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 fight against their life-threatening disease. RAISING FUNDS FOR BODIE Bodie McNulty, a 2-year-old girl who needs proton therapy for her brain tumor, has been refused funding by the NHS. Her parents have launched a desperate appeal to fund the potentially life-saving treatment. Bodie started with symptoms of sickness and constant tiredness which rapidly progressed into her losing the ability to crawl, sit up or even support her own head. She was diagnosed with a cancerous ependymoma and cyst that filled a fifth of her skull in Christmas 2016 and since then underwent major brain surgery followed by 12 months of chemotherapy. The procedure removed much of the mass and her parents were preparing to travel to Florida for NHS-funded treatment for the small inoperable remainder left on her brain stem. Unfortunately, a recent MRI revealed that Bodie’s remaining tumor exceeds the size requirement for NHS treatment for proton therapy by just a few millimeters. Bodie’s parents said: “We are now faced with the agonizing choice of having to self-fund life-saving proton therapy, not currently available in the UK, or give her conventional photon radiotherapy, which can cause more long-term damage.” They are now desperately trying to raise £175,000 on JustGiving to fund proton treatment in Germany. Source: http://www.dailymail.co.uk/femail/article-5527771/Toddlers-tumour-EXCEEDS-size-requirement-NHS-funding.html BRAVE EVIE SET FOR PIONEERING THERAPY Evie Hughes, a schoolgirl from Pen Llyn in the UK who received life-saving brain surgery last October, is preparing to fly to the USA to begin pioneering proton therapy. Evie has spent the last few months battling a brain tumor, which was discovered last year by her optician, and which has left her permanently blind in one eye. Soon after her diagnosis, she was rushed to the hospital where she underwent emergency surgery to drain a cyst surrounding the tumor and relieve pressure on her brain. After rounds of chemotherapy to shrink the tumor, she will now travel to Jacksonville, Florida for pioneering proton therapy treatment. An online crowd-funding campaign was also set to help support the family during their stay in the US. Source: http://www.watoday.com.au/act-news/freyja-christiansen-due-home-to-canberra-on-thursday-after-australiafirst-surgery-to-remove-tumours-with-robots-20180314-h0xgio.html MUSIC MASTER RUNS MARATHON Ashley Grote, the Master of Music at Norwich Cathedral, will be running the London Marathon in aid of Great Ormond Street Hospital Children’s Charity, motivated by the ongoing treatment his daughter is receiving for a rare brain tumor. In June 2014, Ashley’s daughter Emily was diagnosed with a rare brain tumor known as a craniopharygioma. She underwent two long and difficult operations at Great Ormond Street Hospital (GOSH), followed by a 6-week course of Proton beam therapy in Jacksonville, Florida. Since then, she has had further surgery to improve blood flow in her brain after suffering from two strokes in March 2016. Thanks to the world-class treatment and outstanding care she has received at Great Ormond Street, she has made remarkable progress, overcoming each of these difficult hurdles with strength and determination. Ashley said, “As her parents, it doesn’t bear thinking about where we would be now without the treatment and support that Emily has had at GOSH, and we owe them a great debt of gratitude. Great Ormond Street Hospital Children’s Charity does such important work raising money which has helped our family and countless others.” Over the last 4 years, Ashley has raised over £56,ooo for the charity. https://www.networknorwich.co.uk/Articles/518033/Network_Norwich_and_Norfolk/People/Norwich_cathedral_music_master_runs_marathon.aspx
Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping youngsters with life-threatening tumors fight for their future.
CELEBRATING BRAVE ELSA’S BIRTHDAY
Elsa McBurney, a young girl from the UK who was diagnosed with spinal cancer last year, just celebrated her 8th birthday at a huge party with her local community on Sunday.
It has been a difficult twelve months for Elsa: since she was diagnosed with cancer in her spine a year ago, she has undergone chemotherapy, surgery and travelled to America for proton beam therapy. Her family and friends wanted to ensure this birthday would be one to remember and weeks of planning have gone in to marking Elsa turning eight. Despite far from perfect weather, the party was a great success. Her mom Leslie said: “Elsa had a fantastic day from start to finish. We never expected the crowds we got in a million years.”
APPEAL FOR CHARLOTTE’S TREATMENT
Charlotte Taylor, a 19-year-old from England, needs proton therapy to treat her inoperable brain tumor. Her neighbor has raised more than £20,000 in just two weeks to fund the pioneering treatment in a bid to prolong her life.
