Weekly Web Review – Week 17

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is helping children and teenagers fight against cancer, and raising awareness and generosity in families, friends and even total strangers.

 Severely-ill toddler on the road to recovery after PT


2-year-old Freya Bevan, who was diagnosed with a Primitive Neuroectodermal Tumor (PNET) in her brain last year, has spent the past seven weeks undergoing proton therapy in the US, after money was raised to fund her pioneering treatment.

Freya was diagnosed last May and underwent her first operation at the University Hospital of Wales in Cardiff. She then underwent four rounds of chemotherapy but on September 11, she needed a second operation and suffered a mini-stroke the following day. She has also suffered seizures that brought her to the brink of death. At one point, doctors told Freya’s parents that she would need proton therapy, and they felt the Welsh NHS had handed their daughter “a death sentence” when they refused to fund the treatment. But with the help of generous friends and family, along with children’s charity Kids N Cancer, more than £100,000 were raised to send the two-year-old to Oklahoma. And after 33 general anaesthetics and dozens of very early starts Freya has now completed her course of treatment. “We have finished treatment full stop. There is no more we can do now except pray and pray and pray that the evil beast that’s left in her head is dead,” her mom said. The family will have to wait at least two years before Freya can be given the all-clear by doctors.


Source : http://www.walesonline.co.uk/news/health/all-can-pray-evil-beast-9083390



A schoolgirl’s fight against cancer

Five-year-old Charlotte Watson has courageously faced her disease since she was diagnosed with a tumor in her eye last summer. Her battle has inspired her friends and family to raise more than £10,000 to help her fight the disease.

As part of her battle, Charlotte, along with both her parents, spent eight weeks in the USA last summer undergoing intensive proton therapy. She was awarded a Cancer Research Little Star for her bravery throughout her 25 sessions of proton therapy and 10 chemotherapy sessions. She underwent her final dose of chemotherapy on December 3 and on Monday will have another scan to monitor her progress. “She’s back fulltime at school and her next scan is on Monday – that’s a big one, to see if there’s news. When we last spoke to the consultant they said her eye is not as swollen,” her dad said. The five-year-old has been described by her proud parents as ‘an inspiration’ but the whole family has not escaped praise. This month a team of walkers, including Charlotte’s uncle and grandad, led by her dad completed the 140-mile Coast to Coast route in aid of Clic Sargent, the children’s cancer charity. So far more than £9,000 of the £10,000 target has been collected, with more money yet to come. To make a donation, visit www.justgiving.com/Jonny-McKenzie2/


Source : http://www.chroniclelive.co.uk/news/north-east-news/stanley-schoolgirls-cancer-fight-inspires-9090975



12-year-old thriving after PT cancer treatment

Today’s tweens face a number of challenges in life, but for 12-year-old Madison, the obstacles have been a bit more difficult, as she was diagnosed with a brain tumor just before she turned 2. 

At just 17 months old, Madison’s family knew something was wrong. “Her neck was stiff, so we took her to our local hospital.”, Madison’s grandmother said. At first doctors thought she had meningitis, but she was ultimately diagnosed with an inoperable brain tumor. “We asked that they send her records to St. Jude because we knew they were the best,” her grandmother said. Madison went through 5 years and a half of chemo off and on, with setbacks along the way. When Madison was 7-years-old, she found out the tumor was growing again. This time, she was sent to Florida to undergo specialized proton therapy. Madison has been a St. Jude patient most of her life and her family has never had to worry about a bill thanks to fundraisers like the St. Jude Dream Home. “That $100 may seem small to me, that’s what keeps these children alive, what makes them thrive.”, says Susan. “I doubt I would be sitting here today if it weren’t for them. I am really thankful I had them in my life and they helped me and my family”, explains Madison.


Source : http://www.wrcbtv.com/story/28860057/mcminn-county-tween-thriving-because-of-st-jude




Weekly Web Review – Week 16

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is saving teens from their illness and is helping reunite families from all over the world.


What changed after cancer treatment


Sabrina Dominguez is a Senior at Silva Health Magnet High School in El Paso, Texas, USA. In the fall of 2013, she was diagnosed with a type of brain tumor called medulloblastoma, and underwent treatment at MD Anderson Proton Therapy Center.

