DANI'S FOUNDATION

First national clinical trial for incurable children’s cancer launched by Van Andel Institute

martha — Tue, 21 May 2013 13:00:55 +0000

From http://www.mlive.com/news/grand-rapids/index.ssf/2013/04/first_national_clinical_trial_1.html

GRAND RAPIDS, MI – The first national clinical trial ever approved to study all incurable children’s cancers is underway at Van Andel Institute.

Of the 10,000 pediatric cancer cases diagnosed each year, about 25 percent are considered incurable even with aggressive treatments. The study will analyze the molecular makeup and genetic mutations of individual tumors to create a targeted treatment plan for each patient.

“We are very excited to have this study at Van Andel Institute,” said Dr. Giselle Sholler, the pediatric oncologist leading the research.

The Food and Drug Administration approved the study, which will include up to 50 patients and will be conducted at 15 hospitals around the country, including Helen DeVos Children’s Hospital.

The study is not testing experimental drugs, Sholler said. Rather, it is using the analysis of the tumors to determine which of 200 drugs already available would be most effective. And by targeting the therapy, the doctors aim to avoid the use of high doses of chemotherapy and improve the quality of life for children fighting a terminal illness.

“Instead of guessing what we should treat our children with, we are using the information to guide us in a smarter way,” she said. “We want to give them therapies that will have them well and going to school and playing – and not have them in the hospital the whole time.”

For the mother of a child enrolled in the study, the personalized approach is a welcome change from the standard course of high-dose chemotherapy.

STUDY DETAILS

“If you can test the individual tumor and base a treatment plan on the individual tumor, you are not just throwing darts in the darkness,” said Annabeth Goss, of Mesa, Ariz. “You at least have a flashlight.”

Her 3-year-old daughter, Abigail, who is fighting neuroblastoma, was the first child to enroll in the trial.

Doctors at DeVos Children’s obtained samples of Abigail’s tumor for analysis. A tumor board made up of representatives from the 15 research institutions and hospitals discussed the results and chose the combination of medications to combat her cancer.

The complex analysis of the tumor’s genetic fingerprint is performed in “real time” with help from a multi-million dollar grant and computing cloud technology donated by Dell Inc.

“Funding for pediatric cancer research is extremely difficult,” Sholler said. “We are thankful to Dell – they have been really supportive of our families and our patients.”

The clinical trial builds on a study that began in May 2011 focused on relapsed cases of neuroblastoma, a cancer of the peripheral nervous system. That study, also led by Sholler, involved 14 young patients at sites around the country.

Although results are still being analyzed, Sholler said the findings were “great.” Doctors were able to obtain the molecular analysis of tumors and begin treatment within two weeks. Although the patients’ cancer was considered incurable, more than half had a long-term response to treatment.

The current study includes other forms of cancer and more patients – and it also involves another layer of analysis. The first trial based treatment on the molecular makeup of the tumor – or the gene expression profile. In this study, the DNA of the tumor is included as well.

“We are using a cancer gene panel that looks at 46 mutations common in cancer,” Sholler said.

The analysis of all the tumor samples will be performed at Spectrum Health, using an Ion Torrent machine, Sholler said.

The trial will expand, she said, once the infrastructure for the study is set up at all the institutions. In a couple of years, she hopes to be able to include 500 patients.

“I’m hoping we can cure some of these children we are seeing,” Sholler said. “I’m hoping we can decrease the disease burden and improve their quality of life.

“On the research side, I hope we can learn more about the genetics of the different types of tumors we are treating.”

Forms of cancer being treated

The VAI provided background about the cancers included in the study:

Neuroblastoma: The tumor of the peripheral nervous system usually strikes children 6 and younger. About 700 new cases are diagnosed each year. The prognosis for infants with the disease is generally good, but for children older than 15 months, the five-year survival rate is less than 50 percent even after aggressive chemotherapy and a stem-cell transplant. For those who relapse, long-term survival is below 5 percent.

