough to last for hopefully a lifetime, and it has to be elongating," Rinsky said.

The doctors had to remove his cancerous bone without touching it, carving it out within a layer of soft tissue to avoid spreading cancerous cells. Since the prosthesis was replacing an entire bone, doctors also had to find a way to sew it to soft tissue. Ostrovskaya remembered anxiously walking around Stanford Shopping Center for hours, getting occasional updates from the doctors. Finally, Rinsky called and said they should come back to the hospital, where he told them that everything went fine. After several months of chemotherapy, it appears the cancer is gone. As he grows, Mark will have a few minor surgeries so doctors can lengthen his artificial bone with a twist of a screwdriver. Mark still goes to physical therapy once a week. He can't lift his arm above his shoulder, and likely won't be able to write with his right hand. His artificial bone can only be extended so far, and his right arm will always be a bit shorter than the other. But he can run and play, and loves soccer and swimming, his parents said. "I think it was the right decision, but it was a difficult decision," said his father, Gene Blinder. "He's almost back to himself," Ostrovskaya said.

 

Women To Run Marathon To Honor Girl With Sarcoma

Twelve-year-old Kennedy Pepper wonders if she will have hair when she is old enough to attend the prom. The student lost her hair during chemotherapy to treat her Ewing's sarcoma. The cancer was found in her right thigh in 2008 during an exam and X-rays for leg pain. She has completed chemotherapy but is still under observation. Doctors had to remove part of the bone and replace it with a cadaver bone.

Her church family at Lindsay Lane Baptist saw her in the hospital, undergoing treatments, and coming to services on crutches. They grieved with her over the loss of her hair and rejoiced with her when it started growing back. "My daughter is her friend, and I think about the things my daughter can still do that Kennedy can't," said the church's pre-school director, Tammy Fleming. "Kennedy has a trampoline, but the doctors said she can't jump or put pressure like that on her leg. She'll never be able to use it again."

Despite these struggles, Kennedy remains a sweet and courageous girl. Her attitude has prompted Fleming and others at the church to compete in the annual St. Jude marathon through downtown Memphis and the St. Jude Children's Research Hospital campus. Fleming, 43, Kennedy's mother Joan Pepper, 42, and the church's assistant pre-school director Amanda Tedford, 31, will run the 13.1-mile, half marathon course. None of them has competed in a marathon before. They have been training since September to get into shape.

"I could barely run two miles when we started," Tedford said. "Now I'm up to 10 miles." Church member Christy Anderson, 41, is an experienced runner and will run the 26.2-mile course, along with church member Theresa Hagood, 42. About 10 members will do the 5K run.  "I am so proud that we are blessed with so many people at Lindsay Lane who are willing to give of themselves for others," said Minister of Education Sonny Schofield. " Our Sunday school motto is, 'It is all for Jesus, and it is all about others.' The members of this group are living examples of that motto."

The runners are willing to overcome the aches and pains to because St. Jude's treated Kennedy and will treat any child, regardless of whether the parents can pay. The marathon is expected to raise $2.5 million to continue the hospital's efforts. "It is awesome what they do," Fleming said. "They will pay for a patient and a family member to have lodging and food. No one is turned away." Tedford said Kennedy has remained strong during her ordeal, and their minor injuries from training can't compare to her experiences. "It has been amazing to watch Kennedy during this," Tedford said. "It has been both heartbreaking and inspiring in the same heartbeat."

 

Wanted: Front Bumper, Trunk Gasket - And Prayers

Tyler Shipman, 18 years old, loves restoring his 1986 yellow-and-black Pontiac Fiero. Tyler, "a total Fiero-head" and senior at Frazee High School, began experiencing severe back pain last summer. In early October, he was diagnosed with Synovial Sarcoma. After receiving two rounds of chemotherapy in Fargo, N.D., Tyler is home now, on hospice, with his parents, Jay and Daneele, and siblings, 10-year-old brother Carter, and 8-year-old sister Cassidy. He also has a 21-year-old half-sister, Tiffany.

After receiving the diagnosis, Tyler panicked about burdening them with his car-restoration project. On Oct. 29, he posted a plea on the popular Pennock's Fiero Forum website, under the heading "Got cancer now and looking for help. Hey guys, I have an 86 Fiero GT that I've been slowly fixing up ... and I'm just trying to find some way to get it restored before I pass. I love this car."

The first person to respond was far from Frazee, Minnesota. He was Sgt. Andrew Weigle, of Pennsylvania, serving in Iraq with an assault helicopter battalion. "Dude, I am sorry to hear about your situation. And I would have the same feeling about my Fiero ... I am going to have some time off when I get back home from this place in January. I MIGHT be able to convince the wife for a road trip to help you out for a weekend ... make a list of parts you need."

Others jumped in, with money, parts and prayers. "I am an auto mechanic and own a Fiero, so I know my way around cars," wrote one. "I have a nice Alpine CDA-9851 unit (MP3, Motorized Tilt Face and whatnot) to put in ...," wrote another. "I hope and pray for the best for you dude," wrote a third. A plan took shape. Fiero-heads in Minnesota, California, Florida and Texas would collect all the necessary parts, then gather in Frazee, and restore Tyler's car to mint condition. One of them was Chris Kliewer; Tyler's story touched him deeply. "I saw all these people willing to reach out and no one really knew how to do that," Kliewer said. He volunteered to handle Paypal transactions, which are now close to $1,500. Kliewer also started making calls to local businesses. The Detroit Lakes Tires Plus offered to install performance brakes. Local motels slashed their prices. Dave and Karen Gray, owner of Frazee Auto Body and Glass, covered the cost of painting the formerly white car yellow with black accents. Tyler felt good enough recently to come to the shop and pick out the paint chips himself, Karen said. "We're parents, too," Karen said. "If something like this were to happen to one of our children, we would find comfort in the well-wishes of people we didn't know well. It hits home and it hits pretty hard."

The car now sports new interior panels, a keyless entry, new leather seats, tinted windows and a rare original trunk gasket. "Somebody got their hands on the last two [gaskets] and is donating one," Kliewer said. A "Fiero guy" from Iowa is bringing up two newly built headlight motors for reliability down the road, he added. The "reveal" is scheduled for November 22nd at the Frazee High School garage.

