WEEKLY WEB REVIEW – WEEK 47

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.

29-YEAR-OLD BATTLES BRAIN TUMOR TO SING AGAIN

Zachary Zortman, a 29-year-old man from York, loves to sing, from tunes created with his former bandmates to the best of Billy Joel. But a drastic life change took away his ability to form full sentences, let alone sing.

It started with a headache. “The first one I took as a brain freeze,” Zachary said. “The second one I reported to my parents and girlfriend. We said if it happened again we’d go to the hospital.” And then it did: while driving home one day, he had a seizure, blacking out behind the wheel for a few seconds. He went to the emergency room where a CT scan revealed a brain tumor, and he was immediately rushed to Penn Medicine. A week later, he was diagnosed with a tumor in the part of the brain that controls language, comprehension and expressive speech and was told he would need surgery. Neurosurgeons performed an awake craniotomy to remove 99% of the tumor. The surgery required him to stay awake while surgeons cut a flap into his skull in an attempt to remove the tumor while testing his speech and motor functions throughout the 6-hour procedure. The surgeon’s choice for testing those functions? They had him sing. Zachary spent the rest of October in speech therapy and prepared to have the other 1% taken care of in the future. This month, he’ll start proton therapy to prevent the tumor from growing again. “When he came out of surgery he couldn’t speak in full sentences,” his brother said. “Now he’s singing again, but it’s just not what we expected from someone with such a musical career. It seems bad things happen to good people.” Zack replied: “I don’t get that negativity at all. I know I have a battle on my hands but I believe I can beat it.”

Source: http://www.yorkdispatch.com/story/news/health/2016/11/22/94239566/

 

5-YEAR-OLD SMILING AFTER MONTHS OF TREATMENT

Little Riley Johnson is a 5-year-old boy from Oklahoma, USA who manages to keep smiling even after months of treatment for his brain cancer.

Doctors have a saying: “when you hear hoof beats, you should look for horses and not zebras.” So when a little boy appears to have a stubborn ear infection, most paediatricians never assume it’s cancer. Thankfully, Riley’s doctor decided to look beyond his apparent stubborn ear infection and noticed he had a slight head tilt. He sent him to the hospital for tests. That’s when Riley’s parents heard the news: “doctors said he had a mass, and we asked ‘What does that mean?’ They said ‘Well, he has cancer.’ Our family immediately just fell to the floor,” Riley’s mom said. “It’s stage 2 embryonal rhabdomyosarcoma, which is a soft tissue cancer. It literally took me a week or two to say it, let alone spell it,” she added. As the mass was located in his brain, and surgery to remove it was not possible, Riley was taken to the hospital where his team of doctors developed a treatment that involved both chemotherapy and proton therapy. Riley is now receiving his last chemotherapy infusions, which he has been doing for 42 long weeks. So if he is a superman to his family, it has nothing to do with his physical strength, but with the fact that he’s still smiling after so many months of intense treatment. Riley has permanently lost hearing in one ear and partial movement in his face, but the tumor is gone. The 5-year-old will have some permanent physical challenges ahead, but his future is bright and sparkling with possibility.

Source: http://kfor.com/2016/11/08/you-live-every-moment-to-the-fullest-5-year-old-oklahoma-boy-still-smiling-after-months-of-chemo/

 

KENDRA’S BATTLE WITH RARE TUMOR

In late Spring 2015, as Kendra completed her last semester of her nurse practitioner program, she began experiencing continuous pulsating ringing and hearing loss in her right ear and scheduled an appointment with her ENT doctor to share her concerns.

The ENT initially thought she was suffering from otitis media, however, he recommended a CT scan because he noticed that her right tonsil was enlarged. When she came back for her results, he told her that she had a rare tumor, a glomus jugulare tumor on the base of her skull, through the middle ear and extending into the intracranial cavity. Doctors decided that it would be best to monitor the tumor for a year to determine the presence of growth, so from July 2015 to July 2016, Kendra continued to live life as normal while continuing to experience hearing loss and incessant pulsating ringing in her ear. In July 2016, scans revealed that the tumor was continuing to grow causing her brainstem to deviate. It was immediately decided that she would need treatment due to the tumor’s size, growth, and location, and it was determined that radiation would be the best treatment option. Kendra was referred to a doctor at MD Anderson in Houston, Texas, who specializes in proton therapy for head and neck tumors. During her first appointment on October 26, 2016, it was determined that she would be a good candidate for proton therapy. Her treatment plan requires 35 sessions, and she will have to relocate to Houston for the 8 weeks of treatment beginning on November 14. Showing your support now, will definitely help with decreasing some of the stress of this entire process, as she needs help for relocation cost and living expenses while in Houston.

