WEEKLY WEB REVIEW – WEEK 4

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping patients of all ages fight the battle of their life.

FAMILY MAN FACING UNEXPECTED BATTLE FOR LIFE

Nathan Meyer is a 31-year-old unassuming young husband and dad from the UK who thought he had his whole life ahead of him. But last November, he received unexpected news.

“I had a seizure the Monday before Thanksgiving when I was at work. I had never had a seizure before in my life,” Nathan recalls. “I went unconscious, I woke up and they had me on a stretcher and took me out to an ambulance, took me over to Oxford, did some CT’s, MRI’s and stuff and found this tumor in my brain.” Since then, Nathan has been dealing with the faceless bureaucracy of health care providers. He’s appealing a decision his insurance carrier made to deny him proton therapy in favor of less expensive but more invasive radiotherapy. “That’s where our lives’ pretty much been over the last month dealing with hospitals and insurance companies,” Nathan explained. “My wife’s been pretty much on the phone constantly taking care of all of that.” Both are upbeat despite the insurance provider’s denial for proton therapy, but are hopeful the appeals process will reverse that decision. They have also learned how many close friends they have when a group of them started an effort to raise money and awareness for Nathan’s plight, and established an account at Franklin County National Bank to ease the financial treatment burden and started a GoFundMe campaign to help raise funds for Nathan’s treatment. In one month, $12,660 has been raised with a goal of $75,000. If you wish to donate and help Nathan, visit https://www.gofundme.com/VictoriousNathan.

Source: http://www.newsexaminer.com/news/an-unexpected-battle-for-life/article_f498055b-e73c-53fa-bf43-26e301f51098.html

 

MOMS DEPLORING LACK OF PROTON CENTERS

Rosalie Barnes, the mother of a 13-year-old boy who was treated successfully by proton therapy in the United States 8 years ago, is deploring the lack of widely available proton therapy centers in the UK.

In an interview for the BBC, Rosalie said that her teenage son Alex benefited from proton therapy in the US when he was only 5, after his family raised the money by themselves, as doctors in England told them it was expensive and unproven. The NHS have since then decided to back the therapy, building 2 therapy centers of £250 million, which are not open yet. Rosalie said: “I was told that in 2013-14 our new proton centers would be open in this country and I was absolutely thrilled. But here we are in 2017 and no sign of any proton centers yet. What upsets me is how many families have lost children because they didn’t have proton therapy. How many adults have died because they didn’t have it?” Patients who want proton therapy can sometimes receive treatment from the NHS, if the health service pays for them to go abroad. For example, 17-year-old Bradley Marshall was given NHS funding to go to the US for therapy when he was 10. His mother, Dawn Marshall, said: “For the parents whose children are refused the treatment, it is soul-destroying. They must be feeling really vulnerable.” Since 2008, 950 British patients have qualified for treatment, costing around £100,000 each. The first proton therapy treatment center in the UK is due to open in 2018 at Christie’s Hospital in Manchester.

Source: http://www.aol.co.uk/living/2017/01/14/mother-criticises-lack-of-proton-therapy-centres/

 

PROTON THERAPY FOR BRAIN CANCER

Troy Witt, a 65-year-old self-proclaimed “country boy” from London, UK, loves his family, fishing, woodworking and riding on his tractor. But all of these activities have been put on hold since spring 2016.

Last year, Troy went to his optometrist for a watery eye.  “He must have seen something in the back of my eye because he sent me for a CT scan,” he said. Unfortunately, doctors found a brain tumor the size of a fist. “Besides my watery eye, I never had any symptoms. I was scheduled for surgery the next day,” said Troy, adding that he underwent two additional surgeries, to repair the area where the tumor was removed. But during follow up appointments, a remaining piece of tumor was found, along with other small cancerous spots surrounding the area, which made him a candidate for proton treatment. Troy thus became one of the first patients to be treated at the Cincinnati Children’s Hospital Medical Center/UC Health Proton Therapy Center, which officially opened in August 2016 and is only one of 25 in the country. He received daily treatments for 7 weeks beginning on Oct. 5th, and completed his last treatment on Nov. 21st. With treatment behind him, Troy is simply looking forward to getting back to the things he loves. “I’m just looking forward to being pure old me again, playing Frisbee with my dog, spending my time with my little wife of 50 years, planting a garden in the spring,” he says. “The Lord has made this easier for me, and my family and friends have been with me every step of the way. I’m a blessed man.”

Source: http://ucbraintumorcenter.com/hope-stories/troys-story-proton-therapy-for-brain-cancer/

WEEKLY WEB REVIEW – WEEK 3

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping patients of all ages fight against cancer.