Central nervous system tumors: Solid tumors of the brain and spinal cord are diagnosed in 3,000 to 4,000 children each year – accounting for 25 to 30 percent of childhood cancers. Although many are treatable, the prognosis is not good when there is a relapse or if the tumor does not respond to initial treatments. In those cases, the cancer is usually fatal. A treatment plan based on the biology of the disease could improve a child’s chance of survival, the researchers say.

Rare cancers: Although the survival rate has improved in the past 40 years for about 80 percent of children’s cancers, the outlook is poor for patients with relapsed, rare and advanced-stage tumors. Rare cancers include soft-tissue sarcomas, renal cancers and malignant bone tumors, such as Ewing’s sarcoma and osteosarcoma. Depending on conditions involved, some of these cancers have a good prognosis, but for many children, the odds of long-term survival are low, even with high doses of chemo and stem cell transplants.

Bereaved Family Calls for Change in the Law After Teenaged Daughter When She Was Denied Cancer Drugs

martha — Mon, 20 May 2013 13:00:05 +0000

From http://www.dailymail.co.uk/news/article-2315818/Debbie-Binner-Bereaved-family-calls-change-law-teenage-daughter-Chloe-Drury-died-denied-cancer-drugs.html

Chloe Drury told she was too young to take part in drugs trials
Died from Ewing’s Sarcoma a month after her 18th birthday
Family have now called for age restrictions to be lifted for trials

The family of a teenage girl who died after she was refused access to potentially life-saving cancer drugs has called for a change in the laws governing who can take part in medical trials.

Chloe Drury was told she was too young to take part in the drugs trials by American pharmaceutical company BioMarin while she was suffering from a rare form of bone cancer, despite pleas from her parents, doctors and politicians.

She died in February, a month after her 18th birthday, from Ewing’s Sarcoma after the cancer had aggressively progressed.

The previous September, when she was 17, she was told she could not take part in the trials as it could ‘jeopardise [her] safety and the integrity of the trial data’, her family have told Sky News.

Chloe, from Purley, in Surrey, was allowed on the course when she turned 18, but by then it was too late.

Her mother Debbie Binner told Sky News: ‘We were just sitting there watching our beautiful 17-year-old daughter get weaker and weaker, knowing there is something out there she could have had and it just seems totally wrong to me, and not a world that I want to live in that treats young people like that.’

The family now wants age restrictions to be lifted for trials.

In a statement, BioMarin has said their deepest sympathy went to the parents.

The company said: ‘It is precisely because of patients who suffer from devastating rare genetic diseases that BioMarin develops therapies where there are few, if any, options.’

The company said it was conducting a trial in several genetically defined cancers, but it added: ‘It is premature to know if it is safe or effective.’

Cancer Research UK’s clinical research director Kate Law said the guidelines did not always make sense and sometimes stopped teenagers taking part.

She said for many trials there was ‘no good reason’ for the restrictions.

Three Wake students battle rare cancer: Cluster or coincidence?

martha — Sun, 19 May 2013 13:00:00 +0000

From http://www.wral.com/three-wake-students-battle-rare-cancer-cluster-or-coincidence-/12389860/

Raleigh, N.C. — A Wake Forest mother is pushing the state to investigate after three teenagers from the same graduating class were diagnosed with an extremely rare form of cancer. A fourth teen who lived nearby received the same diagnosis in 2009.

The teens, all of whom lived within a 3- to 4-mile radius of each other, battled Ewing’s sarcoma – a cancer so rare that only about 250 people in the U.S. are diagnosed with it each year.

Robin Harris, whose son Alex Harris was diagnosed in March 2011, reported concerns about a possible cancer cluster to her son’s doctor at Duke University Hospital, the North Carolina Department of Health and Human Services and a sarcoma organization.

“Statistically, it’s unbelievable … Someone needs to look at it and say, ‘Hey, we need to investigate this,’” Robin Harris said.

She and the other families say they were under the assumption that the cases would be investigated. Robin Harris says she was told the cases would be referred to the Centers for Disease Control and Prevention.