Source: https://www.gofundme.com/kendraFJourney

 

WEEKLY WEB REVIEW – WEEK 46

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping patients of all ages with different types of cancer go through treatment with hope for the future. 

FOOTBALLER’S AUCTION TO HELP GIRL FIGHT CANCER

A former football player from Watford FC, UK has auctioned off a prized football shirt to help 8-year-old Amy Barrett travel to America for cutting-edge cancer treatment.

Amy was diagnosed with Ewing’s sarcoma last June. Due to the location of the tumor at the base of her spine, surgery was not an option, and she was told she had go to America for proton therapy. Ex-Watford FC Nigel Callaghan heard about Amy’s battle when a friend asked him to play in a charity football match to help fund her treatment. A cancer survivor himself, Nigel jumped at the chance to help: “I was fortunate to come out the other side after two operations for bowel and liver cancer. I know how bad it is,” he said. “She is only eight, no kid should have to go through chemo treatments at such a young age.” The match raised £2,500 but Nigel was not content with that, putting his number 7 shirt from his Watford days under the hammer to raise a further £550. “It means a lot to me to be able to help. I’m not a millionaire like most footballers now are, but I am always willing to help anyone if I can,” he said. Speaking to Amy in America via video link at the weekend, Nigel said the young girl was able to raise a smile and thank him for raising the money, despite having just undergone her first week of proton therapy. Amy’s father added: “Not only did he donate time and a gift, he gave us a word of hope and encouragement to fight and continue to fight with the help of those around us. We want to thank him for all he has done, and hope to personally meet him on our return with Amy so he can meet the little 8-year-old girl he has helped.”

Source: http://www.watfordobserver.co.uk/news/14909059.Former_Watford_footballer_auctions_prized_shirt_to_help_in_little_girl_s_cancer_battle/

 

4-YEAR-OLD CELEBRATES END OF RADIATION

Ella Phillips-Shimovetz, a 4-year-old girl from Beavercreek, Colorado who is fighting cancer, received a magical surprise to celebrate her last day of radiation, as she was taken to her final treatment at the hospital by a horse drawn carriage fit for a princess. 

In May, doctors found a tumor in Ella’s bile duct and diagnosed her with a rhabdomyosarcoma of the biliary tract. She immediately started a 43-week treatment and has responded well to chemotherapy so far. She is also one of the first pediatric patients to complete treatment at the Cincinnati Children’s/UC Health Proton Therapy Center, which opened last August. “A lot of people wait a long time to meet their hero. Ella is our hero,” her mother said. As Ella likes horses and dressing up like a princess, her family and friends decided that a carriage ride to her 28th and final radiation treatment would be an appropriate way to combine those two loves and surprise her. “She’s just a good kid and she smiles all the time for us,” her grandmother, said. Ella will continue chemotherapy treatment through the spring to ensure the cancer stays away.

Source: http://www.daytondailynews.com/news/local/cancer-patient-gets-carriage-ride-cincinnati-children/4v5OAygLWjFBKN1hogEpyI/

 

FOUR YEARS CANCER-FREE FROM PROTON THERAPY

4 years ago, Matt Iacobazzo was a pioneer after he completed proton therapy treatment for his prostate cancer. Today cancer-free, he remains convinced of his choice and grateful to the ProCure PT Center where he was treated. 

Back in 2012, Matt spoke out about his decision to chose proton therapy to treat his cancer over traditional radiation treatment. His goal was to encourage other men to consider this newer form of treatment, as prostate cancer is the second most common cancer among men in the US. ProCure Proton Therapy Center opened in 2012, where Matt and 2 other men became the first group of patients and formed a group known as the Brotherhood of the Blue Bottle or BBB, named after the blue bottle of water that they had to drink before each proton therapy session to stabilize the prostate. Matt reflected positively about his experience : “Men can be a bit more closed off when it comes to talking about our medical issues. It’s important for us to create a space where we can speak openly about things like prostate health, so that we can get the help we need. This philosophy was integral to the BBB : we were a group that was talking about everything when it came to prostate cancer – fears about side effects, experiences with urologists, the impact of cancer on our family lives and careers,” Matt said. “When I met with the ProCure team, what they were talking about just made sense. It was the best technology, and the procedure was noninvasive,” he said. “I had a holistic experience there – they treat your mind, body and soul.”

