WEEKLY WEB REVIEW – WEEK 48

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is giving hope to patients fighting against their disease and improving quality of life during and after treatment.

BOY FIGHTING CANCER TOURS NEW FIRE HOUSE

This past Sunday, a firehouse in New Brunswick received a special visitor: a little boy from Hawaii, who is in New Jersey for cancer treatment. Trucker Dukes, 2-year-old, was diagnosed last year with stage IV cancer.

Exactly one year ago this week, at Thanksgiving, Trucker was diagnosed with a type of childhood cancer called neuroblastoma. “He was teething, and it seemed hard for him, harder than with the other kids,” his mother said. The family has 3 other children, ages 10, 8 and 6. Tests revealed a growing tumor, which was already stage IV when it was diagnosed. He and his mom have to fly back and forth every two weeks between Hawaii and New Jersey to receive an extremely specialized form of proton therapy at ProCure center in Somerset. What makes it even harder, however, is being away from their other family members, especially Trucker’s dad, Josh, who is a firefighter in Hawaii. “I know he misses his dad; they have a really special bond,” she said. A member of the New Brunswick Fire Department was following Trucker’s story on Facebook, and when he saw that they were in New Jersey, he said: “I had to contact them. I said, ‘Hey, you’re so close. You have to come to the firehouse.” Trucker had a great time, riding on the fire trucks, exploring the station house and eating with the firefighters. Trucker is recuperating now, but his fight is hardly over, and doctors warned that his next round of chemotherapy would be very aggressive. “At this point I just want to get him home for Christmas,” his mom said.

Source: http://patch.com/new-jersey/newbrunswick/boy-fighting-cancer-tours-new-brunswick-fire-house

 

A FAMILY’S FUNDRAISING CAMPAIGN FOR PROTON THERAPY

The family and friends of Josh McCormack, a 4-year-old British boy who was recently diagnosed with a rare brain tumor, are hoping to raise as much money as possible to help him and his family in his fight against cancer.

Nicola and Kevin McCormack were given the news just 3 weeks ago that their son has a malignant tumor on his brain stem. He is one of only 66 people worldwide to have been diagnosed with this condition. Josh underwent a pioneering operation to remove 75% of the tumor a fortnight ago. But he will also have to undergo chemotherapy and radiotherapy. It is hoped the radiotherapy will kill the remaining cancer, saving his life by preventing it from spreading to other parts of his body, but it will also prevent his head and spine from fully developing, affecting his memory, thoughts and learning ability. His dad said: “The operation was pioneering, it’s something they’ve only ever done in America. We got through that hurdle and thought it would be it, but then we were told that there would be permanent damage. His spine will never grow again and he’s only four – it’s just not fair. His brain will be affected with long-term memory loss. He’ll lose a few IQ points and he’s a very clever boy.” His family are hoping to travel to Munich to see whether Josh will benefit from proton therapy instead of radiotherapy, his only available treatment in the UK. His family have organized a sponsored Santa walk/run starting on the 12th of December, and they’re also encouraging supporters to grow a moustache for Josh, raising money in the process during his 6 week radiotherapy, which starts on Monday 23rd of November. To see the family’s fundraising page click here https://crowdfunding.justgiving.com/JoshMcCormack

Source: http://www.itv.com/news/granada/2015-11-24/a-familys-fundraising-campaign-for-proton-therapy-for-their-son-with-a-rare-brain-tumour/

 

BEV CHOSE PROTON THERAPY INSTEAD OF X-RAYS

Following a partial mastectomy for cancer in her right breast, 70-year-old retired school teacher Bev Grant was about to start traditional X-ray radiation therapy when a friend convinced her to look into proton therapy first.