Mother Daneele, 38, said the effort has been "mind-boggling. None of these guys has ever met Tyler, except for online. As many bad things as you hear about the Internet, it's also a really great way of having a bigger community than just what you live in physically." She laughs, admitting that she doesn't know a thing about cars, but is glad the focus on rebuilding Tyler's third Fiero is making her son happy. Her focus is to keep life as normal as possible for her family. "We have good days and bad days, but every day we just have to keep stepping forward," said Daneele, "There's no way for us to control what's going on around us. We try to ignore cancer as much as we can." They eat supper together, watch TV, play video games, attend band concerts and wrestling meets, "all those normal things." Last week, Tyler went with his dad to a gunsmith and sports store, using his walker. The outpouring has buoyed him. "I've been doing a lot more in the last week than in the last month before that," Tyler said. "I've been feeling a little stronger. I can walk around a lot easier."

Dad Jay, 40, who owns a tree service, is off-season now, allowing him to spend more time at home. He and Tyler, Daneele said, "are super close." Today, father and son are set to take a bittersweet spin. But Tyler feels only gratitude. "A lot of great people out there are helping me, doing all sorts of stuff for me," Tyler said. "It's just awesome."

• Learn more about Synovial Sarcoma in the Sarcoma Learning Center.

 

Boy Fighting Sarcoma Is On Every Player's Mind And Helmet

When the Lake Highlands High School football team takes the field for the playoff game, every helmet will be emblazoned with a special sticker. And whether Will Morgan gets to root in person will be a game day decision. Will Morgan was diagnosed with Ewing's sarcoma a couple of months ago. The 11 year old's sore leg was initially chalked up to the start of his youth-league football season. But the sarcoma diagnosis was only the start of a story that goes beyond one 11-year-old Dallas boy dealing with a serious illness. As friends, family and teachers explain, Will is a popular kid for reasons that go beyond fad or clique.

So people wanted to do something visible to show their support. The stickers that the high school team is wearing are one example. So are T-shirts that belong to every sixth-grader and staff member at Merriman Park. The messages – "Will Power" on the school T-shirts, "Will to Win" on the stickers – reflect the love and support for Will and his family. "It would be really easy to get down and think of all the things that Will is missing," said his mom, Renee Long. "But we've looked for the little blessings."

The stickers were spun up by Keith Beasley, father of one of Will's best friends and the owner of a local design company. The boys were on the same football team in the Spring Valley Athletic Association when doctors discovered Will's cancer. Beasley initially came up with stickers for his boy's team. But in the days that followed, the demand kept him heading back to the printing company. Most teams in the league are wearing them. The football team at Forest Meadow Junior High asked if Beasley could print them in purple – that school's color.

"I told them I could do it in any color that they want," Beasley said. He's also designed a T-shirt with the "Will to Win" motto. And then the high school came calling. Several members of the varsity squad live near Will, and the team's coach, Scott Smith, had heard about the stickers. A week before last week's playoff game, the captains and the coach agreed they wanted to do something for Will.

Last Friday, the doctors cleared Will to attend a playoff game. He was an honorary co-captain and watched from the sideline as the Wildcats came from behind to beat North Garland, 49-28. "Winning that game was huge for us," Smith said. "But having Will there put it in perspective that there are things out there that are more important than what we're doing as a football team."

If all goes as planned, Will is scheduled for seven months of chemo, plus reconstructive surgery on the leg. He's matter-of-fact about his illness. He says he's learned a bit about hospital stays. "I thought it would be a little adventure," he said. He and his family say the support from the community has made a big difference, whether it's stickers worn by strangers or an offer of a meal from a longtime friend. "That is God's way of coming down on earth and putting his arms around us," Long said.

Regardless of whether Will can attend the next playoff game, Will is taking a longer view. Asked whether he thought having cancer would change him, Will did not hesitate. "Now that I've seen so many people who want to help me," he said, "I'm going to want to help others."

 

V6N6 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.

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October 2009

Back in the Game After Cancer

Emily and Ashley were both avid athletes when they were diagnosed with osteosarcoma.  Emily Land played soccer while Ashley was a cheerleader and gymnast.  Both had tumors in their left legs and both were treated at St Jude Research Hospital in Memphis, TN.  And both opted to use prosthetic devices to replace the diseased bone that would have to be removed.  A key difference between them was that Emily, at 24, had finished growing.  Ashley, however, was expected to continue to grow for at least another 5 years, attaining about another 5 inches in height.  Her surgery would require removal of the growth plate at the base of her knee.  So, while surgeons selected the Guardian, a permanent implant that could not expand, for Emily, Ashley was given the Repiphysis.

The Repiphysis is designed especially for pediatric patients who are still growing.  The mechanism by which the Repiphysis expands does not require additional surgery or create excessive scarring.  Made of titanium and plastic, according to the manufacturer Wright medical, the device "consists of two tubes with a spring mechanism, which is compressed by a locking device. It weighs about the same as the patient´s bone and ranges in size depending on the patient. When it comes time for the implant to grow with the patient, a magnetic field is delivered outside of the body, allowing the device to expand. Once the electromagnetic field is removed the expansion of the device is halted. These growth spurts can continue for as long as they are needed and last about 20 seconds." (Wright Medical, Oncology Expandable Prosthetics)

The Guardian Limb Salvage System that Emily received doesn't have the moving parts of the Repiphysis, but it does need to graft to the bones around it.  In Emily's case, the graft did not occur following the first surgery.  She experienced pain and lack of muscle control, and walked with a limp.  Despite these issues, she travelled to Hawaii with friends, got married and honeymooned at Disney World.  When the problems did not resolve, she underwent a second surgery in which the implant was replaced and secured.  This time, the graft took and only 6 weeks later, Emily was pain-free and walking without a limp. 

Both young women have returned to their lives, changed but not beaten, by their experiences.  Ashley returned to cheerleading and normal teen-age activities like learning to drive.  Her mother does note that Ashley's priorities are different from those of other teens, saying "When Ashley's friends call to complain about boys, she tells them it's not a big deal in the scheme of things."  For her part, Emily has had to adjust to the loss of stamina and muscle caused by her time off the soccer field.  She hasn't let it get her down, however, graduating summa cum laude and now expecting her first child. 