Source: http://www.spartaindependent.com/apps/pbcs.dll/article?AID=/20161116/NEWS01/161119954/Four-years-cancer-free-from-proton-therapy

WEEKLY WEB REVIEW – WEEK 45

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

CANCER TREATMENT CROWD-FUNDING FOR 9-YEAR-OLD

Alex Goodwin, a 9-year-old cancer sufferer from the UK, has launched a bid to crowd-fund more than £120,000 for vital proton therapy treatment in the US.

Alex was diagnosed with Ewing sarcoma in his right thigh, a rare bone cancer that only affects children. His family is now hoping to raise money to pay for proton therapy, as the NHS may not fund his treatment. Alex’s cancer spread after his first round of chemotherapy, which his family said leaves him with limited options. He has been sharing his progress with his thousands of followers on Twitter and on his blog. His family say he has faced months of “constant pain and discomfort” and now relies on a wheelchair to get around. Alex took to social media to speak to others suffering with cancer and said his experience has been overwhelmingly positive. “I just love people so much and its great to see everyone helping me out,” he said. His father Jeff, a police officer, and his friends also plan to record a charity single to help raise the money. According to the Department of Health, proton beam treatment will be offered from April 2018 to up to 1,500 cancer patients at hospitals in London and Manchester, following investment worth £250m.

Source: http://www.bbc.co.uk/news/uk-england-37847281

 

A PROSTATE CANCER SURVIVOR’S TESTIMONY

A 61-year-old blogger tells his story 6 months after he finished treatment for prostate cancer, as an advocate for state-of-the-art proton therapy.

“I went through Proton Therapy for my prostate cancer six months ago. It started for me in November 2015, I just turned 60. I went to see a urologist for the first time, who told me I had a slightly enlarged prostate and then drew some blood. A week later, I was informed that my PSA was 5.28 (instead of 2-4), and that I had to have a prostate biopsy. 4 of the 13 pops came back positive with microscopic cancer T2. My urologist recommended me to have robotic surgery to remove the prostate, but I wanted to get consultations on all the options available. After reviewing brachytherapy, photon radiation and VMAT treatment, I spoke with someone who had gone through proton therapy treatments at UF Health Proton Institute for prostate cancer. In the end, after looking at all the possible side effects, I chose to go with the Proton therapy. I started my treatments on Thursday 3/10 at UF Health PI. My only complication was a problem with slow urination, which was due to my enlarged prostate, getting irritated and inflamed by the radiation. On April 21st, I also began to get slight sunburn the size of a softball on both hips. On May 3rd, I completed my 39th proton therapy treatment. The two most important issues were that within 3 days, my PSA was at 1.9 and my 6 month follow up PSA level is currently 0.6. Any questions on this procedure you can email me at dnalruk@aol.com.”

Source: http://www.cancerforums.net/threads/49401-My-six-month-follow-up-after-Proton-therapy-at-U-F-Health-Proton-Institute-Florida

 

TEEN RETURNS FROM CANCER TREATMENT IN THE US

Chloe Yates, a brave 13-year-old girl from the UK, was diagnosed earlier this year with a rare form of bone cancer and spent 3 months in the US receiving treatments. She has now returned home after 10 weeks of intensive proton therapy.

Chloe began to complain about a pain in her leg at the end of last year. As her symptoms worsened and she began to suffer sickness and dizziness, her parents took her to the hospital where she was given the devastating diagnosis. Chloe immediately began 6 months of chemotherapy, but her cancer was so rare that it could not be treated in the UK, and she would need to go to the USA for pioneering proton therapy. The family thus spent 3 months in Jacksonville, Florida, where Chloe received specialist treatment. “It was daunting and frightening but she handled it brilliantly,” her mom said. The family have now returned home, where they are awaiting results to discover how the treatment went. Chloe turned 13 while she was stateside, and even made it to Disney World in between her exhausting treatments. Her mom said: “I can’t thank the community, our family and our friends enough. They’ve been fantastic support. All the community rallied round and fundraised for her. Although the NHS paid for the treatment we had to fund ourselves while we were over there. Her dad and I say all the time that we cannot explain how proud we are. She’s amazing.” Chloe has been given a Braveheart Award in recognition of her courage during her illness. But she was adamant she did not deserve the award, saying “there are other kids who are more poorly than me”. The awards honor children facing illness or adversity.

Source: http://www.gazettelive.co.uk/news/teesside-news/brave-teen-returns-gruelling-cancer-12153628

WEEKLY WEB REVIEW – WEEK 44

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping save the lives of young cancer patients and arousing the empathy and solidarity of generous people from all over the world.

