WEEKLY WEB REVIEW – WEEK 16

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 in their fight against cancer and reuniting families.

TWO BROTHERS RECOVERING FROM BRAIN TUMORS

Aaron and Andrew Eunice, 2 brothers from Georgia of respectively 10 and 9 years old, are recovering from treatment after they were both diagnosed with a rare type of brain tumor called craniopharyngioma. 

The two boys were diagnosed with brain tumors less than 6 months ago. These diagnoses came within a few weeks of each other, and not only is this type of tumor rare, it’s even more unusual that it happened to two brothers. According to Dr Aldana, their neurosurgeon at Wolfson Children’s Hospital, there are a couple ways to fight this condition. In Andrew’s case, Aldana fully removed the tumor by pulling it through his nasal cavity, allowing him to avoid open brain surgery. Whereas Aaron’s tumor was partially removed through surgery, and his treatment was completed by proton therapy sessions at the UF Health Proton Therapy Institute. He got to wear a cool mask, and the electrically charged particles closely attacked the tumor, with little or no damage to healthy tissue. After completing their treatments, the two boys are feeling great. Their doctor is looking into the possibility of doing some tests to learn more about why this happened to the brothers, as he wants to determine if there is some genetic explanation. The boys will also have to have many more follow up visits in the months and years to come, but the family is hopeful this battle is behind them.

Source: http://www.news4jax.com/news/georgia-brothers-recovering-after-both-treated-for-rare-brain-tumors

BRAVE MOLLY FLIES TO THE US WITH FAMILY

Molly Fleming, a 4-year-old girl from Beech Hill in the UK who was diagnosed with aggressive brain cancer, is finally on her way to America for proton therapy treatment.

Molly is accompanied by her parents Paul Fleming and Claire Grundy and her siblings, Harley, 5, 3-year-old Thomas and 13-week-old Jacob, after the local community successfully rallied round to raise money to pay for her family to stay in the US while she is being treated. Molly will spend around 9 weeks in Florida having the state-of-the-art treatment. Shortly before their flight, her dad said: “We’re glad everything is moving along now. Molly’s doing alright and she’s as feisty as ever. It’s quite daunting for us as a family but we’re ready to go now. “We’ve had some feedback from people who’ve been to Florida and heard really good reports. “They said they really look after you over there and that has settled us a bit.” Paul revealed the family has set a target of getting Molly well for her first day at school in September. She will need a couple of weeks in Jacksonville preparing for the treatment before receiving proton beam therapy Monday to Friday for around 6 weeks.

Source: http://www.wigantoday.net/news/brave-molly-flies-to-the-us-with-family-1-8504885

FIREFIGHTER DIAGNOSED WITH BRAIN CANCER

Seamus Cullingan, a Willoughby firefighter, husband and father-of-three, was diagnosed with a brain cancer after he had been suffering from headaches for a year.

He collapsed at work one day and was transported to the hospital by the firefighters from the station, where he learned he had a 5-6 inch tumor in his head, indicative of brain cancer. One week later, surgeons removed most of the tumor, prior to him undergoing intensive proton and chemotherapy treatments. His wife Cyndie, their parents and the Willoughby firefighters would take turns taking Seamus 5 days a week for 6 weeks to his treatments. Seamus currently suffers from speech and motor deficits, but is working through physical to overcome that. “We are asking everyone to bring or send boxing gloves,” Cyndie said. The boxing gloves are a symbol to the family that they are going to fight and knock out the cancer.  Cyndie and Seamus, along with their kids, Emily, 13, Tadhg, 11, and Gavin, 8, are doing everything they can to maintain a positive attitude, but the family still has a long battle ahead of them and faces financial hardships. According to Cyndie, the cost of the proton therapy is $300,000, and a Gofundme page has been set up to help the family cover the cost of medical expenses. To help them, visit www.gofundme.com/fightforseamus.

Source: http://www.news-herald.com/general-news/20170414/willoughby-firefighter-first-diagnosed-with-brain-cancer-after-signing-of-palumbo-act

WEEKLY WEB REVIEW – WEEK 15

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.

TWO BRAIN TUMORS FOUND DURING EYE EXAM

Summer Wrigley, 8-year-old, was rushed into surgery after two brain tumors were found during a routine eye exam. She had 95% of the tumors removed, but she may need proton therapy if they start growing back.