MOM WITH BONE CANCER

Nicola White, a 32-year-old mother-of-two from the UK, was given just 2 years to live. The thought of leaving her children breaks her heart, but her only hope is state-of-the-art proton therapy, costing £75,000.

Nicola was first diagnosed with a rare type of bone cancer called osteosarcoma in her right leg when she was just 15-years-old. She underwent chemotherapy and had surgery to remove part of her femur and tibia bone, which was replaced with a prosthetic knee and bone. But 5 years ago, after having her two children, Owen, who is now 12, and 8-year-old Ava, Nicola had to have an emergency amputation after her leg became infected, which led to septicaemia. The osteosarcoma then returned in her lung, and last year she was given the devastating news that the tumor was inoperable and she had only two years to live. “I was just thinking of my children. I can’t imagine leaving them when they need me, they are 100% dependent on me and that’s what breaks my heart, for me not to be around for them,” she said. Nicola has been told proton therapy is the only solution to prolonging her life but that a request by her doctor for NHS funding of the therapy was refused. Now she is hoping to raise at least £75,000 to cover the cost of treatment at a clinic in Europe or America. “The doctor said I should have proton therapy within the next 6 weeks,” Nicola said. “The longer I leave it the harder it will be to resolve. “People have already started to donate and the thought of people doing that for me is just overwhelming. I have no words to describe that feeling.”

Source: http://www.walesonline.co.uk/news/wales-news/mum-diagnosed-bone-cancer-teenager-12460750

 

HARRY’S BATTLE AGAINST CANCER

Uchenna Ikejjani, a former chart topping Nigerian singer better known as Carol Jiani, has issued an appeal for funds to secure life-saving treatment for her 17-year-old son Harry, who is being treated in London for a cancer at the base of his brain.

Uchenna, a widower and mother of 4 children, has spent the last six months in and out of hospital with Harry. “This is the biggest battle of my life fighting for my son to beat this cancer,” she says. “Words cannot express the pain that I felt when doctors confirmed that he had an aggressive rare form of cancer. According to the BBC, in 2008 only 201 cases of the disease had been recorded worldwide in the preceding two decades.” Earlier this year, Harry underwent surgery to remove the tumor but a recent CT scan and biopsy revealed the extremely rare form of cancer was still present. Uchenna has been told that proton therapy is his best chance of survival, but the state-of-the-art treatment it is not yet available in the UK. Harry will thus need to move to the US to receive treatment at the University of Florida Health Proton Therapy Institute, where he’ll have to stay for about 3 months. Uchenna is appealing for funds to pay for travel, medical fees and accommodation costs. Harry said he likes to think positively, and does not listen to everything doctors say. He said, “I’m a very strong believer in mind over matter. Statistics are just numbers. Humans are so much more than numbers.” If you want to help Harry and his mom, please visit www.gofundme.com/22uagd8

Source: http://www.nigerianwatch.com/princess-inspired-by-courageous-harrys-battle-to-beat-cancer/

 

NEW LEASE OF LIFE AFTER CANCER DIAGNOSIS

When John O’Kelly, a 66-year-old grandfather-of three, was hit with the devastating news he had prostate cancer, his world was turned upside down. 

John was initially diagnosed after experiencing a sudden and frequent need to visit the bathroom. As his tumor was in the early stages and had not spread outside the prostate, his doctors advised active surveillance. However, through 18 months of so-called ‘watchful waiting’, John saw his PSA levels steadily rising. He said: “I wasn’t happy. I just thought ‘This isn’t me’, I’m not used to sitting and doing nothing. I thought it was only going to go one way, and by then I might have no option but to have fairly aggressive treatments, which I did not want to do. I had already read about how surgery could leave you with incontinence.” Determined to carry on living life to the full, John decided to go against the advice of NHS doctors. John, who is originally from Ireland, spoke to doctors in the UK who gave him the green light to travel to the Czech Republic for cutting-edge proton therapy. He said: “I went back to the specialist with 25 questions and then made a decision for me. Over Christmas I decided to go to Prague and I travelled out in February. They were exceptional. I had an examination and thought there might be a six month waiting list. I came straight back to the UK to arrange things and I was back in Prague within a week. They were reassuring and very professional and put me at ease from the word go.” John was treated with 5 hyper fractions over a 2-week period, going in for treatment every other day. He is now free of cancer and has regular PSA tests to monitor his prostate.

Source: http://www.peterboroughtoday.co.uk/news/health/new-treatment-gives-john-new-lease-of-life-after-cancer-diagnosis-1-7783384

WEEKLY WEB REVIEW – WEEK 2

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping young patients in their fight against cancer and giving hope to their families.