 

Soccer player at Colgate University

Kiki Koroshetz was a 20 year-old three-time All-FCIAC soccer player at Colgate University when she was diagnosed with Ewing's sarcoma.   What had begun as a pain in her side began to impact her breathing.  Diagnosis was a long and difficult process that included a trip to the emergency room and many tests.  Once the diagnosis was known, the family wasted no time in getting her into treatment.  "At least the waiting was over," said Suzanne Koroshetz, Kiki's mother. "Once we had a name we were able to move forward. We were lucky that we had brilliant, brilliant doctors at Sloan-Kettering (Cancer Center in New York). That's all we can do as parents. Everything else was in the doctors' hands and in the good Lord's hands."

For her part, Kiki was most interested in returning to school, and soccer, as soon as she could.   In an interview with The Hour of Norwalk, CT, Kiki said, "Here I was 20 years-old and in college. I just wanted to do what everyone else was doing. I wanted to go on with my daily life. I didn't want to be away from my friends at college. It was an inconvenience more than anything." 

Kiki's determination to get through her treatment inspired her family.  In the interview with The Hour, Kiki's mother describes how her daughter motivated the entire family.  "There were days where I don't know how we put one foot in front of the other.  But it was her. It was Kiki. She was the one who would tell the rest of us, 'Okay, this is what we've got to do today and where we got to go.' She helped us get through it."

Although doctors had told her she should expect to miss a year of school, Kiki was able to go back during the second semester, in time to play soccer in the spring.  And she did it while maintaining a 3.91 GPA. Kiki returned to soccer this year, getting back into shape and landing the position of co-captain. 

In a show of support and appreciation for her efforts, the Colgate University athletic department created the Kiki Koroshetz Award in April 2009. 

According to the department website, "This special award will be present on occasion by the Colgate head coaches to an individual who has exemplified unwavering strength and remarkable courage.  The award is a symbol of thanks to the tremendous inspiration in which Kiki has shown and given to those around her and the entire Colgate community."

Kiki provides an excellent example for young adults with sarcomas who worry that their lives will never be the same and that they won't be able to achieve the goals they had before they were diagnosed.  While their lives will be inevitably altered by the cancer experience, Kiki's case shows that it is possible to get back into the game and realize your goals in spite of the setbacks of sarcoma treatment.

 

Sarcoma doesn't keep this girl from attending class

Nine-year-old Tiana Bishop is a determined young lady. When she was diagnosed three months ago with Rhabdomysarcoma she got depressed -- until she was able to figure out a way to be a normal fourth-grader. Her teacher and the other children in her elementary school decided to take the classroom to Tiana. The school, with funds from the community and parent groups, arranged for a laptop and web-cam that connected Tiana from her hospital room to her class. Taking part in school is now helping take Tiana away from the stress of fighting cancer. Watch the video in the above link for Tiana's inspiring story.

 

Kickin in for devoted mom, cancer victim

Mother of four, Sue Kordas was 42 years old and actively involved in her children's schools and volleyball clubs when she was diagnosed with synovial sarcoma.  This aggressive and incurable disease began in her chest, on her lung.  Before treatment began, she was told she had about two years to live. However, Sue battled the cancer with surgery, chemotherapy, radiation and actively participation in clinical trials.  In order to best meet the challenge of her illness, Kordas consulted with specialists at Memorial Sloan-Kettering Cancer Center in New York.  While nothing could be done to cure her, the treatments and clinical trials did extend her life and gave her the opportunity to contribute to research for the benefit of future generations.

She survived four years after her diagnosis, gaining an extra two years of life, which she used to continue her active involvement in her community.  Just as she had been active in the St Bernadette parish in Florida, before moving to Chicago, she threw herself into the life of St Cajetan parish in Chicago's Morgan Park and the Marist High School community.   Here sister-in-law Judy Mulchrone remembers her involvement with her children's volleyball team, saying "She coached volleyball at St. Bernadette.  Everybody absolutely loved her. She was someone you liked to talk to."

She leaves behind her husband, three daughters and a son.  Since here death, the family has participated in benefits to not only pay off the bills and provide for her children, but also to raise money for research.    According to Mulchone, the family would like to start a foundation, something Sue had wished for before her death.   Monetary donations can be made to the Private Bank, 3052 W. 111th St., Chicago, IL 60655.

 

Hoole parents say thank you to the Countess of Chester for the care they gave their daughter

Often after losing a child to pediatric cancers, parents withdraw and may choose not to talk about their experience for some time.  This is not the case for the parents of Libby O'Brien, who lost her battle with Ewing's Sarcoma on August 15.  David and Pippa O'Brien of Chester, England, have come forward to praise the staff of Countess of Chester Hospital for the excellent care and kindness shown the family during Libby's illness.  Libby was diagnosed at 16 months of age and passed away 16 months later, at 2 years and 8 months.  Because of the staff's efforts to get to know the family and allowing Libby to follow them around, her father says "She saw the staff as her friends and so they became part of her family and part of our family.  She trusted them and would allow them to examine her and care for her".  Her mother added "Libby was never, never scared of going to hospital, and never told us she didn't want to go and that made it so much easier".  Not only were staff there for the family while Libby was in active treatment, they helped make sure she didn't suffer when efforts to treat her illness were stopped.  Her parents are very grateful for that.  David O'Brien says of his daughter's last days that "Her strength of character, stoicism and joie de vivre remained constant and true and itw as always these traits of hers that were our support and are now our inspiration."  Thanks to the Countess of Chester Hospital for making such a difference in the lives of this family.

 

Teen's cancer battle inspires high school fundraisers

Before he lost his four-year battle with sarcoma in July, Jordan Michael Reiss found comfort at Easton Area High School in Palmer Township, Pennsylvania. His mother, Tina Mimlitsch, said Reiss loved his friends and his classes at the school, and even as the cancer grew worse and worse, he wanted to take his final exams last semester. When he couldn't, Reiss insisted on coming back to the school one last time to say goodbye to his teachers. "He loved this school," Mimlitsch said of her son, who died on July 8th at age 16. "This was his escape."

