WEEKLY WEB REVIEW – WEEK 38

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is offering new treatment options and giving kids a chance.

CROWDFUNDING FOR BRAVE AMELIA

The parents of Amelia Elphee, a 4-year-old from West Yorkshire in the UK, are raising £3,000 to help fund overseas living expenses and outings to make her proton therapy treatments for a cancerous brain tumor a more positive experience.

“My daughter Amelia has just been diagnosed with a high grade neuroepithelial brain tumor with MN1 alterations. This is a rare kind of brain tumor with around 30 children affected in the whole of Europe. This means we have to travel overseas to receive Proton Therapy. We have been told that Proton Therapy is the best option for her rare type of tumor and that she is eligible to receive this treatment funded by the NHS. The funding covers travel, accommodation and treatment but does not cover meals, laundering, toiletries, comforts for Amelia whilst there and other living expenses. We are expected to be overseas for a total of 9 weeks, this is going to be a challenging time for us as we will be away from home comforts and the support of family / friends. This overseas treatment is an expense that we were unprepared for as Amelia has to start treatment as soon as possible we have not had time to save up. Any donation big or small would be extremely appreciated. I have decided to create a blog capturing every step of Amelia’s journey from beginning to end to raise awareness of childhood brain tumors and to provide comfort and support to others that are going through similar experiences. This blog will include diaries, photos, videos and resourceful information. Thank you for reading our story.”

Source: https://www.justgiving.com/crowdfunding/ameliaelphee

 

PROTON BEAMS DESTROY BRAIN TUMORS AND GIVE KIDS A CHANCE

While brain tumors are rarely diagnosed in children, they are the most common form of solid tumors found in those younger than 15. All together they represent 20% of childhood cancers.

When a brain tumor is found, treatment may include surgery, chemotherapy and/or radiation. Although survival is job one, it is important to consider the treatment’s long-term side effects. Radiation can, for example, damage healthy tissue and contribute to the development of different forms of cancer later in life. It’s important that the medical team weigh a treatment’s side effects and potential harm with its benefits. Children with brain tumors often are treated with radiation, either with standard (X-ray) radiation or proton therapy. Both types attack tumors by preventing cancer cells from dividing and growing. “The fundamental property of X-rays,” says Dr. Ramesh Rengan, the medical director of Seattle Cancer Care Alliance Proton Therapy Center, “is that they go in one side and they come out the other. That rule changes with protons. With protons, we have the ability to deliver a therapy that enters but does not exit. It stops where we want it to stop.” As a result, protons allow to spare vital healthy tissue surrounding the tumor, and thus have the potential to reduce both short and long-term side effects, which is particularly important in the treatment of children.

Source: https://www.seattletimes.com/sponsored/proton-beams-destroy-brain-tumors-and-give-kids-a-chance/?utm_source=RSS&utm_medium=Referral&utm_campaign=RSS_all

 

PROSTATE CANCER SURVIVOR SHARES INSIGHT

Shortly after turning 50, David Hennessy began monitoring his PSA levels, which may indicate prostate cancer when detected at higher levels. Now 2 years after the end of his treatment, David wants to stress the importance of regular screenings.

When David’s doctors noticed his PSA level rising, a biopsy confirmed prostate cancer. “The biopsy showed that I had cancer, and I am fortunate in that the cancer appeared to be confined and treatable after being caught early,” he said. After much research and seeking multiple opinions, David decided that proton therapy was the best option for him. Because of the treatment’s pinpoint accuracy, which can minimize damage to healthy tissue, men get the benefit of extremely precise tumor targeting with a lower risk for potential side effects. Proton therapy helps prostate cancer patients maintain their quality of life, which was a major component in David’s treatment decision. According to the American Cancer Society, 1 in 9 men will be diagnosed with prostate cancer in his lifetime. Men with early stage prostate cancer often experience little to no symptoms other than a rise in PSA. “When I found out I had cancer, I promised myself that I would spread the word that screening is so important. Most men are stubborn and feel bulletproof and won’t get their PSA tested. PSA is a simple, painless blood test. Tell your brothers, fathers, sons, uncles, friends to get checked.”

Source: https://www.texascenterforprotontherapy.com/patient-stories/david-hennessy

WEEKLY WEB REVIEW – WEEK 37

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping cancer kids in their battle against cancer, and their family to speak out during the Childhood Cancer Awareness month. 