“I have a pit bull of a friend called Lyle who was going through proton therapy at Scripps for prostate cancer, and he told me I had to do it,” says Bev. “He said proton was leading-edge treatment and people were coming from around the world to have it.” When she tried to explain that she had already committed to traditional radiation therapy, Lyle wouldn’t give up. And then Bev learned that another friend’s mother was having heart surgery: “Her mother had had radiation for breast cancer 10 years earlier, and her doctors told her the radiation had damaged her heart,” she says. “That really got to me.” Bev ultimately agreed to meet with a radiation oncologist at Scripps Proton Therapy Center. She learned she would need just 10 proton treatments over the course of 2 weeks, as opposed to 6 to 8 weeks of traditional radiation therapy. Bev was impressed with everything about the proton therapy center: “Everybody was kind and professional and had a wonderful sense of humor,” Bev says. “More than any other time in my life, I resorted to humor to get me through, and they seemed to feel that and humored me right back.” Throughout her treatment, Bev was able to go about her daily life and activities, including spending time with her two grandchildren. While she felt a bit more fatigued than usual, she kept up her regular social activities and day trips. Bev’s prognosis is excellent. “I would recommend it to everyone. If you need radiation, you owe it to yourself to look into proton therapy.”

Source: https://www.scripps.org/news_items/5543-bev-grant-chose-scripps-proton-therapy-instead-of-x-ray-radiation

 

WEEKLY WEB REVIEW – WEEK 47

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping families overcome the most difficult obstacles.

LITTLE GIRL HELPING FUND HER CANCER TREATMENT

8-year-old Asia Jackson was diagnosed with epithelioid sarcoma, a rare form of cancer, this past August. She’s helping her family pay for proton radiation therapy, which isn’t offered in Virginia, by making and selling beaded bracelets.

Asia’s form of cancer is usually only found in adults and spreads haphazardly through the body. “A regular tumor is in the form of a grapefruit or has a shape. This doesn’t. It’s just kind of all over the place,” Asia’s mother said. In three months, Asia has endured four long surgeries. Her neck, spine and arm are now severely weakened. She wears a “halo” brace screwed into her skull, to support her head. However, somehow, she doesn’t seem too bothered. “She actually is what keeps us going, her attitude,” her mom added. In fact, after her most recent surgery on Halloween, there was just one question Asia had for the doctor: “Can I go trick-or-treating?”. Asia is steadfast on recovering. However, she misses her friends, and most of all, dancing with her team. “I miss dancing. It’s the most fun thing in the world,” she exclaimed. Asia hopes to get back to performing after the treatment. Proton radiation will cost tens of thousands of dollars, and might not be covered by insurance since it’s out of state. While Asia’s family and friends continue to fundraise online and through bake sales, she’s determined to string as many bracelets as possible. “Those bracelets are just so we can raise money so we can go to Florida,” Asia said, as she sat with her doll at the kitchen table.

Source: http://www.nbc12.com/story/30551008/richmond-girl-makes-bracelets-to-fund-rare-cancer-treatment

 

JEAN’S STORY OF BREAST CANCER

After 25 years of faithfully submitting to her annual mammogram, Jean Aikens had never gotten the dreaded call, although her sister’s breast cancer diagnosis 20 years before had definitely put the possibility on her radar.

But between one breast cancer screening and the next, a 3 cm tumor had formed, and all of a sudden Jean found herself facing a biopsy, then surgery and radiation treatment. The 79-year-old survivor was referred to Provision Center for Proton Therapy in lieu of conventional radiation by her surgeon. As an asthma sufferer, she says, the treatment would help spare her lungs from damage caused by conventional radiation, which is much less precise than proton therapy. Jean and her husband Thomas left their home in Tennessee, and rented a small house in Knoxville, where she received 4 weeks of proton therapy treatment. Her daughter joined them for much of that time, and the couple’s two grandsons spent fall break seeking the sights of Knoxville. The Aikens made Knoxville a home away from home during their month-long stay. They got acquainted with a neighbor, who brought food over, took them on a tour of downtown and gave Thomas the job of trimming his hedge when he complained of missing the daily work on his small farm back home : “I can’t stand sitting around,” he says.

They also managed to have some fun along the way. The two women drug Thomas to the outlet malls, and during a trip to the Knoxville Zoo, Jean rode camel with her grandson.