The WRAL Investigates team found that the state did not do a thorough investigation, the CDC was not informed of the cases and the families were kept in the dark due to an “unfortunate oversight,” according to a DHHS spokeswoman.

Ewing’s sarcoma is a childhood cancer found in the bone or soft tissue and usually strikes children, mostly white boys, between the ages of 10 and 20. Some symptoms include pain or swelling in the arm, leg, chest, back or pelvis and a fever or broken bone for no reason, according to WebMD.com. Researchers understand little about the cancer, but they don’t think it’s hereditary.

Carly O’Day, now a freshman at East Carolina University, was diagnosed with Ewing’s sarcoma two months before her high school classmate Alex. Another classmate, Zach Osborne, was the third to be diagnosed.

“I’m thinking there has to be something up,” Zach said.

Zach, Carly and Alex went to the same middle and high schools together. The trio shared a class in a trailer during their freshman year at Wake Forest-Rolesville High School in 2007-08, but that is the only place they can remember where all three were together over an extended period of time.

“(I) actually sat beside Alex. It was literally back-to-back classes. I had one with Carly first and then one with Alex,” Zach said.

During their senior year, the 50-year-old building underwent renovations and they remember walking through construction. However, doctors say no one knows the cause of their cancer or what could have triggered the cases.

The three classmates were each treated at Duke Hospital, which has a team designated to sarcoma research.

“It’s really hard to know when these genetic errors happen … For the vast majority of childhood cancers, we don’t know the inciting event,” said Dr. Corinne Linardic, who works with pediatric cancers at Duke. “(However), I think that any sort of rational person would pause and say, ‘Hmm, that’s unusual. This should be reported.”

Robin Harris says she’s aggravated because she did report the cases and she doesn’t believe the state did a proper investigation.

The WRAL Investigates team found that the information she provided was forwarded to the North Carolina Central Cancer Registry, which is a division of the North Carolina Department of Health and Human Services. On Oct. 17, 2012, the cancer registry wrote a letter to Robin Harris but failed to send it to her due to an “unfortunate oversight,” according to DHHS.

After the WRAL Investigates team alerted DHHS to the error, the agency reached out to Robin Harris “to apologize for the oversight and to see that the October 2012 report is delivered,” DHHS spokeswoman Julie Henry said in a statement.

“As a result of this incident, a new policy for tracking cancer cluster inquiries has been developed to ensure prompt response to the citizens we serve,” Henry said.

In the October 2012 letter, the agency said it reviewed fewer than 1,800 Ewing’s sarcoma cases in North Carolina between 1990 and 2011. Of those cases, fewer than 120 were diagnosed in Wake County.

“This case, we did not find an elevation compared to the state rates,” said Dr. Ricky Langley, an epidemiologist with the state Division of Public Health. His group investigates cancer clusters by looking beyond the numbers.

Despite the three Wake Forest teens living within miles of each other and going to the same school, the cancer registry said their cases were “not concentrated in one area,” according to the letter.

“I was not involved in this case, so I can’t really give you all the details on that,” Langley said. “We work closely with the cancer registry. Once a problem is identified from them or us, we tend to share the information.”

Langley says there was no sharing of information in this case, even though it seemed “suspicious,” “unusual” and “would warrant further investigation.” When asked about the process of investigating clusters, Langley admitted there are flaws in the system.

Robin Harris and the other families say they hope the state will take the cases seriously and investigate. “Three kids in the same graduating class, having the same cancer and no one is shocked at this?” Robin Harris said.

“When Carly and Alex happened, that was very weird,” Julie O’Day, Carly’s mother, said. “That was, ‘Wow, there’s got to be something going on in the water.’ But when Zach got it, it’s like, ‘God, it has to be a cluster, because there’s no other explanation for it.’”

Duke Hospital and public health department officials say they rely on families to report suspected cancer clusters. State health officials say they investigate 12 to 15 possible clusters a year and that confirming one is very rare. The last confirmed cancer cluster was in Greensboro in 2012 and the cause was undetermined, according to Langley.