TEEN ON CHARITY RUN AFTER BEATING CANCER 

Sam Varnam, a 17-year-old teen from Codnor in the UK, is taking on a 10-km obstacle course this month to raise funds for the charity that helped him through his cancer treatment. 

In February 2017, Sam was diagnosed with olfactory neuroblastoma, a cancer of the nasal cavity. He spent most of last year in hospital for chemotherapy and surgery before flying to Florida for proton beam therapy, all while doing his GCSEs at Heanor Gate Science College. Now working towards A-levels in media and psychology, Sam said: “It was a tough time for my whole family. We were worried, scared and didn’t know where to go when I was first diagnosed. “Then a friendly face approached us, a Teenage Cancer Trust support worker called Bex. She eased us into the whole process, calmed us down and made the hospital feel more like home.” Sam will run in the Wild Warrior event near Brailsford on Saturday, September 22, in aid of the Teenage Cancer Trust. It will mark the latest step in his recovery. Now in remission, Sam said: “Before I was diagnosed I was an outgoing, active sporty person and now I have finished my treatment I have reprised that role. I’ve always wanted to run an obstacle course, and after this shock to the system I have finally decided to do it.” He added: “It’s a brilliant opportunity to help give back to the charity that helped me out so much, so they can give the attention and care they gave me to every other teenager with cancer in the UK.”

Source: https://www.ripleyandheanornews.co.uk/news/codnor-teen-takes-on-wild-warrior-run-for-charity-after-beating-cancer-1-9348748

 

SECOND BRAIN TUMOR BATTLE 

Jaxon Dugger, an 8-year-old boy from Oklahoma who is battling a brain tumor for the second time, is still smiling despite the pain he’s endured since he was a toddler.

Jaxon was diagnosed when he was only two, after his parents noticed he was having trouble walking and he started falling. An MRI revealed a rare and dangerous brain tumor pressing on the part of his brain that controls motor functions, and further tests confirmed it was Ewing’s Sarcoma. For Jaxon, that meant surgery to remove the tumor followed by some of the strongest chemotherapy medications available. On top of that, he received 31 rounds of proton radiation at ProCure Proton Therapy Center. Jaxon experienced some of the harshest reactions to his treatment. He ballooned to three times his normal weight despite losing his appetite and finding it impossible to eat. He ended up in rehabilitation, learning to walk again, but even after all of that, Jaxon was still smiling. Unfortunately, this wasn’t the last bad news he and his family would receive. In 2015, an MRI revealed his tumor had returned and he’s been fighting it ever since. “He thinks and believes that this is something we can keep fighting, that he will eventually be cured,” said his doctor, shaking her head in amazement. His mom J’Cinda recalls the news the tumor had returned, “He said ‘Mom, don’t cry! I’ll beat it again!’” We could all learn something about love, endurance and hope from Jaxon.

Source: https://kfor.com/2018/09/11/oklahoma-boy-still-smiling-despite-battling-brain-tumor-for-the-second-time/

 

SPREADING AWARENESS ABOUT CHILDHOOD CANCER

The Lewis family from Fort Meade, Maryland, is spreading awareness about childhood cancer, after they received the news that their son Thomas was suffering from a brain tumor when he was only 6 years old.  

September is Childhood Cancer Awareness month, putting a spotlight on a disease that affects so many lives: each day 43 families in the US will receive the devastating news that their child has cancer. On March 28th, 2016, Amber and Derek Lewis took their son to the doctor after he had been complaining about headaches. They found a large mass in his brain and Thomas was diagnosed with a desmoplastic round cell tumor, a rare form of cancer that is usually found in the abdomen. From there Thomas’ battle with cancer began. “I had to go to the hospital,” he recalls. “Sometimes I had to go for two days or three.” After several rounds of chemotherapy and proton therapy, there was no evidence of the disease. And the Lewis family is holding on to every precious moment they can spend together. To help spread awareness, the Lewis family is going gold. They are participating in the Million Mile, a national challenge to walk, run or ride a million miles during the month of September hoping to help raise money to help other families and to help spread awareness that unfortunately, this could happen to anyone. The Million Mile is the largest childhood cancer awareness challenge in the nation. The money raised helps fund researchers so they can find better treatments and more cures for kids battling cancer.