“The only thing,” she says, “it was too short of a ride.”

Source: http://protonstories.com/jean-aikens/

 

SEVEN DAYS TO SAVE A LIFE

2-year-old Alexander Vinson from the UK needs proton therapy to save him from a fast-growing cancer in his brain and spinal chord. As it is not covered by the NHS, his parents have just one week to raise £150,000 and send their son abroad for treatment.

Earlier this year, Alexander was diagnosed with a rare and aggressive cancer called atypical teratoid/rhabdoid (AT/RT). He has already undergone two 8-hour operations and 3 rounds of chemotherapy, but it is failing to stop the tumor. Doctors said Alexander could benefit from proton therapy, and his parents are aiming to get him on the next available trip to Oklahoma to get the treatment, as his condition is deteriorating rapidly. “The oncologist made an application to the NHS but it wasn’t on the list. They said the treatment was not suitable for this type of tumor”, his mom said. Earlier this month, Alexander’s parents thus started raising the required £150,000 themselves, and they now have just eight days to make the arrangements and book the flights for the trip. They have set up a fundraising page and have already had £27,000 pledged in donations. They hope to raise the money by November 21 in order to be able to book the first appropriate flight to America on November 23. The treatment itself costs about £80,000, but money is also needed for accommodation, flights and any medical help he will need after the procedure. The co-founder of Kids ‘n’ Cancer charity, which has donated £10,000 to the appeal, said Alexander could die without the radiation therapy.

Source: http://www.dailymail.co.uk/health/article-3316974/We-ve-got-seven-days-save-son-s-life-Family-desperate-raise-125-000-treatment-NHS-refuses-life-saving-cancer-treatment-Ashya-King.html

 

 

 

WEEKLY WEB REVIEW – WEEK 46

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is taking part in the battle against cancer and giving back hope to the families of sick children.

8-YEAR-OLD IN REMISSION FROM CANCER

8-year-old Frankie-Rose Lea, who was diagnosed with cancer in her brain and spine on August 4 last year, is now in remission after pioneering proton radiotherapy in the US.

Following a public appeal last year, the family managed to raise £190,000 and fly Frankie-Rose to Oklahoma City on November 25, where she underwent six weeks of proton beam therapy in the ProCure Proton Therapy Center. Proton beam therapy achieves the same cell-killing effect as conventional radiotherapy but differs because the beam of protons stops once it “hits” the cancerous cells, causing much less damage to surrounding tissue. Her mom Lea and her family have thanked the public for the hundreds of thousands of pounds in donations raised for the expensive treatment. Today, Frankie-Rose has been given the wonderful news that her tumors are in remission. She will have an appointment early next year in the UK, with regular checkups needed for the next five years. Her mom said: “It’s the best thing ever, like winning the lottery 10 times. I haven’t dreamt of anything else but now it is here it is very surreal. She has conquered it. She’s a superhero in an eight-year-old’s skin. You can’t deny the science, which has been a major part of it, but everybody who got involved made a difference – I do think it is a miracle. The treatment has only become feasible because people got behind us. Although it’s early days we’re extremely happy.”

Source: http://www.newsshopper.co.uk/news/13950927.Brave_Slade_Green_eight_year_old_Frankie_Rose_Lea_in_remission_from_cancer/

 

DESPERATE MUM RAISING FUNDS TO FLY FAMILY TO THE US

A mother of 3 from the UK is desperately fundraising while she waits for the call to say she can take her 13-year-old son Alfie Barrett to America for the life-saving treatment he needs to get rid of his tangerine-sized brain tumor.