£20K TO HELP FUND BABY’S CANCER BATTLE

The family of Riley Dean Clary, a 9-month-old toddler from the UK who was diagnosed with a rare form of cancer, has raised almost £10,000 in 10 days to support his potentially life-saving treatment.

Last week, Riley was diagnosed with an extrarenal rhabdoid tumor, a form of highly aggressive cancer, after his parents noticed he had stopped using his left arm. “He wouldn’t grip anything. We then noticed a lump on his shoulder, so we went to the doctor, who sent us to the hospital,” said his 24-year-old mom, Naomi. An ultrasound scan and MRI followed before Riley was referred to an oncologist and started chemotherapy. “After 12 weeks he will be reviewed, if the chemotherapy has shrunk his tumor then we may be looking at surgery, which will be followed by proton therapy in America,” his mom said. The family has raised almost £10,000 in just 10 days towards a £20,000 target to help pay for transport, accommodation and childcare to look after their 3 other children. “It makes me feel very blessed to be surrounded by such amazing and generous people. I wasn’t expecting such an amazing response. We are so grateful for it,” said Naomi. Riley’s grandfather said: “If the chemotherapy shrinks the tumor, there is a chance Riley could be a candidate for proton beam therapy in America, so we will need to do more fundraising to pay for that, though there are some grants available.” Donations can be made to the fund to help Riley by going to www.gofundme.com/riley-treatment-support-2utsrhg.

Source: http://www.staffordshirenewsletter.co.uk/20k-target-to-help-fund-stone-baby-s-cancer-battle/story-29867943-detail/story.html

 

HOME AWAY FROM HOME DURING CANCER TREATMENT 

Alissa Gomez, a 6-year-old girl from Texas, USA who was diagnosed with medulloblastoma last April, has found a home away from home during her treatment in the Ronald McDonald House of Fort Worth.

Earlier this year, Alissa became clumsy, often running into different objects and walking funny.  Her grandmother, Leah, suspected an ear infection was causing Alissa’s clumsiness and imbalance, and she took her to the doctor on April 14. They were left with a medulloblastoma diagnosis, a fast developing brain tumor. “That day changed our lives forever,” Leah said. Five days later, surgeons successfully removed a majority of the tumor with no substantial side effects, but the molecular study of the tumor revealed a rare mutated cell. Instead of going a more typical route, Alissa began 2 months of proton therapy followed by a month break in July. The next step was chemotherapy. Alissa’s first round was in August and her final round will be this November. “She is doing extraordinarily well, but it is very difficult being away from home. Not just for Alissa and me, but for her brother back home. They miss her and she misses him,” Leah explains. Leah and Alissa found out about the Ronald McDonald House of Fort Worth from her caseworker at the hospital. The House was founded for families of critically ill children: it provides a home away from home for families, and allows parents and siblings to stay together while remaining close to a child receiving life-saving medical care in area hospitals. Leah and Alissa have stayed at the House off-and-on since her treatment began in April.  It quickly became a place of comfort for the Gomez family while being away from their own home.

Source: https://rmhfw.org/house-like-second-family/

 

BLOOD MARROW DRIVE FOR LOCAL BABY

22-month-old Grace Skuches’ story begins at 6-month-old, when she was diagnosed with Atypical Teratoid/Rhabdiod Tumor (ATRT), an extremely rare and very difficult to treat pediatric brain tumor.

The tumor has since then been fully resected and, at the time of diagnosis, there were no other tumors present in her brain or on her spine. Her spinal fluid was negative for cancer cells. Over the past year, Grace has endured five rounds of high dose chemotherapy, one stem cell harvest, and three stem cell rescues. In December 2015, it was determined that Grace had no evidence of disease. Unfortunately, in the first week of January 2016, Grace had facial paralysis that was ultimately determined to be caused by a new tumor: the cancer was back. She started proton therapy January 13 and completed the treatment on February 24. She is currently receiving daily maintenance chemotherapy. Grace has endured many setbacks, like a subdural hematoma, two shunt revisions, numerous infections, and a PICC reinsertion. During Grace’s multiple surgeries and chemotherapies, she has received 15 blood transfusions, and 18 platelet transfusions. Her family is very hopeful of a positive outcome, and the New Jersey Blood Services are hosting another blood and marrow drive in her honor. The first drive was on July 14, and due to the overwhelming response back then, the next one will be a 2-day event.

Source: http://www.northjersey.com/community-news/community-events-and-announcements/blood-marrow-drive-for-local-baby-is-scheduled-1.1683535