Sabrina is now back to high school and tells us what changed after cancer treatment. She is a prolific writer and publishes many of her poems and short stories on her Facebook page, “Sabrina’s Journey.” « Something changed in me when I went back to school after cancer treatment last year. I learned that high school is a tough place, especially after a year away; that it’s not easy to be different from your peers; and that illness can change friendships. When you leave high school, whether at graduation or because of an illness, you might lose touch; you might begin to think that people were only your friends because they saw you five days a week. I’ve learned so much in this past year as a high school senior that most people do not have to worry about. I had to learn to be comfortable with my body while roaming the halls of my high school where girls weren’t bald, they weren’t slower than the rest and their balance, appetite and body shape weren’t compromised. I’ve learned that it’s okay to be different. It’s okay to not blend in. I don’t care what people think anymore, because I’m beginning to love myself. »


Source : http://www.huffingtonpost.com/sabrina-dominguez/what-changed-when-i-returned-to-high-school-after-cancer-treatment_b_7025818.html?ir=Healthy+Living&utm_hp_ref=healthy-living





Matt Rackley back walking

A year since Matt’s Fund began, cancer-battling dad Matt Rackley celebrated his 25th birthday over Easter and is on the up, six months after starting proton therapy in Oklahoma. He is now back on his feet and on a lower dose of medication.

In May last year, The Matt’s Fund campaign was launched to raise £175,000 to send the self-employed electrician to America for state-of-the-art treatment to treat his brain tumor. The money was found and Matt returned from America just before Christmas. Matt is now due for another scan at the end of this month : “That will be the one that tells us whether or not it’s got any bigger, smaller or stopped in its tracks,” he said. Matt turned 25 last week and his son Freddie celebrated his second birthday two days later. Matt and his girlfriend, Hollie, 23, marked the joint birthdays with a small party at their home. This time last year Matt was unable to walk, and he says he has ‘almost had to start from scratch’ with writing and walking. Doctors have dropped Matt’s dosage for the medication used to control the tumor’s swelling. This is good news for his rehabilitation, as the medication weakened his legs and restricted his mobility. “I feel better now from taking less,” added Matt.


Source : http://www.maidenhead-advertiser.co.uk/News/Areas/Maidenhead/Doctors-lower-Matt-Rackleys-medication-and-he-is-back-walking-a-year-since-Matts-Fund-began-15042015.htm


Young athlete wrestling against cancer

Dylan Shumaker is a multi-sport senior athlete at Bremen High School in Marshall County in northern Indiana. His favorite sport is wrestling. Dylan’s toughest match began with sore hamstrings at a wrestling camp in June 2012.

The pain kept getting worse. Doctors eventually discovered three cancerous tumors on his spinal cord. Surgery at Riley Hospital for Children in Indianapolis removed most of the largest tumor. Then Dylan underwent daily proton therapy treatments for more than a month. Toughness learned on the mat helped him wrestle with cancer. “Mentally, you have to be on your game,” said Dylan after recent follow up testing. “With treatment, there were bad days. But it’s just a thing you have to go through.” Dylan could only watch his football and wrestling teammates his sophomore season. But a clean MRI scan gave him medical clearance to return to the mat as a junior. He finished his wrestling career with a 29-and-9 senior season, advancing to the regional. Dylan still comes to Indianapolis for follow up scans every six months. This fall he comes to the University of Indianapolis for college. His experience has pointed him toward a career in the medical field.


Source : http://www.wthr.com/story/28814522/cancer-no-match-against-northern-indiana-wrestler





Kids were huge motivator for teacher, young mother during cancer treatments

Julia Rosenberger has always been a teacher of some sort or another. As a swim teacher, a gymnastics coach and even as a teenage babysitter, she worked with young kids and had a passion for helping them learn.Inspired by her father, a career teacher and administrator, and by the excellent teachers she had in elementary school and high school, the 34-year-old resident of Holland, Pennsylvania, now teaches second grade.“Being in a classroom and seeing kids make those gains and learn something new — it’s awesome to be part of that,” she says. “Especially in the younger grades. They love being in school, they love their teacher, they learn so much. To be able to give them that gift is really cool.

When Julia was diagnosed with stage 2 breast cancer last year, she found that getting back to her classroom was “a huge motivator” for her as she went through treatment.

“It’s so hard for teachers to leave their kids — I call them my kids, even though, of course, they’re not — in the hands of someone else,” she says. The kids wrote Julia notes while she was gone, telling her what they were learning and that they hoped her family was taking care of her.