Since his recent second relapse, Alfie’s family has been getting ready to drop everything to spend 9 weeks in the States so he can get the proton treatment he needs to stay alive. His mother Kelly, 35, has been in a living nightmare since her first-born was diagnosed with a brain tumor at the age of 5 in February 2007. Two years of chemotherapy gave the growing boy lasting nerve damage, but did not shrink the tumor, which could not be operated on because it was so close to his brain stem. At least it became inactive and doctors said Alfie was in remission. “I didn’t ever think it would come back,” said his mom, but in 2012, her son mentioned he was having headaches. And when he woke one night with a numb left arm and a high temperature, she rushed him to hospital to learn that his tumor was growing again. After another year of chemo, Alfie went back into remission but last month, Kelly heard the words she had been dreading: ‘mum, I’ve got a headache’. The only option left open now is to get proton therapy, which can target the tumor directly instead of blasting everything in the vicinity like chemotherapy. As proton therapy is not available in the UK, Kelly is now frantically making arrangements for her and her three children to go to America as soon as possible. The founder of MumMum Foundation for moms with cancer has started a JustGiving page for Kelly to raise the money she needs to get her family out to America and a bit more besides to send them on a much-needed holiday after Alfie’s treatment. To donate, visit https://crowdfunding.justgiving.com/gary-valentinefuller-4

Source: http://www.southwarknews.co.uk/news/my-son-has-a-brain-tumour-the-size-of-a-tangerine-help-us-get-to-the-states-for-his-treatment/

 

FAMILY HOPEFUL AFTER PROTON THERAPY

2-year-old Theo Ward is back home after undergoing pioneering proton beam therapy in Florida. His family will have to wait possibly for years to know whether the treatment has been successful in obliterating the youngster’s tumor.

The NHS funded proton therapy after Theo was diagnosed with a rare form of cancer called embryonal rhabdomyosarcoma. As developed behind his left eye, the tumor was inoperable and the treatment in Florida was deemed his best chance of beating the disease. Theo has been enduring regular chemotherapy sessions over the past year, which continued in Florida alongside the new treatment. He was accompanied to America by his parents and big sister, who spent almost 8 weeks living in an apartment while he spent up to 3 hours a day in hospital, almost every day of their trip. “It was quite intensive, but he was so good,” said his mom. “The proton treatment only took about ten minutes a day, but he would be in hospital for two to three hours every time. His eye went really red and was very sensitive, just like an intense sunburn, which is all part of it and we were completely prepared for that. Luckily he was not sick or anything, he handled it really well and it just became normal for him.” Now back home, the family have to play the waiting game. “It will be at least a year until we know if it has worked, it could even be a number of years. We were told the chance of Theo having vision in that eye is unlikely, but we don’t know that yet either. We are just all looking forward to getting back to some sort of normality. We are hopeful that everything will be OK, that’s all we can be.”

http://www.falmouthpacket.co.uk/news/14026614.Family_of_Falmouth_toddler_hopeful_pioneering_treatment_in_America_has_killed_off_tumour/

 

WEEKLY WEB REVIEW – WEEK 45

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is giving hope and gathering people’s generosity around families in need.

 APPEAL FOR BRAIN TUMOR BOY

Alexander Vinson, 2 years old, needs proton therapy to fight against his brain tumor. His family is faced with the task of quickly raising £150,000 to send him to the US for the groundbreaking treatment.

Alexander has been diagnosed with a rare atypical teratoid rhabdoid brain tumour, known as ATRT. Alexander was initially taken ill on a flight to Romania back in the summer. “He started being sick and was walking with his head tilted, and we couldn’t work out why,” his mom said. “We were told that it was a brain tumor – and the only option from there was for Alex to undergo surgery, chemotherapy and radiotherapy treatment,” she added. The fast-growing tumor is developing in Alexander’s brain and spinal cord, giving his parents a race against time. Alexander has already undergone two 8-hour operations to remove approximately 80% of the tumor. He is already undergoing chemotherapy and will receive radiation treatment when he turns three. The family has been told that proton therapy is his best option, but because his type of tumor is not on the NHS’s funding list, funding for the treatment is not available. This means that Alexander’s parents have no option but to raise the money themselves. The couple contacted the charity Kids ‘n’ Cancer, which has already helped almost 150 families in the past five years, and has agreed to adopt Alexander’s campaign. “It’s now a case of raising the funds as soon as we can to enable Alexander to start recovery treatment in America,” his dad said. “If we can it would be the best Christmas present that we could wish for.” For more information or to support Alexander’s appeal, visit his just giving page: https://www.justgiving.com/actionforalexander/.