Those who want to report a possible cancer cluster should call DHHS’s Occupational and Environmental Epidemiology branch at 919-707-5900.

Mary Crowley Cancer Research Center FANG Ewing’s Sarcoma Clinical Trial

martha — Sat, 18 May 2013 13:00:10 +0000

From http://marycrowley.org/en/Clinical%20Trials/Ewings%20Sarcoma.aspx

Dani’s Foundation is pleased to support the Mary Crowley Cancer Research Center and their current clinical trial for Ewing’s Sarcoma. To find out more information on this targeted therapy, please visit the Mary Crowley Cancer Research Center website at www.marycrowley.org.

A Phase I Trial of bi-shRNA^furin & GMCSF Augmented Autologous Tumor Cell Vaccine for Advanced Cancer (FANG^TM).

A Phase 1 clinical trial of the FANG ™ personalized immune therapy is currently open for Ewing’s Sarcoma patients. This investigational therapy is constructed to incorporate the unique genetic characteristics of each patient’s cancer. A portion of the patient’s cancer tissue that is removed during a surgical procedure is allocated for the manufacture of a “triple” vaccine. A “triplex” vaccine is unique and designed to educate the patient’s immune system to identify tumor cells as foreign bodies; to enhance the immune system to increase the production of tumor attacking T cells; and to block the enzyme Furin to inhibit the activity of immunosuppressor proteins. The manufacturing process is successful in approximately half of cases and is complete in approximately 4 weeks. After the manufacturing process, the patient is evaluated for participation in a clinical trial to receive the monthly vaccine injections over a 6-12 month period.

For additional information, contact Maurizio Ghisoli, MD at 972-566-6647.

Marathon effort for charity run

martha — Fri, 17 May 2013 13:00:48 +0000

From http://www.worksopguardian.co.uk/news/local-news/marathon-effort-for-charity-run-1-5642867

Clowne man Lee Cook donned his trainers to run the London Marathon in memory of Lee Marklew who passed away in August last year.

Lee, 34, completed the gruelling 26.2-mile course to raise more than £3,800 for the Bone Cancer Research Trust (BRCT).

Lee Marklew, 32, died on 10th August after losing his battle with Ewing’s Sarcoma – a rare and aggressive form of bone cancer.

His friend Lee has worked tirelessly to raise money t support Lee’s family for treatment and for the charity to help others diagnosed with cancer.

He thanked everyone who donated generously to support him as he completed his first ever marathon.

“The marathon was hard work. I got cramp around the half way mark and hobbled over the line in five and a half hours. It was my first – and last – marathon so it is a personal best! “ he said.

“The support from people back home during the race was amazing and I expect to top £4,000, nearly double my original target so really pleased.”

Lee is hoping to hold another football game this summer to raise money for BRCT.

Community rallies behind Hopewell girl diagnosed with Ewing’s sarcoma

martha — Thu, 16 May 2013 13:00:20 +0000

From http://www.mpnnow.com/topstories/x1398950334/Community-rallies-behind-Hopewell-girl-diagnosed-with-Ewings-sarcoma

In the months following her daughter’s diagnosis with a rare bone cancer, Doreen Smithling said the outpouring of support from the community has been “incredible.”

“It’s very humbling,” said Smithling, whose family lives in Hopewell. “Family and friends are what is getting us through. The school, churches, organizations, just everyone is coming together to support us.”

Her daughter, Morgan, 11, a sixth grader at Marcus Whitman Middle School, was diagnosed in January with Ewing’s sarcoma. She has since undergone several treatments of chemotherapy, and will start another round of treatments this month, her mother said.

“She’s always smiling, active,” Doreen said, of her daughter. “She loves to be outdoors. She swims and plays lacrosse.”

Since Morgan was diagnosed, Doreen said there have been events at school in support of Morgan, and fundraisers have included a swimathon in March, which was hosted by the Whitman Area Swim Club. The New York Brown Swiss Association also auctioned a calf to raise funds for her family, which owns Brown Swiss cows. Morgan shows them at the Ontario County Fair, Doreen said.