COMING HOME AFTER CANCER TREATMENT IN THE US

Logan Sellers, an 8-year-old boy from the UK who spent 2 months in Florida, USA with his dad and twin sister to get proton therapy for an aggressive tumor behind his right eye, is now coming home.

After 2 months of treatment, Logan can finally come home now that he has “graduated” from the UF Health Proton Therapy Institute in Florida and rung the bells to celebrate the completion of his proton therapy treatment. It will be a further 6 to 8 weeks until his family finds out exactly what effect the treatment has had on his rhabdomyosarcoma. His 37-year-old father said: “It’s such a proud emotional time to stand next to my brave little boy. Jacksonville has been home for the past 10 weeks, the people and teams working here have done a marvellous job of helping us settle in and have made us feel part of their special family. This will always be our home away from home. Logan’s question after an hour of tears and emotion was ‘can’t we stay here? We can live here!’ After explaining his treatment isn’t over yet, that his big medicine (chemotherapy) will carry on for a while back in the UK, he made me pinky promise that one day he can come back here to live. A massive drop in the ocean to Logan’s battle is now behind us, in six to eight weeks we will find out exactly what effect this has had on his tumor.” Logan will restart his chemotherapy on Tuesday, just two days after they arrive back in the UK.

Source: http://www.dailypost.co.uk/news/north-wales-news/brave-logan-coming-home-bangor-12423331

 

MOM AND SON WITH RARE TUMORS GIVEN THE ALL CLEAR

Gemma Edgar and her two-year-old son Noah, who have both been battling rare tumors, were given the all clear. The British family is now looking forward to the new year with new hope.

Last January, Noah was diagnosed with a rare malignant tumor of the eye called retinoblastoma. He underwent surgery to have his eye removed, followed by chemotherapy and proton beam therapy in America in a bid to kill any remaining cancerous cells. Since then, scans have found no evidence of cancer. It is the second glint of hope for the family, as Gemma, a former paediatric nurse, was also diagnosed with a brain tumor in October 2014. Surgeons removed as much of the aggressive tumor as they could and she underwent six weeks of radiotherapy. She has regular MRI scans to check for signs of regrowth but her last one was clear. “It was a crazy and surreal year”, Gemma said. “At the start, when Noah was diagnosed, I thought it was going to be a never ending nightmare but we got through it. We spent about 15 weeks of it in hospitals either in Cambridge, Colchester, London or America, and although he was ill, Noah did not let anything stop him. Since he finished his chemotherapy, he has been absolutely fantastic.” Noah had regular follow up MRI scans, which showed no evidence of the disease. He will have to have scans for a couple of years and have his prosthetic eye changed as he grows. The family will also have to go back to the University Of Florida Health Proton Therapy Institute in America where Noah underwent proton therapy for a check up. Gemma said: “This time it will be our family holiday and hopefully Noah can enjoy it this time and will be able to go swimming and do all the things a little boy would want to do.”

Source: http://www.maldonandburnhamstandard.co.uk/news/countywide/15002419.Family_look_forward_to_new_year_with_new_hope_cancer_has_been_beaten/

 

FORMER APPRENTICE BATTLING RARE CANCER

Laura Barry, a 24-year-old former apprentice jockey, has endured a challenging year after being diagnosed with cancer. Her best friend Gemma Tutty is leading a fundraising drive to aid her cause.

Laura started suffering pain in her left leg last year, and was diagnosed with a rare and aggressive form of cancer that attacks the nerve ducts. Although that tumor was treated, a second tumour was discovered last November. Laura has been left with paralysis in her left leg from the hip downwards, and with no chemotherapy specific to her cancer available, different treatments are being considered, including proton beam therapy. Laura and Gemma became best friends when riding round the world together for the HH Sheikh Fatima Bint Mubarak World Apprentice Series. Gemma said: “The Injured Jockeys Fund have been brilliant and paid for all her medical fees but there’s only so much they can do. Laura needs things like an adaptive car, a chair lift and wet room at home. You never hear her moaning about it, she’s always cracking jokes and having a laugh. It’s never depressing to go see her, always a pleasure.” Laura’s gofundme page went live on Monday evening, with jump jockey Brian Hughes pledging £1,000 to start the fund. At 5.30pm on Tuesday, the fund had already passed £18,000 thanks in no small part to a £5,000 donation by Richard Fahey and the team at Musley Bank. Donations can be made at https://www.gofundme.com/laurabarry

Source: http://www.racingpost.com/news/horse-racing/former-apprentice-laura-barry-battling-rare-cancer/2225989/#newsArchiveTabs=last7DaysNews

WEEKLY WEB REVIEW – WEEK 1

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping young patients from all over the world fight against cancer and giving hope to their families.