In late September, members of the school community memorialized Reiss with two events aimed at raising money to battle childhood cancer in his honor. Students from the Fellowship for Christian Athletes, of which Reiss was a member, collected money at a football game through an Alex's Lemonade fundraiser they called Juice for Jordan. And outside the school, the high school student council and the Angel 34 Foundation sold frozen Icee drinks to the students to raise money to battle childhood cancer.

Janelle Spadoni, student council vice president and friend of Reiss for five years, organized the Icee sales because she wanted to honor him with an event appropriate for his temperament, which she described as friendly, outgoing and fun.

"He was a joy to have in class with you," Spadoni said. "He was always happy and everybody knew him. He was a good kid." "This is our birthday gift to him," she said. Reiss would have turned 17 on September 26th.

 

Fulfilling his promise

In 1999, Keith Munemitsu first completed the 32-mile voyage from Catalina Island to the Manhattan Beach Pier in honor of his best friend Suzanne Leider.  Leider was suffering from sarcoma. The two were born days apart and met at Newport Harbor High School, where they had lockers next to one another. Munemitsu was 32 years old in 1999 and was not an experienced paddleboarder. But he had surfed all of his life and was used to being in the water. He started the race with a 102-degree fever and finished more than 10 hours later, in what he believes to be one of the worst times ever posted in the Catalina Classic.

That year, he raised $40,000 for Hoag Memorial Hospital Presbyterian, and the successful experience led him to found his own foundation to support cancer research along with Leider. Later that year, they started the Sarcoma Alliance. With little planning, Munemitsu quit his job as an account executive at a sportswear company and dedicated all of his time to his new endeavor. "There was no thought process," he said. "I thought, 'My job sucks, I hate what I do, and my friend is really sick and probably going to die.'"

Leider's sarcoma didn't go away, and while she lay on her deathbed in 2002, Munemitsu promised her that he would make a total of 10 Catalina crossings in her honor. He doesn't know exactly why he picked that particular feat, but it was important to him at the time to reassure Leider that he would continue to fight cancer.

On Aug. 30, Munemitsu will have attempted his 10th crossing, which is something that only a few people have accomplished in the history of the race. "If there is one promise I'm going to fulfill, it's this one. I'm going to get 10. I feel that this is a moral imperative for me," Munemitsu said.

After Leider died, Munemitsu resigned his post at the Sarcoma Alliance. He still believes in its mission, but says 90% of the joy of running the foundation was doing it with his friend. Three years later, though, he started Team DUKE, another foundation that helps athletes raise money for cancer through their different sports. The organization is affiliated with the John Wayne Cancer Institute, and the money it raises goes into fellowships for scientists doing cancer research as well as programs to get cancer patients outdoors. He took on the project with John Wayne's youngest son, Ethan. The foundation is now 4 years old, and boasts a list of athletes who take on all sorts of challenges in the name of raising funds for cancer research.

Munemitsu still carries a picture of Leider in the pocket of his wetsuit as he paddles, and he hopes he will be able to lift a trophy commemorating his accomplishment and the fulfillment of his promise to her.

 

Goalie Shuts Out Sarcoma

Just two short years ago, Jon Boehm was stricken with liposarcoma. Through hard work and dedication, Jon is back and a paragon for Cougar athletics at Corcoran High School in Syracuse, NY. One look on the field at Jon's leadership is evidence of that. Boehm is a goalie for the soccer and lacrosse teams at Corcoran.  In fact, in just over a year and a half of varsity soccer, Jon has ten shutouts, a fantastic statistic that has led the Cougars to a 7-2 record for the season. His stellar play, coupled with his ability to overcome adversity, has inspired his team to its great year so far. Jon is just a junior, so that number of ten shutouts is sure to grow and will surely attract the attention from college recruiters.  Jon's 'never give up' attitude is an inspiration to all sarcoma patients.  

 

V6N5 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.

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August 2009

Superheroes come in all Sizes

Benjamin Moore's little brother, Andrew, has been battling sarcoma for a while. Ben is a high schooler in Waco, TX, and he decided to plan an event to honor Andrew. He thought of an event that would involve superheros, because he thinks of Andrew as his hero.

The "Be a Superhero: Team Sarcoma 5k" took place on July 18th, the first day of International Sarcoma Awareness Week. More than 350 people raced alongside friendly superheros to raise money for sarcoma research. Ben and his incredible team of heroes raised $9,700 for sarcoma research grants through the Liddy Shriver Sarcoma Initiative.

Ben writes: "The most emotional part of the race for me was the actual start. More than 250 people taking off in unison to eradicate that which has affected my family so much over the last year was an awe-inspiring sight.

"The 1k fun run was a blast. Lead by Superman, the Flash, Captain America, and Batman, the race was fun and energetic. At first leading the race, the superheroes turned around after finishing and helped motivate every one who hadn't finished. No one could help but smile; the race had an unbelievable atmosphere of hope. Even the weather, which had been breaking 100 degrees all week, was on our side, with temperature barely breaking 90.

"Overall, the event was a huge success. We loved planning it, and seeing everything and everyone come together was an experience we will never forget."

While Ben sees Andrew as his hero, all of Ben's efforts prove him to be a hero as well.

 

Sarcoma Patient Cycles Strong

Todd Andrews isn't your average bike tour participant. Though he enjoyed cycling with his family when he was young, he hasn't been able to do much it lately. For the past five years, Todd has undergone treatment for osteosarcoma (surgeries, chemotherapies and radiation), and earlier this year, he discovered that he would need further treatment for tumors in his lungs.

So when Todd found out that he won a sponsorship to attend the Team Sarcoma Bike Tour in July, he was excited. And he was also challenged: he needed to train for a full week of cycling. Todd and his wife, Karen, started a weblog to chronicle their adventures, and Todd's father, Scott, committed to cycling with them.

In early June, Todd wrote: "Our training for the bike tour continues, but unfortunately, it's not going as well as we hoped. I would not recommend trying to train for a bike tour after 5 years of cancer treatment while currently on chemo 3/4 of every month!"

Still, "Team Andrews" soldiered on, and their friends and families generously donated $3,000 to sarcoma research in support of their endeavors. During training, Todd biked about 12 miles at a time, so he was unsure about how the tour would go. He knew that some days the route would be between 20-40 miles.