Several more fundraisers have been planned, including a Day of Caring Saturday at Gorham Intermediate School. The event — which will include a chicken barbecue, rummage sale and live auction, among other activities — will raise funds for the Morgan Smithling Care Fund to defray the cost of the family’s medical expenses.

The Day of Caring is being spearheaded by three of Morgan’s former Girl Scout leaders, Margaret Rollins, Brenda Lehman and Lane Blankenberg.

“When she was diagnosed, we came together to brainstorm ways we could be helpful,” Rollins said. “It was really a rallying point for people looking to help Morgan and her family.

Rollins said that among those involved in the event are the swim club, the town of Hopewell and Morgan’s family, classmates and former teachers.

“This is the kind of area we live in — people help one another,” Rollins said. “It’s been interesting to see how many lives Morgan has touched and her family has touched. It’s been a unifying force for us all to come together and do this.”

Dying cancer sufferer Steph Knight chased over credit card bill of £42

martha — Wed, 15 May 2013 13:00:30 +0000

From http://www.hertfordshiremercury.co.uk/Hertfordshire/Dying-cancer-sufferer-Steph-Knight-chased-over-credit-card-bill-of-42-20130502115423.htm

A TERMINALLY-ILL cancer sufferer has been chased by a credit card firm for an unpaid bill – of just £42.

Former trainee teacher Steph Knight, whose four-year battle with Ewing’s sarcoma has led to her losing her right leg and part of her pelvis, was pursued by banking giant Capital One for the petty amount of cash.

The damage done by the illness means Braughing resident Steph, 21, is struggling to communicate so her loving mum Cindy stepped in to help clear the bill.

But Capital One initially refused to tell Cindy where the money had come from because the debt was in her daughter’s name.

The bank only performed a U-turn after TV star Amanda Holden intervened.

Speaking yesterday before the bank’s change of heart, Cindy said: “I thought we’d paid it all off six months ago when Steph was diagnosed as terminal.

“Because it’s Steph’s account they won’t let me do it.

“Her mind is going a bit and she can’t write so can’t do a letter.”

Cindy said the issue had heaped unnecessary worry on the stricken family.

She said: “It’s the last thing we want to have to do at the moment.

“When they’re taken up by red tape so much at a time like this you really have to wonder if that’s right.”

She added: “It’s a shame red tape ties companies up so tight that there’s not a human being at the other side who can make a decision when there’s something out of the ordinary.”

Britain’s Got Talent judge Amanda, who Steph met through the Willow Foundation charity, urged Capital One to rethink their actions.

Amanda wrote on social networking website Twitter: “Capital One you need to contact [Steph’s] parents NOW. Steph is not well enough to talk to you obvs. This is utterly ridiculous.”

A Capital One spokesman said: “We were very sorry to hear of what had happened.

“For our customers’ protection the data protection regulations prevent us from commenting on individual customer cases in detail.

“As soon as we became aware of the case we were able to resolve it straight away.”

Cindy said: “Steph has been very poorly but every day she manages to make us laugh and show her strength.

“Steph’s not ready to go just yet – there’s no doubt about that. She’s going to fight all the way and there are a few wishes still to be fulfilled.”

Annual barbecue fundraiser to support Osteosarcoma research

martha — Wed, 15 May 2013 12:45:39 +0000

From http://www.yourhoustonnews.com/pearland/living/annual-barbecue-fundraiser-to-support-osteosarcoma-research/article_9d5ec188-3dd1-5202-b8ac-ac1d955a7781.html

Senior year of high school can be the most stressful and busy, but also the most exciting year of a young person’s life. It starts with senior pictures, football games, homecoming, college visits, athletic activities, parties, schoolwork, after school activities, prom preparation, and builds up to the major events of Prom and graduation. The year passes by so fast because the students and parents are so busy. It was during the busy senior year of 2007 that Jennifer Haynie noticed but tried to ignore a dull aching in her left leg.