ALL SMILES AFTER US TREATMENT

Edric Ho from Australia looks like a happy healthy 4-year-old with his beaming smile and cheeky personality, but back in 2014 when he was only 16 months old, he was diagnosed with a rare and aggressive brain tumor. 

Back then, doctors told his parents that pioneering proton therapy in the US was his best hope of survival, but would cost $200,000. With no government assistance available, Edwin and Rochelle Ho remortgaged their home and borrowed from family and friends to travel with their sick son to Florida in May 2014. The treatment saved Edric’s life, who has been in remission for 2 years. His parents reflected on the journey this week to mark the milestone. “We cried,” Mr Ho said. “We got on our knees and prayed and asked why. We just hoped for the best. Just to save Edric, but also to see others who were in the same predicament as us and also get strength from others who are going on the same journey as us, it was a real help having a network of people together.” Mrs Ho said their little boy was happy despite lingering side effects from his cancer battle. “He has hearing loss, he has speech delay, he has delay in motor skills, but he is happy,” she said. “He’s living here enjoying life.” The Federal Government eventually agreed to reimburse the family for the cost of the treatment. The couple said they hope acquiring funding for overseas cancer treatments will become easier, but for now they are focusing on their son’s future, which includes MRI scans every 4 months.

Source: https://thewest.com.au/news/wa/little-edric-all-smiles-after-us-treatment-ng-b88343990z

 

FUNDRAISING CAMPAIGN FOR BOY WITH BRAIN TUMOR

Romayne Hynes, a 5-year-old from the UK, needs proton therapy for his rare brain tumor. A campaign has begun to raise cash for him to go to America and get the potentially life-saving treatment.

Romayne was diagnosed last summer with craniopharyngioma, a rare tumor with cysts growing on his brain, restricting the flow of liquids and causing serious side effects, including drastic weight gain. The tumor is located in an extremely delicate part of the brain near the pituitary gland, which is difficult to operate on, which is why he needs targeted proton therapy. PT is not yet available in this country, and even if a new center in Shinfield could soon offer it, Romayne’s treatment cannot wait. His mom wants to raise £5,000 to take him and his 2-week-old brother Zaviyan to America and, after the treatment, would like to be joined by her elder son Taraya. Romayne’s family have set up a justgiving page and are hoping kind-hearted people will help them send him to the US. His mom said: “We are hoping to raise the money to take him to Florida for this proton beam treatment. You can’t get it in this country and it’s the latest treatment and is apparently much more effective than radiotherapy. We’re hoping to go for two months, and then I’m hoping I can fly his other brother out so I can take them to Disney World after the treatment is over. There’s a long way to go but we hope we don’t lose our wonderful son and brother.” To make a donation, visit www.justgiving.com/crowdfunding/amina-parris.

Source: http://www.getreading.co.uk/news/reading-berkshire-news/fundraising-campaign-launched-tilehurst-boy-12407169

 

4-YEAR-OLD NEEDS TREATMENT AGAIN

Alexander Vinson, 4-year-old, received proton therapy for a brain tumor in December 2015. Now seven months after receiving the all clear from his doctors, he needs to start treatment again as a scan revealed a growth on his spine.

Alexander travelled to America with his parents in December 2015 to receive proton beam therapy for a brain tumor, but one year on, Alexander’s parents have broken the news on Facebook that he will be starting treatment again, as a recent scan showed a growth on his spine. Alexander’s mom Raluca said, “This will come as a shock, like it shocked us, the last scan results for Alexander had shown a growth in his spine. We are devastated. It’s awful, it’s heartbreaking and unbelievably unfair. The doctors aren’t sure whether the growth on his spine is the same that was in his head so he’s had a biopsy and we will wait and see. They did say that if the tumor came back, it could appear anywhere in his body so they think it could perhaps be the same. He’s had a small amount of radiotherapy and depending on what the results of the biopsy say, we will discuss the options with the doctors as to how we go forward with treatment. We are taking each day as it comes as we don’t know what is around the corner. We’re trying to make the most of the time we have. Alexander is quite happy in himself. We recently celebrated his 4th birthday which was lovely. We had friends and family with us and he enjoyed himself. The support from everyone has been lovely and we are very thankful. We really couldn’t do it without our friends and family.”

Source: http://www.whitehorsenews.co.uk/blog/2017/01/04/alexander-vinson-to-start-treatment-again-after-results-show-a-growth-on-his-spine/