Summer underwent surgery one day after the tumors were found, to remove one and half of the other. Her mom Amie said: “It was a grade I tumor which means that it wasn’t cancerous, but she may still need some chemotherapy to get rid of the cells left over. We have been told the chemotherapy could last around 18 months. Summer has been really brave.” Summer had to stay in hospital until February 14th. In a cruel turn of events, the half of the tumor that wasn’t removed in the first surgery started to grow faster than doctors had expected. She had to return to the children’s hospital before she had another surgery on the remaining tumor on March 31. “If the tumor starts to growing back, we may have to go to Florida for proton-beam therapy. The surgeons had to leave some cells behind in the second surgery, they thought she could have gone blind,” Amie said. “The surgeons have been really great. They weren’t messing about and were constantly checking up on her.” Summer is a keen dancer and attends lessons up to 5 times a week, ranging from ballet to modern. Her friends took part in a silly hat day on Friday March 31 to raise money and awareness for brain tumor research. “They did it for Summer. She is so happy that her friends did the fundraising and is sad that she couldn’t be there herself. Summer’s been going to dancing for six years so they’re like a second family to her. They’ve grown up together.” The dance center raised a total of £219 for Brain Tumour Research UK during the event.

Source: http://www.mirror.co.uk/news/uk-news/brave-little-girl-rushed-surgery-10169000

 

PLEA FOR HELP FOR TERMINALLY ILL FATHER

Rafal Tabor, a 40-year-old father-of-two from Jersey who has been diagnosed with a terminal brain tumor, has been offered a glimmer of hope that could save his life.

Rafal, a builder, was healthy and active until four weeks ago. He visited his GP after a sudden bout of numbness in his right hand and leg. The GP signed him off work but days later his condition deteriorated and doctors at the hospital diagnosed him with an aggressive glioma. He was referred to experts in Southampton who said they could operate but warned that if they did he would be unlikely to walk or talk again. However, Rafal has an appointment at a clinic in Germany that offers pioneering proton therapy, but the treatment will cost up to £20,000 and could take two months. His wife Monika, and several of their closest friends, are now asking Islanders to donate money for a treatment which could help save his life. To donate visit justgiving.com/crowdfunding/ewa-modzelewski.

Source: http://jerseyeveningpost.com/news/2017/04/01/family-plea-for-help-for-terminally-ill-fathers-treatment/

 

GIRL GEARING UP FOR FIGHT OF HER LIFE

Kira Short, a young girl from Maple Ridge in Canada, is facing the fight of her life since she’s been diagnosed with a malignant tumor between her C1 and C2 vertebrae called epithelioid sarcoma.

Kira has been undergoing intense chemotherapy and radiation sessions since 2015. Last June, her oncologist had some great news: the cancer had not spread, and her tumor was shrinking. She seemed well on her way to recovery after another round of chemotherapy and a 3-month stay in Boston for a highly-specialized proton therapy on the horizon. That was also a success, and everything seemed like it was going back to normal, but the shooting neck pain came back in early February. Her dad feared the worst as it was the same chain of events that led to the original cancer diagnosis. While it hasn’t been confirmed that her new tumors are cancerous, her oncologist said that 9 times out of 10 the spread means it’s a strong possibility. Kira has also re-started her chemotherapy protocol, but has limits on how much she can take. A lot of what happens next depends on how she reacts to the latest round of chemotherapy. She’s also taking multiple medications, including some that artificially boost her immune system until it naturally returns. Her dad says that what has been huge is the helping hand of not just Maple Ridge and Pitt Meadows residents, but the surrounding communities, as well. “It makes me feel so good knowing there are so many people in our corner as we go to battle this nightmare we call cancer,” he says.

Source: http://www.mapleridgenews.com/news/418552273.html

WEEKLY WEB REVIEW – WEEK 14

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 battle against cancer and giving hope to their families.  

LIFE-SAVING TREATMENT FOR BRAVE MOLLY 

Molly Fleming, a brave 4-year-old girl from Beech Hill in the UK who was diagnosed with a rare and aggressive form of brain cancer called ependymoma, is set to fly to the USA for proton therapy. 

