WEEKLY WEB REVIEW – WEEK 12

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is arousing generosity among communities from all over the world. 

RALLYING TO HELP FUND YOUNG BOY’S TREATMENT

Henry Crisp, an 8-year-old boy from the UK facing a second fight with cancer after the return of a brain tumor he had removed when he was only 10 months old, will soon head to the USA for proton therapy.

Henri’s first tumor was discovered when he was just 10 months old, in 2009. “He was falling asleep all the time although he was not a sleepy baby,” his mom recalls. “He was really poorly. He stopped eating solids and was only drinking milk. The most worrying signs were the moments he would ‘zone out’, and not respond to anything. He was just staring into space,” she said. “I didn’t have a clue what was wrong with him.” He had 3 operations and spent a month in the Intensive Care Unit, before he started chemotherapy. The tumor coming back was a “bolt from the blue”, after Henri had done “so well” over the past 6 years without chemotherapy. Luckily it was far smaller than the first tumor. This week, Henry’s family will find out where his treatment will take place, as they are waiting to see if there’s a vacancy at Jacksonville, Florida, or Oklahoma City. His treatment, flights and accommodation are funded by the National Health Service, but Henri still needs £10,000 to cover living expenses while he’s away. The people of Doncaster, Henry’s hometown, are rallying around the family to help them find the money. Henry’ mom has been touched by their generosity: “It’s surprised me how good people have been. I’ve had messages from people I don’t even know on Facebook, telling me they’ve organized this and that.” As for Henri, he has been amazingly brave during the harrowing time since the condition has returned.

Source: http://www.doncasterfreepress.co.uk/news/doncaster-rallies-to-help-fund-young-henri-s-cancer-treatment-in-the-united-states-1-8447350

 

9-YEAR-OLD NEEDING LIFESAVING TREATMENT

Amelia Brome, a 9-year-old from Ingol, England who has already lost sight in one eye due to a cancerous tumor in her brain, has been selected by the NHS to receive lifesaving proton therapy in the USA.

Amelia is currently undergoing chemotherapy and has just found out she qualifies for proton therapy, which is not yet available in the UK. Amelia’s mom Cheryl said: “The proton therapy treatment she needs is used instead of radiotherapy, the long term side effects are reduced and it has better results.” Cheryl works at Flame Urban Spa in Garstang Road, which has kindly set up a campaign to try and raise money to help with the family’s living expenses during their 3-month-trip in the USA, as the NHS only covers treatment and travel. The spa is hoping to raise a total of £10,000. “The support we have been receiving is overwhelming, especially from my workplace. They have gone above and beyond to help, and lots of clients have been asking for any way that they can help us too”, Cheryl said.  “Any donations, no matter how big or small, will be much appreciated.” If you would like to help with the fundraising campaign, you can donate online via the JustGiving Page.

Source: http://www.blogpreston.co.uk/2017/03/ingol-nine-year-old-cancer-patient-needs-lifesaving-treatment/

 

AVOIDING SIDE EFFECTS WITH PROTON THERAPY

Barry Hodge from Somerset, UK was devastated to be told he had prostate cancer shortly after his 70th birthday. But after some research, he went for proton therapy and is now cancer free.

When he was diagnosed, Barry was told he would need to undergo external photon radiotherapy and hormone therapy. Faced with a long list of possible side effects including incontinence, bowel problems, and loss of sexual function, he and his family started researching alternatives. “The after effects for radiotherapy and hormone therapy are really quite serious and I just thought ‘This isn’t for me’,” he said. “Thank God for the internet, because my wife and son did their research and found that proton therapy was particularly successful for this kind of cancer. They told me I could go to America, where the treatment would cost around £100,000, or I could to the Proton Therapy Centre in Prague, where it would cost around £30,000. “I was reluctant – I told them I had paid into the NHS all my life, so why should I pay for private? But I had to look at what my quality of life would be like afterwards.” Barry spoke to his wife and son and they decided to find the money and fly out to Prague in January 2016. Barry claims his decision to opt for proton therapy was not welcomed by his doctor: “He told me I’d be better off going out and buying myself a new car. He told me it was an absolute waste of money. In my view it’s the best thing I’ve ever done. It saved my life.” Barry had 21 treatment fractions in Prague over the course of a month with his family by his side. After 4 weeks, his doctors told him the tumor had disappeared.