When Team Andrews arrived in Maryland to start the bike tour, Karen wrote: "I can't express what a cool event this is already or how lucky we feel to be part of it. Since July 18-24 is International Sarcoma Awareness Week, there are sarcoma activities going on this week all over the world. But this is the big "core team" event, and it's a very special atmosphere. Our group is made up of about 45 people, representing 10 countries. Getting to know people who have first-hand experience with what we've been going through the past five years is … well, it's hard to put into words, actually … but it's incredible and it creates an instant closeness despite the fact that most of us are total strangers."

By the end of the week, Team Andrews had created hundreds of memories and cycled more than 100 miles. Within a few days of this amazing accomplishment, Todd and Karen were meeting with doctors about the next steps to take to deal with his lung tumors. Even then, Todd took a few moments to write some final thoughts about his Team Sarcoma experience:

"What I found is that these people weren't there to talk about their cancer (although it was a convenient ice breaker); instead like me, they were there to make sure that other people wouldn't have to deal with the things they were forced to go through by helping raise money and awareness of sarcomas. That really blew me away. I don't know why it should have or what exactly I was expecting, but what I found is that they just want to live as much life as I do and have a great time and a ton of laughs doing it. So very cool. And fun. So much fun. I know I will be in touch with many of those incredible people for a long, long time."

 

Linebacker Battling His Toughest Opponent: Sarcoma

On May 14, Sister Barbara Anne, a 75-year-old Franciscan nun, sat by her computer inside the Our Lady of Angels convent in Mishawaka, Indiana, and read the day's news. One article was about Boston College linebacker Mark Herzlich, the ACC's Defensive Player of the Year who had been diagnosed with Ewing's Sarcoma in his left leg. She had never heard of him, but his battle tugged at her. "God put Mark in my heart so I would write to him," she said.
That afternoon she composed a note in flowing script on a piece of flowered stationery:

Dear Mark,
You are young and have so many dreams to be experienced. I've lived for three quarters of a century and am grateful for all the blessings I've been given during my lifetime. I still have a few unrealized dreams that I want to see come to fruition. So let's fight this cancer together...

Twenty-four hours a day nuns in the infirmary and convent pray for Herzlich. His name appears among the sick on a list of perpetual adoration for which the nuns offer up intentions. Herzlich has never spoken to any of the 40 women or had time yet to respond to them, but Barbara Anne has been his most frequent mailer. "We see the return address and know warm wishes and striking penmanship await," Herzlich's mother, Barbara said.

Hope continues to arrive from unexpected sources. Notre Dame coach Charlie Weis lit a candle for Herzlich in the school's grotto and began exchanging text messages with him. Red Sox CEO and President Larry Lucchino recounted his personal struggles with non-Hodgkin's lymphoma (1985) and prostate cancer (1999) on Sox letterhead. Seven-time Tour de France champion and testicular cancer survivor Lance Armstrong's invitation to join Livestrong hangs on the refrigerator. "Be as aggressive about your treatment as you are on the field," he writes.

Inspiration fuels his recovery. Two months into an aggressive chemotherapy plan, Herzlich has yet to endure an episode of nausea, but his strength is sapped during treatment cycles. The decision to undergo radiation for the malignant tumor, which started in his bone and spread to surrounding soft tissue, instead of surgery two weeks ago was the most significant. "I can't even feel the tumor unless I really search for it," Herzlich said, rubbing his thigh and noting that the tumor has shrunk from the tissue.

Change is more pronounced above the skin. To preempt the cancer killing his hair cells, he shaved his curly locks. He has no facial growth for the first time since sophomore year of high school and the follicles on his legs have stayed the same length since chemo commenced in mid-May. "I really don't want to lose my eyebrows," he told BC quarterback and roommate Codi Boek.

He maintains his playing weight around 240 pounds, swims regularly and lifts weights with his upper body. He errs toward caution when outdoors. Since picking up golf he drives tee shots some 240 yards, occasionally off the course. His shots are all arms, though, as he's hesitant to exert himself fully. The cancer gives him a five-percent higher chance of breaking his leg. "If it breaks, the cancer spreads," he said.

For now, only goodwill has metastasized. Meats have been mailed from Chicago, chili came from Cincinnati and Kentucky ice cream came packed in dry ice. A chain of mothers will deliver meals through August, when Herzlich reports to school as a student-assistant coach and resumes classes. "I never even knew you could mail ice cream," said his mother.

There, on the kitchen counter, Sister Barbara Anne's notes (always written on a different color of paper) rest in their own pile. One day after a fawn was born outside her window, she wrote Herzlich about how full of life the newborn looked and enclosed a photograph in the envelope. Another time she related details of her physical rehabilitation with five-pound weights. "When I feel like I'm tired, I think of how many more Mark would do if you were here."

Her friendship comes with a caveat. Though she holds no official affiliation with the University of Notre Dame, she can see the Golden Dome from her convent rooftop and has been known to be tardy for prayers when football games run late. In the first letter, she wrote:

As you well know, Boston College has been our nemesis. So on Oct. 24 I will be rooting for Notre Dame -- but not nearly as hard as I will be rooting for you!
Love and prayers,

Sister Barbara Anne

 

Fighting Cancer Becomes Mother's Mission

Ever since Chris Fleming was diagnosed with infantile fibro sarcoma at the age of three months, his mother, Amanda, has been on a mission of her own in hopes other parents won't hear the phrase, "Your child has cancer." Now 6 years old, Chris is in remission. His mother said he is living a normal life, looking to start first grade this fall.

Fleming is in her second year as chair of the Relay For Life of Reynoldsburg-Whitehall, Ohio which took place in July. Her involvement in Relay For Life began when her son was diagnosed with cancer. She said her work with Relay is how she helps others touched by cancer. "It's an awesome thing to do and now, after being a chair, it amazes me how many people it affects," Fleming said of the disease. "I don't have words for it, but the whole reason I do it is I want there to come a day when no mother has to hear the words, 'your child has cancer,'" she said.