Molly was diagnosed after she started suffering from severe headaches, lethargy and foggy eyesight. She was rushed to the hospital, where a scan revealed a brain tumor. A biopsy quickly revealed a cancerous tumor and the only treatment option was a flight to either Jacksonville in Florida or Oklahoma for proton beam therapy. “The rare and aggressive brain cancer is why she needs the proton beam therapy, because it’s more accurate than anything we’ve got over here,” Molly’s dad said. The little girl will need to spend about 9 weeks in the US for treatment. Her parents are now raising around £5,000 to pay the costs associated with living stateside for more than 2 months while Molly has the treatment. Her dad said: “Molly has done really well, she’s very brave. She’s been quite sick and it has affected her speech a bit but she still tells her brothers off and sends me out on errands to get McDonald’s and Pringles for her. We’re very proud of her.” The Beech Hill community has rallied round to help the Flemings reach their £5,000 total on hearing of Molly’s cancer battle. Her dad says the support from people in the local area has been incredible, with more than £3,500 donated to the campaign in less than a week. He said: “We’ve been overwhelmed. We’re really grateful for all the help and donations and we’re a bit lost for words.”

Source: http://www.wigantoday.net/news/life-saving-treatment-for-brave-molly-1-8479570

 

SURVIVING MESOTHELIOMA WITH PROTON THERAPY 

Yvette King, a 52-year-old cancer survivor from Maryland who did not take her pleural mesothelioma diagnosis sitting down, wants to use her strength and story to help others battling this aggressive cancer. 

In October 2015, Yvette began struggling with breathing and developed a painful cough. Her doctor found a mass on her lung and she was immediately admitted to the hospital, where she was diagnosed with stage III pleural mesothelioma. The next few weeks were filled with chemotherapy to shrink the golf-ball-sized tumor on her lung. Two months into her mesothelioma treatment, King learned the tumor shrunk enough for her to qualify for surgery and underwent an extrapleural pneumonectomy. In March 2016, she started 6 weeks of radiation therapy at Maryland Proton Treatment Center (MPTC). The center was nearly 40 minutes from her home, so naturally it was overwhelming to make this commute daily, but Hope Lodge made it possible for her to stay near her cancer center throughout her radiation treatments. As an avid runner, Yvette credits her survivorship to exercise, God and becoming her own advocate. After her diagnosis, she launched an online journal to share her story. Between her medical team at MPTC, the warm folks at Hope Lodge, her extraordinary nurses and other survivors she’s met along the way, it’s her desire to inspire and help others that drives her today.

Source: https://www.asbestos.com/blog/2017/04/06/pleural-mesothelioma-survivor-yvette-king/

 

ALEXIS’ NEW TUMOR SHRUNK BY HALF

15-year-old Alexis Shapiro first underwent surgery in 2011 to remove a benign brain tumor, which damaged her brain and resulted in hypothalamic obesity. So when her family found out the tumor had returned, they kept her out of the operating room. 

Alexis first underwent surgery in 2011 to remove the brain tumor, which resulted in a damaged hypothalamus, the part of the brain that controls when a person feels hungry or full. Within months she developed hypothalamic obesity, a rare condition that caused her to gain weight uncontrollably. She dealt with constant pain and fatigue and had limited mobility, and despite drastic changes to her diet and exercise routine, she could not lose the weight. Concerned for her life, the Shapiros decided to try weight-loss surgery as a last resort. Then they found out the tumor had returned. “We didn’t want her to have to go through another brain surgery,” her mom said. As an alternative, they applied to an intense, 6-week proton radiation study at St. Jude Children’s Research Hospital. Applying for proton therapy was a gamble, but her mom says she is so thankful they did. Beyond the tumor shrinking by half, there was another, unexpected benefit for Alexis: “She was surrounded by kids with her same condition and never felt like an outcast. She got to be a real teenager,” her mom said. These days, Alexis stays in touch with them through social media. And moral support is important for her, who has gained back the 60 lbs. she initially lost after the weight-loss surgeries. But her mom says overall, she is doing well. She also has a great goal up ahead: attending high school. In the fall she will return to public school after being mostly home-schooled for the past few years. “I think she is pretty nervous. She is a little more outgoing since she’s made these friends at proton therapy. It increased her confidence,” says her mom, who keeps supporters updated through a “Hope and love for Alexis” Facebook page.

Source: http://people.com/bodies/alexis-shapiro-texas-girl-who-faced-extreme-weight-gain-is-doing-well-mom-says-her-tumor-has-shrunk-by-half/

WEEKLY WEB REVIEW – WEEK 13

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.