She returned to the classroom after six weeks of recovery from surgery and continued to teach, with short breaks, while undergoing chemotherapy and then proton therapy at ProCure Proton Therapy Center in Somerset, New Jersey.

“I came back and I had a wig, and they didn’t notice, or if they did, they didn’t say anything,” Julia says. “Kids are very adaptive and very kind when they need to be. I loved my class last year and I will miss them forever for that, for how good they were to me. I was tired and they intuitively knew and responded to that.”

Julia had two other little motivators at home: twin girls who were infants when she received her diagnosis and are now 3 years old. She told her doctor, at every appointment, “It doesn’t matter what I look like or what I have to do. As long as I’m here for my daughters, I don’t care.”

Since her diagnosis and treatment, Rosenberger says her attitude has changed. “I try to take advantage of even the smallest things — like putting my girls to bed,” she says. “My family does a lot more things that we know will be important in the long run. We fill our weekends with things we’re going to remember. We take a lot of pictures.”



Julia also reaches out to newly diagnosed breast cancer patients. “I never would have done that before,” she says. “I was very shy in that way. But now I don’t have time for [being shy].”“It’s hard when you’re young [and get a cancer diagnosis],” Julia says. “It’s scary and there’s not a lot of resources. But other women with breast cancer, especially younger women, have to understand that proton therapy is an option, that it might be beneficial for their health and longevity.”Once a teacher, always a teacher.

Weekly Web Review – Week 15

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is helping children fight their disease and is becoming more and more available through the building of new centers each year.


Brave boy crossing the ocean for PT in the US

Guy Ryan, a brave 6-year-old boy from the UK, will head across the ocean this summer for experimental proton beam therapy on his large brain tumor.

Guy was diagnosed with pilocytic astrocytoma shortly after his first birthday. His mom said: “A few weeks before he turned one he was taken ill and would have a seizure or just lie on the floor and become unresponsive. His face also started turning blue. We were told he was having epileptic seizures and the diagnosis of the tumor came the following day.” Since then, the six-year-old boy has already had more than 20 operations and marathon bouts of chemotherapy. He is now preparing for a nine-week stay in the US to have proton beam therapy this summer but is dependent on the outcome of further surgery to try to remove some of the tumor at the Royal Manchester Children’s Hospital in May. The operation could be limited as the tumor is growing close to the brain stem and has several blood vessels running through it.  Guy’s parents are now desperately fund-raising to cover the cost of Guy, his mom and grandma living in either Oklahoma or Jacksonville for almost two and a half months. His mom says Guy has remained cheerful despite his lengthy medical ordeal and spoke of her pride in how he has handled the difficult situation. To find out more or donate, visit www.gofundme.com/qpart3

Source: http://www.wigantoday.net/news/local/a-very-brave-little-guy-1-7200984

UK to receive first 3 PT centers

The United Kingdom is to get its first three proton beam therapy centers, marking a significant breakthrough in the provision of cancer treatment. The centers will be available for National Health Service (NHS) patients from England, Scotland and Wales, medically-insured private patients and self-paying patients.

Cardiff-based Proton Partners International Ltd is to open the treatment centers in Cardiff, London and Northumberland by 2017.  The first center – Cardiff – will be operational next year. Senior consultant at the European Institute of Oncology said : “This is an exciting and important development of the provision of cancer treatment in the U.K. As things stand, patients who can benefit from this treatment have to go abroad for treatment, often at great expense to the NHS. The creation of these centers will go a long way to ensuring the very best of treatment is available in the U.K.” In addition to state-of-the-art Proton Partners’ treatment services, the Cardiff center will provide conventional radiotherapy, chemotherapy and supportive care. This could then be offered through other centers. In the future, Proton Partners International intends to develop further proton therapy centers in Asia, the Middle East and Africa. The government has announced that it will create two NHS proton beam therapy units, which will open in 2018. For more information: www.nhs.uk

Source : http://www.itnonline.com/article/united-kingdom-receive-first-three-proton-beam-therapy-centers

Childhood Cancer and Proton Therapy

Children with tumors in the brain, head, neck, spinal cord, heart, lungs and other areas that are sensitive to radiation can benefit from treatment with proton therapy because oncologists can, with protons, focus the treatment directly to the tumor area.