Beside Chris, Fleming said her mother, grandfather, two grandmothers, and her father in-law have experienced cancer and all, thankfully, have survived it.
Soon after Chris' surgery to remove a tumor on his left foot, he went through four months of chemotherapy. About a month after his first birthday, Chris had more surgery and doctors said his cancer was in remission. Fleming said Chris has had regular checkups, first one every three months, then every six months, and now once a year.

"He's been in picture-perfect health and he reached his five-year mark, which is a very good sign," she said. "After his chemos and surgeries, the doctors gave me a 75-percent chance that his cancer would never return." Fleming said Chris is now living a normal life. He is currently taking gymnastics lessons and likes to play soccer.

 

School Honors Mates Claimed by Sarcoma

Students from Australia's St Bernard's and St Columba's colleges raised money and honored the memory of two lost sons. Students organized "Skittles for Sarcoma" - a games day held at St Bernard's last week to raise money for sarcoma research. St Bernard's student Xavier Krikori, 17, and ex-pupil Brendan Boyle, 20, both died from the rare cancer this year. Student and friend of Xavier, Matt , 17, said his classmates were "doing it a bit tough this year" but were dedicated to "getting the message out there". St Bernard's staff member Brendan Douglas said the games day was not only about raising money but being together as a group. "They were both very popular boys. When you lose great boys and friends like these, there's a real sense of helplessness," Mr. Douglas said. Xavier's dad, Robert Krikori, said the community's support had been "overwhelming".

 

Inspired to Ride Again

Jothy Rosenberg lost his right leg to osteogenic sarcoma when he was 16. He learned to walk and even ski again, but when he was 19, the cancer returned in his lung, something his doctor told him no one had ever survived. Rosenberg had two-fifths of his lungs removed and began a grueling course of chemotherapy, then an emerging treatment. Today Rosenberg is a 53-year-old father of three, a computer science PhD who has founded six technology companies, and an accomplished endurance athlete.

This August, the Newton, Massachusetts resident completed his seventh Pan-Massachusetts Challenge, the annual two-day bike ride that raises money for the Dana-Farber Cancer Institute through the Jimmy Fund. About 5,000 riders are participating on one of seven routes - the original, 190-mile Sturbridge-to-Provincetown course and six shorter alternatives - and have raised a minimum of $1,000 to $4,200 each, depending on the route.

"The ride is going great,'' said Rosenberg, during a phone interview yesterday at a Lakeville water stop. "I was a little nervous this year, because [the weather in] June was so bad we lost at least five or six training rides, and for me I have one leg, so I have to work twice as hard.''

Rosenberg is accustomed to providing what he calls "accidental inspiration'' to fellow riders. Whenever he looks back, he said, he notices others quickening their pace after being passed by a one-legged cyclist.

During the ride he offered encouragement to Brian Pender, a 13-year-old cancer survivor and one of the official Pedal Partners for the ride, children treated at Dana-Farber who greet and inspire participants. At 8, Brian was diagnosed with Ewing's sarcoma and had a bone tumor that required surgery to remove part of his tibia. Although he has been cancer-free since late 2005, his leg remained frail and fragile. When a metal brace inside his leg broke last fall, Brian and his parents decided together to amputate the leg below his knee. With a prosthetic device, Brian can run, ride his bike, and play soccer.

"It's a lot easier than it was before,'' Brian said. "I kind of forgot how much fun it was to play, because I couldn't play for so long.'' The Penders, who raised money on the North Shore for the Pan-Mass Challenge, said they were eager to give back to the Jimmy Fund and Dana-Farber, where Brian continues to receive regular checkups.

PMC organizers thought he would appreciate meeting Rosenberg, who has talked and written about the lack of role models and support he had as a young amputee in the early 1970s. "I got him to smile,'' Rosenberg said. "It sounds like he's into sports. He's very fortunate that he got a below-knee amputation, because a knee makes an enormous difference, so he's going to do really well.''

Brian sounded impressed by Rosenberg, who invented a snowshoe system for amputees, writes a blog called "Who Says I Can't?", and has a forthcoming book with the same title. "It's pretty cool that he could do all that stuff with one leg,'' Brian said.

This year's PMC is the 30th, and the previous 29 raised nearly $240 million. Although the number of riders is down slightly from last year (5,241), their individual donors for the year to date (156,000 people) are setting a record pace, said Billy Starr, the founder and executive director.

V6N4 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.

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June 2009

Cedar Park cancer survivor runs for a future

In September, 2007, Kirk Offel found out what Malignant Fibrous Histiocytoma (MFH) was.  MFH is the sarcoma that Offel's doctors had discovered in his knee.  According to Carol Morris of Memorial Sloan-Kettering Cancer Center in an article published by sarcomahelp.org, MFH is "a malignant neoplasm of uncertain origin that arises both in soft tissue and bone."  Like most sarcoma patients, Offel had never heard of the disease with which he had just been diagnosed and which might result in the loss of his leg.  

To quote Morris again, "Surgery is the cornerstone of treatment for all soft tissue sarcomas" (Morris, MFH) and Kirk did undergo surgery - twice.  Fortunately, doctors at MD Anderson were able to avoid amputation.  They were able, instead, to do a limb-sparing procedure that took a large chunk of tissue (which he playfully calls a "shark bite") out of his leg, but left enough muscle that they expected him to walk again.  He did a lot more than that.

As a way of helping Kirk to stay motivated during his long recovery, his good friend and Chief Petty Officer Rob Reid challenged him to begin training for a Marathon as soon possible.  Not only did Kirk do exactly that, he also lists the following as his "proudest accomplishments" on his website

1. Started a 501(c)(3) Non-Profit Organization
2. Created a website
3. Created a team (currently 30+ people) to help me raise awareness for Sarcoma
4. Participated personally in 6 triathlons including the Texas Triathlon series
5. Generated ~10 corporate sponsors to help fund the teams efforts
6. Joined a strategic alliance with the University of Texas M.D. Anderson Cancer Center
7. Joined a strategic alliance with the Liddy Shriver Sarcoma Initiative
8. And began raising money to try to reach our goal of $50,000

Offel's charity, Veterans for Sarcoma, is "an organization of Armed Services Veterans (and a few of our civilian friends;) dedicated to increasing awareness of sarcoma and raising funds for research assistance."   The Veterans for Sarcoma team participates in cancer-related triathlons, sometimes with a twist.  For example, each of the 40 members of the team that ran with Offel in the Capital of Texas Triathlon donated at least $50 to Veterans for Sarcoma.  Then the Liddy Shriver Sarcoma Initiative furnished the team with the names of 53 sarcoma patients, survivors, and those who lost their lives to sarcoma. Team members wore the names on their bibs as a way to make the event - and sarcoma - more personal.