Source: https://www.wmar2news.com/news/region/baltimore-city/fort-meade-family-goes-gold-to-help-spread-awareness-about-childhood-cancer

WEEKLY WEB REVIEW – WEEK 36

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping children with cancer overcome life-threatening challenges.  

HEADING TO HIGH SCHOOL AFTER CANCER 

Audrey Anderson, a 12-year-old girl from Australia who was diagnosed with a tumor at the center of her brain when she was only 5, is now a healthy young girl heading to high school next year.

When doctors found a tumor in Audrey’s brain, her mother Sue says it flipped their family’s perspective of life on its head. Their daughter would die if the tumor was left untreated, but her age and the cancer’s location meant that it would be a particularly fragile operation. “We had to pursue some safe-as-possible options to try and make sure that we could preserve her life as much as possible,” Sue’s mom said. They opted to have Audrey treated overseas using proton therapy. While the treatment is not yet available in Australia, it was the best option to minimize any long-term effects on Audrey’s health. “For young children’s brains it’s a much safer form of treatment,” Sue said. Audrey received treatments for 11 months, from March 2011 to February 2012 with the help of Kids’ Cancer Project, who gave the family an extra boost to stay strong. It’s 7 years on from Audrey’s diagnosis and her mom says she’s now a healthy 12-year-old heading into high school next year, which is a “big achievement”. Ms Anderson herself sits on the board of The Kids’ Cancer Project, which co-hosted an event at the Sydney Opera House to launch the first day of Childhood Cancer Awareness Month. “It’s about honoring children who have been diagnosed with cancer, children being treated and those who have sadly passed away,” she said.

Source: https://www.smh.com.au/national/you-re-not-alone-opera-house-goes-gold-to-honour-kids-with-cancer-20180901-p50163.html

 

RAISING £160,000 TO #BACKBILLY

Billy is 15-year-old young man who is fighting cancer for the third time in his life. His uncle is telling his story in the hope to raise £160.000 to fund proton therapy and treat his rare form of cancer. 

“Billy is a fighter. He’s already a walking miracle because he was diagnosed with a rare form of leukaemia when he was a small baby. Less than two years after treatment, the cancer returned and he underwent further chemo, radiotherapy, complex treatments and a bone marrow transplant using stem cells. Against all odds, Billy started school at 5 years old and hasn’t looked back. After they had been living by the hospital for so long, my sister and her family returned to normality, determined to put this horrendous ordeal behind them. So, we are devastated that only 10 years later another very different battle has begun as the aggressive treatment that saved his life has now caused another rare type of cancer: chondroblastic osteosarcoma in his face and eye socket. Specialist proton therapy in America is his only option for a cure. Please back Billy. It is his big chance to stop the tumor in its tracks, either by making it benign or small enough for specialist surgery to take place. His life is in front of him. Billy has beaten cancer before. Please help him to do it again.”

Source: https://www.justgiving.com/crowdfunding/backbilly

 

FUNDRAISER TO HELP SON BATTLE CANCER

Jacob Willett, a 22-month-old boy, was diagnosed with pelvic embryonal rhabdomyosarcoma in March. His parents are fundraising to help their son’s battle against this rare form of cancer.

In response to the cancer diagnosis, Jacob’s parents Mark and Ness Willett went on a fundraising drive to help support others in a similar position. But a change in the direction of Jacob’s treatment has meant the couple’s fundraising efforts have had to start all over again. Mark explained: “Jacob was approved to travel to Florida for NHS-funded proton beam therapy in May, but the treatment was cancelled the day before we were due to fly out. Jacob had been undergoing chemotherapy, and after 4 rounds of treatment he had a scan to see how the tumor was responding. The scan showed a 20% growth instead of any shrinkage. Everyone was shocked, including our consultant, who then explained that our treatment in Florida had to be cancelled as the tumor was now too big.”  Immediately after the cancellation, the couple began to fundraise again in the hope of funding the costly proton beam therapy themselves. However, Mark and Ness found out soon after that proton beam therapy was unlikely to be an option at all. With surgery also being ruled out due to the size and delicate location of the tumor, a course of radiotherapy was the only real option left. Jacob completed his radiotherapy at the end of August, after 28 doses under general anaesthetic every weekday morning. His chemo schedule continued alongside that treatment, with eight cycles completed in total. The family are now spending some much needed time at home, and waiting to see what comes next.