Proton therapy is the safest, gentlest and most modern cancer treatment for childhood cancer.  Treatment schedules vary in each case, but the majority of children are treated daily, Monday to Friday for five to six weeks. Each day of treatment can take anywhere from 30 minutes to 1.5 hours, depending on whether sedation/anaesthesia is required (as can be the case, especially for young patients that may otherwise move about during proton beam treatment). Compared with conventional radiotherapy, proton therapy can reduce the risk of IQ impairment, the risk of lung damage, and preserve fitness levels. The advantages of proton therapy for children are a higher chance of complete recovery and healthy development for children, a lower risk of tumor recurrence and a potentially lowered risk of secondary cancers later in life.

Source : http://ukprotontherapy.co.uk/what-is-proton-therapy/childhood-cancer/

Weekly Web Review – Week 14

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is helping kids from all over the world making plans for the future.


Grad student with cancer takes problem-solving approach

Graduate student Steven Keating has taken a problem-solving approach to his astrocytoma brain tumor. In the picture, he is holding a printed-3D copy of his tumor, which he printed with data from Brigham and Women’s Hospital.

In 2007, Steven had his brain scanned out of sheer curiosity. He had joined a research study that included an MRI scan, which revealed a slight abnormality near his brain’s smell center. A second scan in 2010 led to the detection of a baseball-sized tumor that was removed this past August during a 10-hour surgery. Now a graduate student in the Department of Mechanical Engineering and based at the Massachusetts Institute of Technology (MIT) Media Lab, Steven says that his curiosity saved his life. Since the surgery, it has only become more acute. “I asked for the surgery to videotaped, for my genome to be sequenced, and for the raw data from scans,” he said. He was able to apply his own research interests to develop an intimate understanding of his brain and his tumor and created a 3D-printed version of it. Having completed proton therapy at Massachusetts General Hospital, Steven is now undergoing chemotherapy. He describes life as a “wild ride.” However, as wild as it can be, he says that being an MIT student armed with data and a sense of curiosity can make all the difference. “It’s a scary ride unless you have information to make it a curious problem,” he says. “And if it’s a curious problem, it becomes an exciting ride.”


Source : http://www.healthcanal.com/brain-nerves/61919-cerebral-curiosity.html


Proton therapy for kids

More than 13.000 children are diagnosed with cancer in the U.S. each year. Many of them will need radiation to destroy their tumors, but there are side effects. Now, a more precise form of the treatment that’s been used in adults is also helping kids.

Four-year-old James Contes has big plans for the future : “I want to go to outer space,” he said. But his first mission on earth is to get better, as he was diagnosed with a brain tumor when he was three. Her mom said : “The way that we understand it is the tumor was spreading around the optic nerves”. James had two craniotomies to remove the tumor, but he still needed radiation. As traditional therapy could cause harsh side-effects such as loss of memory or vision, doctors offered James proton radiation, which uses a beam of protons rather than x-rays to kill cancer. Doctors mapped out James’ tumor and made 3D models. Then, they used the proton radiation to precisely target the tumor without affecting surrounding healthy tissue. After seven weeks of radiation, James gets to ring a bell to celebrate his last treatment. “I’m feeling very hopeful,” his mom said. His doctor said there’s greater than a 90% chance that James’ tumor will not come back. Patients typically undergo the proton radiation five days a week for six to seven weeks at a time. With young patients, doctors use anesthesia to keep them calm and still during treatment.


Source : http://www.wfmz.com/lifestyle/Health-Beat/Health-Beat-Proton-therapy-for-kids/32086726


Running London Marathon for his daughter

Ashley Grote, Norwich Cathedral’s master of music, will run the London Marathon for Emily, his 4-year-old daughter, who was diagnosed with a rare brain tumor in 2014. She already underwent three major operations and two months of proton therapy.

March 28th - Ashley is preparing to lead the Norwich Cathedral Choir and Norwich Baroque in a performance of Bach’s St John Passion tonight as well as attempt the London Marathon on Sunday April 26 for his daughter Emily and in aid of Great Ormond Street Children’s Hospital. Mr Grote said: “Thanks to the wonderful care of all the medical team and staff at Great Ormond Street Hospital, we are delighted to report that Emily is well on the road to recovery and a very happy little girl once again. “Throughout my preparations to date I have been buoyed by an amazing level of support, which has already seen me raise just under £9,000.” The performance of St John Passion will take place at the city cathedral. Soloists include William Blake (Evangelist) and James Oldfield (Christus).


Source : http://www.eveningnews24.co.uk/news/norwich_cathedral_s_master_of_music_to_run_london_marathon_for_his_daughter_and_great_ormond_street_children_s_hospital_1_4013559