In an interview with Clair Osborn of the Austin American-Statesman, Offel said that his leg did hurt as he ran the course, holding his "Veterans for Sarcoma" sign, but he is undeterred.  Speaking about his reasons for running in that race, Offel said, "This race is for the people who couldn't run in it," he said, blinking back tears. "I get e-mails once a week from someone who has lost their leg. I just live my life one day at a time because I know there's always a risk I may never watch my kids graduate or get married."

You can also see Kirk in a YouTube clip of his interview with Austin News kxan.com 

 

Spreading some sunshine

The North Bay Nugget - Ontario, CA: Canadian gymnasts turned out for the 11th annual Sunshine Classic special in May, running in honor of sarcoma patient Jenny Richmond.  North Bay, Ontario resident and original member of the North Bay Gymtrix Gymnastics & Trampoline Centre, Jenny Richmond was coming to the end of her battle against Ewing's Sarcoma during the event.  Participants in the run who had known her since her early days at Gymtrix wanted to be sure Jenny knew that she was loved and that they were thinking about her and her family as they ran.   They chose to wear ribbons in Jenny's favorite color – pink – and created a large sign which they decorated with personal messages of support and love for their teammate.  Gymtrix co-owner Nicki Chretien Mills had this to say about Jenny, "I've never met a human being so courageous or as much of an inspiration as she is.  Most of the kids here have never met her, but she's still an inspiration to them."

The local community had previously shown their support for the Richmond family by helping to raise money for Jenny and her fiance Ryan to get married before her illness became debilitating.  They formed a Facebook group, "Lets Support: Give Jenni the Wedding of Her Dreams" to collect donations that were used to give Jenny the wedding that she wanted.

Jenny passed away on May 25, 2009, the day after the end of this year's competition.

 

Singer, cancer patient Maura De Souza touched many lives

6/05/09 - Houston News: Family and friends gathered at the hospital bedside of sarcoma patient Maura De Souza to watch as she was awarded her Bachelor's degree in music from Sam Houston State University.  A promising young opera singer, Maura was unable to attend graduation ceremonies after her health took a sudden downturn just days before the big event.  A moving video posted across the Internet, shows the celebration, which included all the ingredients needed for a typical college commencement.  Maura's mother Erin described the ceremony as "complete with cap and gown and honor cord, processional and Pomp and Circumstance, faculty and admin in regalia, a commencement speaker, conferring the degree of Bachelor of Music, her framed diploma, and a choir song to close."  Though the hospital administrator was not too pleased by the violation of the hospital's visitation policies, the event proceeded amid tears of joy and sorrow.

Following the ceremony, both Erin De Souza and sarcoma specialist Dr Robert Benjamin lamented the dearth of new treatments for sarcomas.  Dr Benjamin explained the lack of progress in the development of FDA-approved drugs, saying drug companies "know they're not going to sell a whole lot of drugs for treating patients with sarcomas" because sarcomas are so rare.  Production of progressive new pharmaceuticals is tightly linked to profitability, regardless of the cost in lives.  In the case of sarcoma, the lives lost are those of children, adolescents and young adults like Maura, people of great potential lost too soon.

The video can be found on her mother Erin's blog "Maura Vs Toby."

 

Making the Hike Home

Posted By Brigett Jobin in the Whitecourt Star, Alberta Canada

Before he passed away of Ewings Sarcoma eight years ago, Quinton Walker was a real outdoorsman.  Quinton's brother Dustin remembers that Quinton's keenest interests included hunting and fishing, as well as motorcycle-riding and camping.  There wasn't a cancer treatment center close to the family's home in Sexsmith, Alberta, Canada.  Quinton travelled to Edmonton, 460 kilometers away (around 285 miles) for chemotherapy and radiation therapy.  Unfortunately, his treatment failed to cure him, so he took one last journey home to be with his family. 

To honor his brother, Dustin will now take that journey, except that he will do it on foot.  Dubbed "The Hike Home", the trip will take him 19 days.  Along the way, he had hoped to raise $5,000 for support services for cancer patients, including wigs and assistance with travel for treatment.  He's already exceeded that goal, having raised $8,400.  The trip will be book-ended by Canadian Cancer Society Relay's for Life – one in Edmonton the day he leaves and one in Grande Prairie the day he returns.  This is a highly motivating story! 

 

Fighting on

One year ago, T.J. Rasnick was facing an uncertain future. He was receiving treatment for synovial sarcoma. He missed his junior season on the soccer field and did not know if he would play again. What a difference a year makes. Recently, Rasnick signed a letter of intent to play soccer at Emory & Henry.

"It's just a blessing to be able to stand here and be ready to go to college in the fall," he said. "I know my family is very proud there. I'm just glad they can be here and go through all this with me because I know it's been tough on them too. It's just a blessing."

Even though Rasnick received the diagnosis on March 11, 2008, he never relinquished hope that he would be able to continue his athletic career. "You just keep your faith in God and you can do anything," he said. "There's not one day that I changed what I wanted to do or my goals. It's always been the same. You've just got a never-say-die attitude." Rasnick still goes to the National Institutes of Health in Bethesda, but he is healthy. "I'm doing well," he said. "I'm just taking my medicine. I go to NIH about once a month. I'm doing well." Rasnick had a choice between playing college football, college soccer, or placing his athletic pursuits on the back burner and focusing on his studies. In the end, he decided that the soccer team at Emory & Henry was where he wanted to be. In his final high school season, Rasnick reached the 100-goal milestone for his career — despite sitting out his junior season. He had 24 goals in his final season with Tazewell, playing in just 12 games.

He hopes he will be able to make a contribution to Emory & Henry right away. "I hope to go there and compete for a spot this year," Rasnick said. "But there's a great freshman class coming in. I think there's 16 freshmen coming in. So it's going to be competition every day. But I hope to go over there and compete for a spot right off." He knows that competition for playing time will be tough. "I know they've got a really good striker returning from last year," Rasnick said. "He was their leading scorer. He's a really good player. So I'll go over there and see what I can do."