Charlotte was diagnosed with a brain tumor after suffering from headaches for a few months. “She had been complaining of headaches since Christmas,” her dad sad. “She went to the doctors but two weeks later the headaches were still there, and she had started to struggle reading and recognizing numbers.” Her optician noticed her optic nerves were swollen in both eyes and rushed her to the emergency room, where a scan revealed she had a large cancerous tumor on her brain. Charlotte, who had just started studying for a degree in nursing, is now struggling with her vision and memory, and has a weakness on her right side. Doctors have ruled out surgery, but she is undergoing chemo and radiotherapy, while her family and boyfriend-of-5-years explore alternative treatments. “We’re researching other options like proton therapy or immunotherapy, but they’re not available on the NHS,” said her dad. “Family, friends and friends-of-friends have been doing their own fundraisers and donating online. The amount they’ve raised is astonishing.” Kate Cotterill, who lived next to the Taylors, launched the online fundraising appeal after watching her dad suffer from a similar condition. “Anyone with experience of brain tumors knows how unpredictable and aggressive they can be.” Kate added: “I wanted to channel my sadness into something productive. In less than a week we raised more than £16,000, which is just amazing. Every penny will go towards Charlotte’s treatment and making special memories.”
JETTING OFF TO USA FOR PROTON THERAPY
Marcus Towers, a 7-year-old from the UK who was diagnosed with a brain tumor, has been sent to America for potentially life-saving proton therapy after friends and well-wishers raised £20,000.
Marcus was just two when he was diagnosed with brain cancer. After five years of treatment, including chemotherapy, he now needs proton therapy. The NHS is paying for the treatment, although his family, including his twin brother Finley, needed to fundraise to cover the cost of moving to the States for the 10-week course. The £11,000 trip has been possible due to the kindness of strangers. His mom Tina said: “I can’t say a big enough thank you to everyone for their support.” Marcus will be scanned this week, after which experts will decide exactly what is needed. Tina is confident though that her son will come out of it with a smile on his face. “I think he doesn’t know what to expect, but I’m only telling him little bits,” she admitted. “I don’t want him to be nervous when he gets there. I’m nervous too, and I feel like if this treatment doesn’t work then where do you go from there – but there is a really good chance and it will and I’m hopeful we should get the result we want.”
Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping reunite families and make plans for the future.
DAUGHTERS TO VISIT THEIR MOM DURING TREATMENT
Lindsey Morton, a 33-year-old mom with spinal cancer, will fly to Florida for specialist proton therapy funded by the NHS. Family, friends, and strangers also raised £5,000 in 24 hours so her two girls can visit her during life-saving treatment in America.
Lindsey, from Manchester in the UK, was diagnosed with a malignant tumor on her spine last August, just eight months after giving birth to her second daughter. She also had cancer as a child and lost a kidney and part of her bowels due to a malignant Wilms tumor. Lindsey has had two operations on her spine, but due to her medical history and having only one kidney, her doctors have decided that regular treatments of radiotherapy and chemotherapy are too risky. The NHS will thus fund proton treatment in the US, a specialist form of radiotherapy that spares healthy tissue, which is not yet available in the UK. Lindsey will fly to the States later this year but fears being apart from her daughters, Harper, aged one, and Lexie, five, for nine weeks. However a crowdfunding appeal launched by a friend raised £5,700 in just one day, meaning the children, and her partner, Ben Jackson, will be able to go and see her during her treatment. Lindsey’s mom will also go with her to America during her treatment. “I am very grateful to be having the treatment – but will be so far away from home. Having my daughters, Ben, and dad come out will be such a boost.”
ASHYA KING’S AMAZING RECOVERY
A young boy with a brain tumor whose parents sparked a Europe-wide manhunt when they whisked him away from hospital has shown the remarkable recovery he’s making thanks to proton therapy.
Ashya was just 5 back in 2014 when his parents removed him from the ward at Southampton Hospital because they wanted him to have specialist proton therapy even if doctors had ruled that Ashya was too ill to travel. Such therapy was only recommended in around 1% of cancers at the time and was also deemed hugely expensive. The Kings were found in Spain a week later, and the mom and dad were arrested. Later that year, the High Court ruled Ashya should go to Prague for the proton treatment. Last year Mr King told how he was now at school and “cancer free”: “He is not completely out of the woods but he is getting there. His brain has had a big trauma and is now rewiring itself.” Ashya recently said in a TV interview that he enjoys riding his bike, playing with Lego and watching films, including his favourites, the Narnia series. On the back of Aysha’s case, two new Proton Therapy Centers are due to be opened by the NHS in the UK this year: one in Manchester and another in London.
THROAT CANCER SURVIVOR
In September 2015, Chuck Caldwell’s throat began to bother him during a trip in Europe. When he went to see his doctor in his hometown of Houston, he informed him he could possibly have throat cancer.