Source: http://www.westerndailypress.co.uk/Appeal-boost-Westbury-brain-tumour-boy-Alexander/story-28086156-detail/story.html#1

 

SISTER FUNDING LIFE-SAVING TREATMENT FOR LITTLE BROTHER

A charity drum and bass night will be held in Reading, England to raise money and fund potentially life saving treatment for Charlie Ilsley, an 8-year-old boy suffering from brain cancer.

After undergoing 38 rounds of radiotherapy, chemotherapy, brain surgery and physiotherapy, Charlie is still battling against brain cancer and may require further treatment. His family have been told that more radiotherapy would put Charlie at risk of developing a second cancer, and they are thus looking to access proton beam therapy. Charlie’s family still remains hopeful that he will win his battle without proton therapy and if so, they will donate the funds to the John Radcliffe Hospital children’s cancer unit. “The MRI scans shows that the chemotherapy and radiotherapy have worked. He will still be having chemotherapy until January but his doctors have said that he will most likely relapse as it is an aggressive cancer. It will be too much of a risk giving him more radiotherapy so we are trying to fund proton beam therapy”, his 26-year-old sister Jessica said. As the procedure is not available on the NHS, Jessica is putting on a charity event at Club20 in Hoiser Street, Reading, UK on Friday November 20. She added: “I would like to say a special thank you to everybody who is playing on my night, everyone at Club20, all my friends, family and people on social media for sharing. I hope everyone has a awesome night.”

Source: http://www.getreading.co.uk/news/reading-berkshire-news/reading-woman-host-charity-music-10338261

 

FAMILY COPING WITH SON’S HEALTH CRISIS

Each weekday morning for the past four weeks, Jeffrey Woody Jr. and his parents from Newburgh, N.Y., have risen from their beds in a Somerset, N.J., hotel room and renewed their battle for the young man’s future.

Six months ago, Jeffrey Woody Jr., 24, was preparing to graduate from college, planning and dreaming for his future. That was before the vomiting, the paralyzed vocal cord and the headaches, and before a neurologist delivered the diagnosis: melanotic schwannoma, a rare brain tumor. Jeffrey tried to avoid talking to his parents as his voice began to weaken. He tried to pretend the headaches, vomiting and weight loss were not serious. In April, two months before graduation, his weight had dropped to 135 pounds from 155 pounds and his voice had dropped to a whisper. “I was slowly deteriorating,” he said. At the hospital, doctors prescribed medication for an ulcer and acid reflux. He returned a week later, this time admitted for pneumonia. A neurologist was called and an MRI ordered, which showed a paralyzed right vocal cord and a brain mass. He underwent surgery on August 4th, which removed most of the tumor. Now, he is facing six weeks of radiation therapy. Jeffrey and his family are spending their weeks away from home to get him proton therapy treatment at the ProCure Proton Therapy Center in Somerset, NJ. At some point between noon and 3 p.m., he sits in a chair, medical technicians put on music and place a custom-molded mask over his face, and for 20 minutes, a machine sends a concentrated beam of protons to sections along the right half of his head. “They say after the third week, that’s when it gets worse,” his mom said. For now, Jeffrey is only enduring increasing fatigue and the loss of his facial hair.

Source: http://www.recordonline.com/article/20151102/NEWS/151109886

WEEKLY WEB REVIEW – WEEK 44

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping young children through heir illness and giving hope back to their families.

YOUNG BOY POLISHES HIS SUPERPOWERS

3-year-old Mason Macri from Canada was diagnosed with a rare cancer called rhabdomyosarcoma. Like many little boys, he is fascinated with superheroes, that’s why his parents told him that each proton therapy treatment recharges his superpowers.