Rasnick's family has been the biggest influence on his athletic career. "He and all my family, they've took me everywhere, travel sports, rec sports, high school sports," he said. "I went to the All-American combine for football in San Antonio, Texas. I've been to Rhode Island playing soccer tournaments. I wouldn't be half of where I was if it wasn't for them."

Rasnick will study pre-med in college, a major that was influenced by his personal experience. "I've been indecisive about what I've wanted to do for so long," Rasnick said. "But I just feel like kind-of after everything I've been through you need people to help you out and I feel like I can do that. They've got such a good program over there at Emory & Henry. You can go there and go through their pre-med program and write your ticket to medical school. I think that would be a good thing for me to do."

Throughout his long and arduous journey, T.J. relied heavily on his faith in a higher power. "If you put your faith in God, you can do anything," he said. "You just push every day. You live every day. You just do everything you can and as long as you keep your faith in God you just keep going. It was never 'I can't do this.' It was always, 'Nothing's ever changed.' It's always been the same from day one. Just never give up," he said. "Just keep fighting every day, keep your faith in God and you'll be just fine. You can do anything."

 

Step by step toward a sarcoma cure

Hundreds from across New England converged on Hudson High School on May 9th to take steps toward curing sarcoma during the fifth annual Jennifer Hunter Yates Sarcoma Foundation's 12,402 Steps to Cure Sarcoma Walk.

During a family summer vacation in 2002, Yates experienced severe pain in her right leg. She was initially diagnosed with a disc problem in her back and began physical therapy. By early November, the pain grew worse and doctors found a tumor in her right part of her abdomen and leg. Doctors performed a biopsy on the tumor and diagnosed Yates with a malignant peripheral nerve sheath tumor. The disease spread to her lungs and other bones. Yates underwent chemotherapy, but in January 2004, doctors told her the cancer was spreading rapidly. Surrounded by her family, Yates died in April 2004 at age 33.

The Yates sarcoma foundation was established in 2005 to raise money for sarcoma research and to keep Yates' memory alive. Ninety-five cents of each dollar donated goes directly to Massachusetts General Hospital's Center for Sarcoma. "It is important to do both," said Susan Erickson, Yates' sister and chairwoman the Cure Sarcoma Walk. "Not only is it important to raise funds for sarcoma research and treatment, but it is important in that the walk raises awareness about sarcoma, as well as providing a community to the people who are currently battling sarcoma and for those who have lost someone to sarcoma."

The walk has raised more than $450,000 for sarcoma research, clinical trials, education and family support programs - which has saved the lives of many people who participate in the walk, including Worcester resident Andrew Greiner. "I'm alive because of the sarcoma walk," Greiner said in a press release. "Had it not been for their organizer, Susan Erickson, I would have gone on for months thinking I just had a bruised leg. I sincerely believe I'm here today and able to be with my wife, Angela, and my sons because of Susan and her organization."

In 2005, about 200 people attended the walk. This year about 400 people walked in the event. The 12,402 steps, which equal about 6 miles, represent the number of days Yates lived. "While my sister would be mortified about her name around all over, she would be proud at how we have helped others."

 

School Helps Student With Sarcoma

Students at Chandler's Hendrix Junior High are rallying behind a classmate who has been diagnosed Ewing's sarcoma. Ashley Rojo, 13, is a seventh-grade student at Hendrix.

While she is away from school, her classmates and teachers are trying to raise funds for her medical care. "The school came together the second we found out she had bone cancer, and we realized she would be out the rest of the year," Ashley's teacher, Jeremy Jones, said. On April 29, Jones shaved his head during the lunch period to mark $1,000 in student fundraising. "We're trying to raise more money because of the family situation," Jones said. "Her mom is a single mom. She has $100 to her name." Fundraising has so far included a coin collecting battle between classrooms and a "Hats off to Ashley campaign" where students paid $1 to wear a hat at school.

Ashley's illness was discovered April 9 after a busy weekend playing football with neighbors, skateboarding and walking with her uncle. On that Sunday, she had a restless night of sleep so her mom kept her home, not sure what was causing the problem. Missing school is a rare event for Ashley, her mom says. "She loves it (school) so much," Garcia said. "She wants to be a policewoman. That's her whole goal in life. But she had to miss it. She was in so much pain." Ashley's diagnosis took the family by surprise since Ashley is an active, healthy child. She has never gotten sick at all, her mother, Yvette Garcia, said.

The fundraising by the school is a relief, her mother said. Her employer, Wal-Mart, has given her a year off while Ashley stays away from crowds and school while her body tries to fight off the cancer. Family members in California are also trying to help financially. Garcia began to cry while speaking of the fundraising efforts on the phone April 30 from Ashley's hospital room April. "I'm so happy that all these teachers care about my daughter. I never thought this would happen to my child. It was amazing how they care so much about my daughter. She's such a good girl. I'm so happy. There's no words. I can't explain it. All these people reached out for my child."

Several students said they are helping in the efforts for Ashley and her family. Sernando Vargas, 14, said he and Ashley have known each other for two years. "She likes basketball. She's fun. She's awesome. She likes SpongeBob. We always played basketball and hang out," Vargas said. Sernando said he's donated money to help Ashley's family, including buying a bracelet and putting pennies in his class money war jar, an effort by all classes to see which one can raise the most funds for Ashley and her family. Itzel Lucero, 12, said she's attended class with Ashley since fifth grade. "She's funny and she likes to play around and play pranks on people a lot," Itzel said.

The news of Ashley's cancer was shocking to fellow students. "I've always known her as a healthy, basketball-playing girl," Itzel said. "I felt sad for her. I didn't think she would ever get cancer. I felt bad, but I also wanted to help out as much as I could." Itzel collected money from neighbors to help. "I hope we (raise enough) to help them out. I think she'll be in and out of the hospital for a year," Itzel said. "I know her mom can't work because she's taking care of Ashley, so I hope we get a lot." Jones said he is seeking out other ways to raise funds. "I'll shave my head again, do anything crazy," he said

V6N3 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.

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April 2009