Source: http://www.express.co.uk/life-style/health/782348/symptoms-prostate-cancer-tumour-treatment-urine

 

WEEKLY WEB REVIEW – WEEK 11

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is raising generosity among people from all over, and giving young cancer patients a new shot at life.  

FUNDRAISER FOR FORMER PUPIL’S CANCER TREATMENT

Grace Adeyemo, 12, was diagnosed with a brain tumor called craniopharyngioma last July. Her former primary school in Morden, UK are fundraising to pay for her to travel to America for specialist treatment.

Grace was diagnosed after she began to experience problems with her vision. She had a successful operation last December, but the next stage of her treatment involves six weeks of proton therapy at the University of Florida in Jacksonville, America, at a cost of around £10,000. Grace’s former head teacher visited her in hospital after her operation and has set up a JustGiving page to try and help her family fund the trip to America. Grace expressed her thanks to her former school and her family for supporting her since her diagnosis. She said: “My diagnosis of craniopharyngioma was initially very difficult to handle, but with time and support from the NHS staff and my family, I soon understood and came to terms with my condition. The surgery was successful and one of my high points in hospital was having my former head teacher and deputy head teacher visit me in St George’s Hospital.” She added: “The amount of love, support and donation is overwhelming. May God bless the local churches, mosques, businesses and individuals who have donated to support my upcoming proton therapy treatment. This experience has opened my eyes to the kindness of humanity and our community in Morden, which I’m grateful to be a part of.”

Source: http://www.suttonguardian.co.uk/news/15148722.Morden_primary_school_fundraising_to_pay_for_former_pupil_s_treatment_after_brain_tumour_diagnosis/

 

FUNDS BEING RAISED FOR EUAN’S BATTLE

Euan Fellows, a teenager from Arbroath, UK is fighting a rare type of cancer called Ewing’s sarcoma, which will need proton therapy treatment in the USA.

Euan was diagnosed on January 12 with an inoperable cancer in his skull, requiring 6 rounds of chemotherapy, then proton therapy in the USA. Four days later, Euan was back in Edinburgh being prepped for chemo, the first round of which started on the 24th. His mom Michelle said: “Euan has had to give up so much this year, he can no longer ski with Arbroath Ski Club, which he really enjoyed, he can’t play football or hang out with his friends at Friday night club. None of this seems to be bothering him – he speaks with his friends on social media and has friends round when he feels up to it. He’s doing so well and is blowing everyone away with his positivity. He is forever telling the nurses that it’s okay when they need to wake him up for medications, etc. He just paints a huge smile on and gets on with it. He’s a true inspiration to the whole family.” Euan has a Facebook page and a Crowdfunding page, set up by a family friend to help them cover the living costs abroad. “People’s generosity already has blown us all away,” Michelle said.

Source: http://www.arbroathherald.co.uk/news/health/funds-being-raised-for-euan-s-battle-1-4389164

 

ANGIE’S BRAIN TUMOR BATTLE

Angelina was diagnosed last December shortly after her third birthday, after her parents noticed she was having difficulty with her vision and an MRI revealed a life threatening brain tumor.

Angelina was diagnosed with craniopharyngioma, a rare illness that occurs in only 100 children a year. Doctors rapidly scheduled her for emergency surgery the next morning. The surgeon went in with the intention of removing or draining the tumor, but he was not able to remove any part of the tumor, which was connected to the optic nerves and the pituitary glands. On February 16th, Angelina begin  receiving proton therapy in San Diego, CA. On Thursday, February 23rd the doctors notified them that Angelina needed to be immediately transferred to Cincinnati Children’s Hospital in Ohio. She received treatment for a week and then returned to San Diego. Angelina is now receiving 6 weeks of radiation therapy in hopes of shrinking the brain tumor. Her parents said: “We don’t know what the future holds for Angie, but we do know that she is a strong, brave little girl.  For those of you who have asked what you can do to help, THANK YOU. If you feel so inclined to make a donation, your support will help cover the cost of medical expenses, travel back and forth for treatments, as well as lost income while away from work.”