Source: https://www.blogpreston.co.uk/2018/09/preston-couple-fundraising-to-help-son-battle-rare-form-of-cancer/

WEEKLY WEB REVIEW – WEEK 35

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is offering hopeful alternatives to cancer patients from all around the world. 

PRAYERS ANSWERED FOR LITTLE EVIE

Evie Hughes, a 7-year-old schoolgirl from Wales in the UK who underwent brain surgery and months of pioneering treatment in America, has just returned home after being told her tumor has been successfully treated.

Evie was diagnosed with craniopharyngioma, a rare type of brain tumor that was pushing on her optic nerve, after her schoolteacher recommended that she go for an eye test. Her parents soon learned that their daughter needed proton therapy in the US, and managed to raise money thanks to a fundraising page and the generosity of their community. Now Evie has recovered her vision and has returned to Wales in June after enduring months of proton therapy treatments in Florida, a pioneering procedure that was not available in the UK. “We’ve had the best news,” her mother Heather said. “Now that the tumor has been zapped it is not showing signs of activity!”

Source: http://www.criccieth-today.co.uk/article.cfm?id=123647&headline=‘Best%20news’%20as%20prayers%20answered%20for%20Evie%2C%207&sectionIs=news&searchyear=2018

 

BECOMING FRIENDS DURING TREATMENT

Paul Horvath and Gene Muenchausen were strangers, but as they waited in the lobby of the Beaumont Proton Therapy Center, it didn’t take long for them to strike up a conversation. Despite some differences, they soon learned about their many similarities. 

Paul and Gene are about the same age, 74 and 73. They learned they were at the center to begin their proton therapy for cancer, and that they would conclude their treatments at about the same time. Monday through Friday for 6 weeks, the two met in the lobby, as Paul was being treated for prostate cancer and Gene for squamous cell cancer. Gene had received traditional X-ray treatments for his cancer, along with brachytherapy, and was pleased with his proton treatment plan and his physicians. Paul, a former steel worker, liked that there were few side effects from his proton treatments. “While undergoing therapy, you can maintain normal activities. I went fishing with my son-in-law on the Detroit River. And Gene rode his bike to the Proton Therapy Center most days. He was golfing, too.” Despite being treated for different types of cancer, they often compared their experiences, or as Gene said, “comparing notes.” Paul said he did a lot of research before deciding to make the long trip downstate for proton treatments. “It’s an individual decision. But, for me proton therapy is the way to go.  It’s state-of-the-art and high-tech,” he said. Near the end of their proton treatments, both men teamed up to express their thanks and gratitude to the entire staff. The two ceremoniously rang the end-of-treatment bell together. After 6 weeks, the pair celebrated their cancer survivorship and proton therapy experience.

Source: https://www.beaumont.org/health-wellness/news/cancer-survivors-develop-friendship-while-waiting-for-proton-treatments

 

BACK TO WORK RIGHT AFTER PT

Robert Ducan, a 64-year-old bus driver from Hornchurch in England, returned to work the day after he finished a 10-day course of proton therapy in the Czech Republic to treat his prostate cancer.  

Robert was diagnosed with prostate cancer last May after he began to feel a more frequent urge to visit the bathroom. He was given a PSA test, which measures the level of prostate-specific antigen in the blood. A high reading can indicate the presence of cancerous cells. “To start with my PSA was 6.1 but before long it had gone up to 8.1,” said Robert. “I was referred to the hospital and by then it was up to 13.1. I went to see a specialist who wanted to cut out my prostate completely.” Concerned about the risks, Robert looked for alternatives and discovered proton therapy. After travelling to Prague for blood tests and a MRI scan, he eventually underwent five fractions of treatment across 10 days. “You hear people in England talking about chemotherapy and other cancer treatments having a really tough, gruelling time, so that’s sort of what you expect. But I actually found proton therapy to be quite relaxing. It didn’t feel like I was having cancer treatment at all. There was no pain whatsoever and I would have my treatments in the morning and then I would spend my afternoons exploring Prague. I couldn’t believe how painless it was.” Robert’s PSA level is now down to 0.1 and he says he feels “much better”. “Being a bus driver is not like sitting at a desk, you can’t just nip to the toilet when you need to. I’ve now found a doctor who knows and understands proton therapy and I’ve just had my one year anniversary since treatment.”

Source: http://www.romfordrecorder.co.uk/news/hornchurch-bus-driver-pioneering-cancer-treatment-1-5666729