Jennifer was a high school athlete, class officer, and Oiler vision star during her senior year at Pearland High School. She was diagnosed with Osteosarcoma one month before graduation. She had plans to attend Texas A&M University to major in Business and had a bright future ahead but none of her plans would be fulfilled. When finally diagnosed, the bone cancer had already spread to her lungs and despite a year of intense surgeries and treatment, she died on May 18, 2008.

About a year after Jennifer’s death, her mother and aunts organized the Haynie Spirit Bone Cancer Foundation, a 501(c)3 non-profit group. The idea of a Foundation started amidst the despair and frustration felt after Jennifer’s death.

“We felt that we had to take action to try to do whatever we could to further the cause of finding a cure for Osteosarcoma. During Jennifer’s illness and death, our family realized how many people’s lives Jennifer had touched in her short time here. We want to transform that love and support into ACTION. “

The Foundation hosts two major fundraisers per year, the annual BBQ Fundraiser at Independence Park in May and the Galveston SeaWalk in December. This year’s BBQ fundraiser will take place on May 18 from 11 AM to 4 PM under the big pavilion at Independence Park. BBQ plates will be $12 or whole cooked briskets can be ordered ahead of time on the website (www.hayniespirit.org). There will be live music, a silent auction, live dessert auction, kid’s games, crafts, and a volleyball tournament. All funds raised are to promote education about osteosarcoma and to support research efforts at MD Anderson Hospital.

Osteosarcoma is a rare type of bone cancer, most commonly occurring in children and young adults under the age of 20. Each year in the United States, there are approximately 400 new cases diagnosed. The peak incidence of osteosarcoma is in the second decade of life, during the adolescent growth spurt. The most commons symptoms are pain, swelling, and sometimes decreased joint motion. Occasionally, a patient may present with a fracture at the tumor site. Symptoms are usually present for several months before the diagnosis is made. The symptoms are commonly missed because they occur in active teenagers, and are written off as “sports injuries.”

About 15-20 percent of the patients have metastatic disease at the time of diagnosis – usually in the lung and the bones. The presence of metastasis at diagnosis has a major impact on patient survival. The estimated survival rate for patients with localized osteosarcoma is about 75 percent compared to 30 percent for patients with metastatic disease. Osteosarcoma has one of the lowest survival rates for childhood cancers, due largely in part to the lack of available funding for research. M. D. Anderson Cancer Center in Houston is one of the only cancer centers offering the most advanced treatment for osteosarcoma.

Shoppers can help Alayna’s dream come true

martha — Tue, 14 May 2013 13:00:58 +0000

From http://www.getreading.co.uk/news/s/2133431_shoppers_can_help_alaynas_dream_come_true

A 10-year-old Tilehurst girl battling cancer has dreams one day to visit Disneyland in Paris – and Reading shoppers can help make her wish come true.

Alayna Fernandes, of Blewbury Drive, was diagnosed in September with Ewing’s sarcoma – a rare bone cancer which has caused tumours in her pelvis.

She was in considerable pain and was immediately had three weeks of scans, tests and biopsies.

After that, Alayna had to undergo 14 cycles of chemotherapy – each cycle lasting five to six days – and after the fourth she received the good news that the tumours had started to shrink which meant the treatment was working.

But in January and February she suffered a setback – sick with vomiting and diarrhoea for a week, then showing the same symptoms a few weeks later and catching the C-dificile infection.

Her mum Vea Fernandes said Alayna was tired of the rigorous chemotherapy routine. And she described her own anxiety when Alayna started vomiting earlier: “For a whole week, I helplessly watched her getting weaker and weaker, not eating and not leaving her bed until Sunday night at 10pm when her temperature reached 38 degrees C. We rushed her to our local hospital.”

While she was ill, the chemotherapy had to be postponed, then a few weeks later the symptoms returned.

“But that’s all behind us now,” said Mrs Fernandes.

“We have only praise and gratitude for all the hospital staff, especially the nurses as they are so kind and dedicated.”

Last week Alayna was in hospital again starting a six-week course of radiotherapy. She will have feeding tubes in her stomach and arm, so she will not be allowed to go swimming as they have to be kept dry. The family are currently staying in London to be close to University College Hospital where Alayna is being treated.