SOLDIER WITH BRAIN TUMOR MARRYING HIS LOVE

Cai Keehan, a 32-year-old ex-soldier who was diagnosed with an inoperable brain tumor, is set to marry the love of his life a year after being told by doctors he would not survive long enough to say “I do.”

Cai was diagnosed with a brain tumor after he started dribbling down one side of his face and experiencing tingling in his face. His fiancée Pamela, a trainee dental nurse, knew something was wrong and asked him to seek medical help. Scans revealed a shadow on his brain, a grade 4 inoperable tumor which left him just one year to live. Engaged since 2013, Cai decided to marry Pamela as soon as possible. Now back home, he says he is feeling strong, and juggling wedding plans with sessions of chemotherapy. The couple, who have been together for 13 years after meeting in a bar and have a 10-year-old son, Christian, will marry on April 15 in front of around 150 guests. Christian will be involved in the ceremony as a page boy. A friend of the couple has also set up a JustGiving page on behalf of the club to raise £10,000 towards the possible £30,000 needed to fund proton therapy treatment for Cai in Prague, Czech Republic, in a last ditch attempt to prolong his life, as the chemotherapy has stopped working. “Proton therapy may only give me an extra year or so, but at least I will be married to Pamela,” Cai said. Overwhelmed by the kindness and generosity people have shown, Pamela said: “So many people are willing to help. It is amazing.” Cai added: “I am just taking it one day at a time. I have done 13 years in the army so I have been in tough situations before, but this is by far the biggest battle I have faced.”

Source: http://www.walesonline.co.uk/news/wales-news/hero-soldier-marry-year-after-12812716

 

CANCER SURVIVOR FIGHTING FOR INSURANCE COVERAGE

Alexa Gash, a 29-year-old wife and new mom, was diagnosed with cancer just before learning her insurance wouldn’t cover her treatment. Now cancer free, she is fighting to make sure all insurance providers cover proton therapy.

“I was brushing my teeth one day, I hit it and had a little bit of blood when I rinsed my mouth,” said Alexa. She got a biopsy and 3 days later got the call back from the doctor. She started researching treatment options: even after surgery to remove the tumor, she would still need radiation and chemotherapy. “I would have possibly had things to deal with such as swallowing dysfunction or loss of certain glands, such as my salivary glands,” she said. She found another option, proton therapy. With a treatment center in Knoxville, recovery seemed to be falling in place. However, her insurance won’t cover proton therapy treatment for her tumor. “You have that fear when you’re waiting for the insurance company to approve you, your cancer could be getting worse or spreading,” she said. She sent letters to her insurance company, three appeals and three denials for coverage. There was a loophole though, as the proton therapy facility has a financial assistance program that covered Alexa. Through 7 weeks of treatment, the family drove along the road to recovery every day from Chattanooga to Knoxville until good news finally came. “I was told I was in remission. Cancer-free, which is the best news ever.” The tumor was gone, but the scars from her battle for coverage are still healing. Alexa is joining other alternative cancer treatment advocates in Nashville this week, hoping to convince lawmakers to pass a bill that would include proton therapy as an approved method of treatment for insurance companies.

Source: http://www.local8now.com/content/news/Tennessee-mom-beats-cancer-fights-for-insurance-to-cover-alternative-treatments-417379903.html

 

NO SECOND TUMOR FOR LITTLE FREDDIE

Freddie Hunt, a 2-year-old toddler from Yateley in the UK who underwent surgery for a brain tumor last month in Arizona, has been given the all clear after doctor feared a second tumor.

Last month, Freddie was discharged from the hospital in Arizona two weeks after an operation to remove most of a brain tumor. However, as he was still suffering from diarrhoea and fluid retention, he was readmitted to hospital this week just days before he was due to return home to be tested for a second tumor. Before going in for the latest round of tests, his mom Abby posted an update on the Together For Freddie Facebook group after another difficult day in the US. She said he had been up all night, screaming in pain and refusing any food. Thankfully, results showed no second tumor, but Freddie is not well enough to continue his treatment. He was due to return to the UK by the end of March so he could recuperate, with the plan that he would return to America for proton therapy. However, the timeline has been thrown into doubt. The toddler is also suffering from some paralysis and has lost the sight in one eye, and it is not clear if either of these effects will be permanent. The family’s troubles therefore continue, with more money needed to complete his treatment.

Source: https://www.964eagle.co.uk/news/local-news/2252517/yateleys-freddie-hunt-tests-show-no-second-tumour/