Last spring, when Mason’s mother noticed he was having bowel problems, she took him to their family doctor who told her not to worry. But a month later, when he couldn’t urinate and his stomach was distended, his parents took him to the hospital, where he was diagnosed with rhabdomyosarcoma and his cancer treatment began. Radiation therapy was not an option because of his age and the location of the tumor. The hope was that chemotherapy would shrink the tumor enough to remove it surgically. In the meantime, while researching options on the Internet, his parents discovered proton therapy. A second opinion and more imaging at a larger hospital in Toronto found another mass, which took the possibility of surgery off the table. Doctors there agreed proton therapy was a good option, but there are no proton centers in Canada.  “The power of the Internet led us to MD Anderson in the USA,” Mason’s dad said. Leaving their jobs and home behind, the family moved to an apartment close to MD Anderson, where Mason had 30 proton treatments, Monday through Friday for six weeks. He loved the nurses at the center, who helped him build his superpowers. “We knew he would have questions about what was happening, and we wanted to say something positive but not lie,” his dad said. “It’s really helped a lot.”

Source : http://www2.mdanderson.org/cancerwise/2015/09/young-rhabdomyosarcoma-patient-polishes-his-superpowers.html

 

2-YEAR-OLD CELEBRATES COMPLETION OF PROTON THERAPY

Last Monday was a special day for Viktor Skaro and his family: the two-year-old boy rang a bell to signify the completion of his proton beam cancer therapy at Mayo Clinic.

Vito was diagnosed with a brain cancer when he was only 11 months old. The best way to treat his cancer was total brain radiation, but it would have resulted in mental deficits. Instead, Mayo Clinic offered the option of proton beam therapy, which is a more focused treatment and allows doctors to pinpoint the location of a tumor. Vito’s family said overall, Mayo Clinic made the therapy a good experience. “We know you’re scared, we’re going to take care of you and everyday they were happy and they played with Vito,” his mother said. “They made him smile and they made us smile and when I was really scared and nervous they helped walk us through everything so it’s been an amazing experience overall. They treated our whole family and not just Vito.” Now, Vito and his family will be headed to the University of Minnesota, where he will receive high-dose chemo treatments and stem cell therapy.

Source: http://www.kttc.com/story/30363788/2015/10/27/2-year-old-boy-celebrates-completion-of-proton-beam-therapy

 

A FAMILY’S BATTLE AGAINST AT/RT

When she was only 5 months old, Grace Skuches was diagnosed with AT/RT (atypical teratoid/rhabdoid tumor), an extremely rare and difficult to treat pediatric brain tumor.

After finding out about the tumor on Grace’s brain, surgery was immediately scheduled for the following day at St. Joseph’s Children’s Hospital in Paterson, New Jersey. Diagnosing the type of tumor was the best step toward understanding how to fight it. AT/RT is an extremely rare and aggressive tumor that spreads rapidly, but Grace was going into this battle with the best possible situation, as she had no other tumors or lesions, her cerebral spinal fluid was negative for cancer cells, the tumor was fully resected and she had stem cells available for harvest. The surgery on the tumor lasted approximately 5 hours and the doctor was able to cut out about 99% of it. Grace is now 10 months old and has had 4 brain surgeries, 4 rounds of chemotherapy, 1 stem cell harvest, and 2 stem cell rescues. She still has 1 more round of chemotherapy and stem cell rescue and proton therapy is planned to start in January. Grace has endured a few setbacks, like a subdural hematoma, shunt revision, and a PICC reinsertion, but she is a fighter! To help supplement income and pay for the costs that aren’t covered by the couple’s insurance, they were urged to set up a fundraising page in Grace’s honor. Friends, family and coworkers have donated money to the family and are able to read about Grace’s journey through a blog her parents maintain. To find out more about Grace, visit https://www.youcaring.com/grace-skuches-385173.

Source: http://allhands.coastguard.dodlive.mil/2015/09/15/saving-grace-a-coast-guard-familys-battle-against-atrt/