The charity Starlight is hoping to send Alayna to Disneyland to fulfil her wish with the help of the shoppers in Reading.

Starlight grants once-in-a-lifetime wishes for seriously ill children and provides entertainment in hospitals and hospices. Mrs Fernandes said: “Alayna put the Disneyland holiday as her top wish – she says it will make her feel ‘normal’ again, going on the rides and all the fun will take her mind off her troubles.

“Also she is in desperate need of a break from this hospital-to-home routine. It will give her great joy.”

People can donate through the Give As You Live campaign which raises money as people shop online.

The campaign works with 2,392 stores including John Lewis, Tesco, B&Q, ASOS, Expedia and M&S which have promised to make a donation to the charity on every online purchase made by Give As You Live for Starlight shoppers.

Neil Swan, chief executive of Starlight, said: “Just by signing up to Give As You Live for Starlight, the Reading community could help to make Alayna’s dearest wish come true.” Visit www.starlight.org.uk/3yM

Tennis star’s battle gains worldwide support

martha — Mon, 13 May 2013 13:00:16 +0000

From http://www.wbir.com/news/article/272583/5/Tennis-stars-battle-gains-worldwide-support

Character is defined as a feature that distinguishes one person. It’s what makes good athletes great. It’s what got Sean Karl to UT, and made his story heard all around the world.

Sean was on the tennis court by the time he could tie his own shoes.

“Oh, it was quite a while ago. I’d say probably four or five,” Sean remembered.

By 16 years old, he was the number one tennis player in the nation. By his senior year, he was the rated the No. 6 recruit in his class. He had offers from all around the country, but the Nashville-native decided to come to Rocky Top.

“I love the facilities. I love the coaches. I love the guys on the team. I just really felt right.”

Sean made plans to graduate high school early, come UT in January and redshirt that first semester. But all of that changed after one trip to the hospital.

“In probably in late August, I was having a ton of pain in my side and went into the doctor. They thought I might have strained something or pulled, which was completely reasonable.

“One day after fall break, I was just in so much pain, that we had to go to the hospital to relieve the pain, and that’s where we found out.”

Found out that he had cancer. It was a rare form of bone and tissue cancer called Ewing’s Sarcoma.

“You know at the time I was in so much pain, and I was on a lot of Morphine and other pain killers. I was mentally numb as well, so it didn’t really hit me until a couple weeks later.”

Sean’s father, Mike Laurie, remembers the moment he got the phone call about Sean’s diagnosis.

“You know one day you think everything great. He’s down playing tournaments, and literally the next day, I’m at work, and I’ve learned that he’s been diagnosed with cancer. There’s no other way to put it other than your whole world gets turned around upside down really quickly.”

Within about a week, Sean started his first of several rounds of chemotherapy. What followed the diagnoses, was just as surprising.

He received gifts, letters and mementos from all around the world. He got a signed tennis racquet from Rafael Nadal. Andre Agassi send him a sign book with one message written on the inside cover. He’s got his own wristbands and shoe laces. Even a YouTube shout out from one of the sports all time greats- Roger Federer.

“That was pretty awesome. I did not expect it at all. One of the coaches said type this in on YouYube, and I was just like ‘alright’. I didn’t know why, and then I saw it ,and I thought that was pretty cool.

“You know I didn’t expect any of that. I didn’t ask for it either. People have just been showing so much support throughout.

Sean will finish his final round of chemotherapy on May 22nd. He graduates high school three days later, and will hopefully have green light to start playing again.

“They’ve been telling me that once everything’s over and all my blood counts get back, that everything should come back pretty quickly.”

But at the end of this long journey, what surprised the Karl family the most, wasn’t just Sean’s character, but the one’s around him.

“It’s mind boggling, it really is. It makes you realize how wonderful of a world, and how great a community we live in. What wonderful people are here and their support- the daily food deliveries that just keep coming. The people that come over and want to help all the time. Literally, it’s overwhelming.”