Chuck’s cancer was confirmed in January 2016, and the recommended treatment plan was chemotherapy and radiation. Chuck opted for proton therapy, which was able to precisely target his tumor while sparing nearby healthy tissue, thus offering reduced side effects compared to traditional radiation. Side effects that can be reduced with proton therapy for head & neck cancer include loss of taste, damage to salivary glands, fatigue and nausea. For Chuck, the worst part of his treatment was losing his sense of taste. “When I tried eating my favorite foods like steak and fried chicken, it was like eating my couch or pillows,” he recalls. As a result, Chuck dropped about 70 pounds. However, losing weight turned out to be good for him. “The good thing is that I unintentionally lost weight which helped me breathe much more easily,” he said. Chuck started his proton therapy in February 2016. He completed a total of 36 total treatments over the course of about 7 weeks. Despite all the health obstacles, Chuck considers himself fortunate. Proton therapy improved his quality of life during and after cancer treatment. Now, he is back to golfing with his wife of 33 years.
Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping patients from all over the world in their fight against cancer.
FIGHTING COLON CANCER WITH LOVE
Tom Halford and Alison Stem’s first years of marriage were tested by Tom’s colon cancer diagnosis, but their journey has only strengthened their love and inspired a community of support from those around them.
During their first years of marriage, Tom was diagnosed with colon cancer that had spread to two of his lymph nodes, the same disease his father had passed away from. “It was a shock to our system, shifting gears from being newlyweds who wanted to start a family to researching cancer centers,” said Tom. “We knew we were going to have to be aggressive in Tom’s treatment. And through my research I learned that proton over regular radiation would give him the greatest chance at beating his cancer, and allow a good quality of life afterwards,” shared Alison. Because younger people are not typically affected by colon cancer, insurance does not currently cover proton therapy for the disease, but Tom’s doctors appealed directly to his insurance company’s medical board to argue for the benefits of proton, particularly in terms of long-term effects of treatment on such a young person. Their initial refusal was overturned and they agreed to pay for proton in full, the first time ever for colon cancer. Now over a year after his diagnosis, Tom and Alison are officially seeing the light at the end of the tunnel. Tom has been cancer-free since September 3rd, and with his major surgeries, chemotherapy, and proton treatments behind him, they are now able to finally look ahead and focus on married life and starting a family.
BACK AT SCHOOL AFTER PROTON THERAPY
For Anayed Perez-Araica, a 12-year-old girl from Miami suffering from a brain tumor, the timing could not have been better when Miami Cancer Institute opened its Proton Therapy Center last year.
Anayed has a benign brain tumor called a craniopharyngioma, and while this type of tumor typically does not spread elsewhere in the body, it can be locally aggressive and cause problems if it is not controlled due to its central location in the brain. As proton therapy has the ability to deliver the radiation dose solely to the tumor and spare surrounding healthy tissue, it has the potential to stop Anayed’s tumor from growing, enabling her to grow up and lead a relatively normal life without the side effects of conventional radiation therapy. “At the hospital, doctors told me that Anayed had to go to Jacksonville for the proton treatment,” her mom recalls. The 30 treatments would have required the family to be away from their Miami home for a month. Then they learned about the opening of the Proton Therapy Center at Miami Cancer Institute. “This was joyous news for all of us because she could be with us every day.” Anayed is now back at school, studying technology with the goal of becoming an engineer. Her advice to other kids facing cancer treatment? “I’d tell them not to be afraid,” she says. “I always have a smile on me because I don’t think about it. I just live life, seeing what happens.”
PAROTID CANCER PATIENT CURED BY PT
Phyllis-Ann Walsh, a woman from New York who was diagnosed with parotid cancer earlier this year, is spreading the word about the cancer treatment that got her back on her feet in a matter of months.
Last May, Phyllis-Ann was diagnosed with cancer of the parotid, a salivary gland located in the neck, and was told she would need surgery and radiation therapy as part of her treatment plan. As she had heard about negative side effects of traditional radiation treatment on the neck such as loss of speech, difficulty swallowing and sores in the mouth, she chose to travel to Somerset, New Jersey to the ProCure proton therapy center following surgery in July. After doing some research, Phyllis-Ann had indeed learned that proton therapy was a more targeted form of radiation that does less harm to surrounding healthy tissue. As a result, she says she had more energy following treatment and less need for painkillers. Phyllis-Ann owns a farm where she and her husband raise golden retriever hunting dogs, show horses, and rescue donkeys. She is also a licensed psychotherapist specializing in children with attachment disorder. “When I got home, I was able to pick up my life. I got home on a Saturday and started seeing my clients on Monday. It really interfered very little. And I have a very full life,” she said. Phyllis-Ann had 33 proton treatments between August and October and a recent scan showed her to be cancer free.