Source: https://www.gofundme.com/angies-brain-tumor-battle

WEEKLY WEB REVIEW – WEEK 10

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

HIGH HOPES FOR 3-YEAR OLD WITH CANCER

3-year-old Payton was diagnosed with rhabdomyosarcoma after her parents thought she had stuck something up her nose: they took her to the paediatrician, who sent them to an ENT specialist.

“The ENT doctor did a surgery to remove a foreign object,” recalls Payton’s mom, Taylor. “And there was no foreign object. It was a tumor.” Payton’s parents learned their child had cancer the day after her third birthday. In the same conversation, the little girl’s doctor said he was sending her to St. Jude Children’s Research Hospital in Memphis, Tennessee. Payton’s cancer was called rhabdomyosarcoma, which affects soft tissue such as muscles. In Payton’s case, the cancer was in her sinus cavity. Doctors targeted the cancer with chemotherapy and proton therapy, as St. Jude is home to the world’s first proton therapy center solely for children. Proton therapy was the best radiation therapy for Payton to receive, but it wasn’t easy on her. She received 6 weeks of proton therapy, 5 days a week, and in order to stay still during the treatment, Payton was sedated each time. Her treatment is working, and she has just 12 more weeks of chemotherapy to go before she can return home. “I’m hopeful that we’ll see our sweet little Payton back to normal,” Taylor says.

 

LEO THE LION READY TO START PT IN THE US

March is Brain Tumor Awareness Month and, appropriately, 4-year-old Leo Bermejo from Spain is about to embark on what could be life-saving treatment in the States.

Doctors at the Oklahoma clinic have now completed their assessments with Leo and consultations with cancer experts on each side of the Atlantic. They have recommended 31 proton sessions, which will be given Monday to Friday from March 9, which means approximately 6 weeks of treatment. The consensus is that Leo needs full brain and spine proton therapy with a boost to the tumor bed. “The treatment needs to be aggressive to kill this beast,” his mom Karen said. Leo will be given a lower dose to the healthy brain and he will not be any worse than he is now. Karen added: ”The doses that we have discussed are the same doses that another child has had who had the closest condition I could find to Leo. I have been in contact with the mother of this child who also had weakness in one side and loss of speech but he is progressing and now goes to a normal school. This child is amazingly now three years in remission!” Meanwhile fundraising events for Leo’s campaign fund continue apace both in Spain and the UK. Members of a gym in Stockport have raised an amazing £19,000 for Leo. To give your support to the ongoing Leo the Lion fundraising campaign, visit www.gofundme.com/leothelion3.

Source: https://www.euroweeklynews.com/3.0.15/news/on-euro-weekly-news/costa-de-almeria/143719-cancer-boy-leo-the-lion-ready-to-start-proton-beam-therapy-in-the-usa

 

6-YEAR-OLD IN REMISSION FROM RMS

Garrett Clarke is an easygoing, kind-hearted and happy-go-lucky 6-year-old boy who battled a rare and rapidly growing cancer called rhabdomyosarcoma (RMS), which was pushing out of his right eye.

The Clarke family’s journey began in April of 2013. Two days before his birthday, Garrett’s parents first noticed something amiss. Diagnosed after several tests, the RMS was attached to the tear gland in his eye and was inoperable. On October 24th, after completing 24 weeks of chemotherapy and 5 weeks of proton therapy, Garrett’s scans were clean. Rounds of chemo helped destroy the tumor, while proton beam radiation, valued for its ability to target radiation precisely to the cancer and spare healthy surrounding tissues and organs, was used to destroy any residual cancer cells that remained. With any childhood cancer, explains Garrett’s paediatric radiation oncologist, proton therapy gives kids better odds of avoiding the long-term side effects of radiation treatment, including secondary cancers. Garrett’s parents said they’re grateful for how the staff at SCCA Proton Therapy worked with Garrett to find a way for him to avoid having to undergo anesthesia for his 25 proton treatments. Most 6-year-olds can’t hold still long enough for this precise treatment. But Garrett was able to show that he could, and his treatment team made special modifications to his immobilization mask to take advantage of this. They were able to further fine-tune the proton beam. “The doctors were impressed with him, and we are, too,” said his dad.

Source: http://proton-therapy.org/patient_stories/garrett-clarke/

WEEKLY WEB REVIEW – WEEK 9

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is giving hope to cancer patients with limited treatment options. 

PT FOR TEENAGER WITH EWING’S SARCOMA

Connor Wood, a 14-year-old boy who was diagnosed with a rare form of cancer before Christmas, is to fly to the US for potentially life-saving treatment. His friends and family are raising money to help pay for day-to-day living costs abroad.

Connor had always been a fit and healthy youngster who enjoyed sports until he started feeling poorly in October. He was diagnosed with Ewing’s Sarcoma after being rushed to the hospital when he fell ill at school. “I got a phone call from his school saying Connor was unwell, and was struggling to breathe,” his mom remembers. He was taken to hospital where he underwent a CT scan and it was discovered he had fluid on his lung. “It was on Monday, December 13 when I was told it was Ewing’s Sarcoma and the tumor had pressed on his lung, causing it to collapse.” Connor’s parents were told he would have to go to America for 3 months for proton therapy. “Connor has been really brave and brilliant. He is really missing not going to school. He undergoes intensive chemotherapy every three weeks,” his mom said. Following the chemotherapy, he will undergo surgery in April and is expected to travel to America in May. Now friends and family are rallying around the youngster helping to raise money to pay for their day-to-day living costs, while they are there. “Connor will undergo treatment for 12 months, so it is a long journey and then he will have lifetime monitoring.”

Source: http://www.theboltonnews.co.uk/news/15124774.APPEAL__Schoolboy_battling_cancer_needs_lifesaving_treatment_in_USA/

MIRACLE RECOVERY WITH PROTON THERAPY

Ashya King, a young brain cancer patient from the UK who was taken out of the hospital by his parents for proton therapy abroad in August 2014, sparking an international manhunt, is now cancer free and back to school.

Ashya’s parents took their son out of hospital and travelled to the Czech Republic for proton therapy in 2014, after NHS doctors said it would not work as Ashya was “too ill to go” and his medulloblastoma was not included on the NHS list of cancers that can be referred abroad for proton therapy. Ashya’s parents however concluded that the best option was proton therapy, and took him out of the hospital without the consent of his doctors, sparking an international manhunt that led to their arrest in Spain a few days later, where they were forced to spend several nights in prison. They were freed after a legal fight and flew Ashya to a private clinic in Prague for proton treatment. Now, nearly 3 years on, Ashya’s dad is delighted to announce that his son is cancer free and back to school with his friends. His doctor from the Prague’s proton therapy center said: “We are in a regular contact with Ashya King’s parents. According to the last news from them the boy is very well. In Spain, where he lives with his parents and other siblings, he goes to school every day, he continues in rehabilitation and goes to logopedist.”

Source: https://www.thesun.co.uk/news/2859927/ashya-king-cancer-free-and-back-at-school-after-proton-beam-therapy-brain-tumour-treatment-row-with-nhs/

 

GETTING THROUGH BRAIN SURGERY WITH A SONG

29-year-old Zack Zortman, formerly the lead singer of a local band, was diagnosed with a rare brain tumor last fall. After undergoing surgery to have it removed, he wrote and recorded a new song that will be released soon.

Zack had been the lead singer of York-based alternative pop band for 6 years, but as he sang on a Friday morning in late September, he wasn’t on stage, he was lying awake in an operating room, surrounded by a team of doctors. Just a few days prior, he had been diagnosed with a tumor on the left temporal lobe of his brain, and was told he needed to be awake for the majority of the 6-hour surgery to remove it. Singing helped him calm his nerves but also allowed doctors to avoid areas of the brain critical to speech during surgery. The procedure went well and 99% of the tumor was removed, but his brain was so swollen that for 3 days he could barely speak, let alone sing. A week later, he got the news he had feared and was diagnosed with anaplastic astrocytoma, a rare and malignant brain tumor. The cancer diagnosis put his life in perspective, and it got him thinking about the things that are most important to him in life: family, friends and, he realized, music. In between aggressive proton therapy and chemotherapy treatments, he started playing piano and singing again. At the beginning of March, about five months post-surgery, he released his first single as a solo artist. Zack received a clean MRI in early February, which means he’s cancer-free. But he still considers it a never-ending road. Brain cancer, in particular, can come back, he said, and there is no known cure. For now, he’s going to continue to live each day like he was meant to live.

Source: http://www.ydr.com/story/things-to-do/2017/03/01/after-battling-brain-tumor-york-singer-zachary-zortman-meant-live/97954658/