WEEKLY WEB REVIEW – WEEK 29

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.  

INSPIRATIONAL YOUNG DANCER

Lily Douglas, a 10-year-old girl who has recently returned from a 10-week trip to America where she received proton therapy to eradicate Ewing’s Sarcoma, was the guest star at a dance awards ceremony in London. 

Lily was diagnosed with an aggressive form of cancer after her mom noticed a sore lump on her shoulder and suspected a dance injury. But after being rushed through tests, Lily and her family got the devastating news the she had stage 4 Ewing’s sarcoma with just a 5% chance of survival. Since then, she has undergone over 100 intensive courses of gruelling chemotherapy as well as a major operation to remove her shoulder blade. Most of her treatment was carried out at Edinburgh Sick Children’s hospital but it has also seen her travel to the US for pioneering proton therapy. Luckily, Lily was told in April that she was cancer free and last week, she was one of 20 children and young people to be selected as special ambassadors for the awards, to celebrate their strength and courage. The youngster walked down the red carpet at the Cancer Research UK Kids and Teens Star Awards, held in partnership with TK Maxx. She took part in a fun-packed day of activities with her family, including a Hollywood-style Walk of Fame, a magician’s workshop and acrobatics skills training. The youngster, who has around 90 trophies and 200 medals from her career in ballet, street dance, modern and tap, also got the chance to show off her dance moves. “It was amazing, a really good experience,” said Lily. “When I got up to dance on stage, I was so happy. It felt like a dream come true.”

Source: https://www.eveningtelegraph.co.uk/fp/im-so-happy-it-felt-like-a-dream-brave-lily-10-stars-at-child-cancer-awards/

 

JESSICA HANDING OUT BRACELETS AND HUGS 

For the third year in a row, Jessica and her mother have made bracelets for all participants of Team Rynkeby Østjylland, including her own father, who this year is making his third trip to Paris for the benefit of children with critical illness.

Jessica was just 7 months old when she was diagnosed with an extremely rare and highly aggressive brain tumor. At that time, doctors estimated that she would not live to be more than one year old. Now she is the person in the whole world who has lived the longest with the type of tumor she has. Since her infancy, Jessica has undergone several intensive chemotherapy treatments and is currently having proton therapy, but the tumor cannot be removed. The tumor and the intensive treatment have given Jessica a brain injury, which means that she cannot be alone and requires constant support. She quickly becomes tired and can only go to her special school for three hours a week, play dates last a maximum of 45 minutes, and if her parents need to run an errand together, a childminder must be booked. At the moment, however, her condition is stable. “Jessica is stable and progressing in a positive direction. Both cognitively and physically, she is in progress. But the tumor is stable,” says her mom. Together with her mother, Lise Henneberg, the 10-year-old girl took her position in the sunshine atop Mur de Huy and waited expectantly for the yellow-clad charity cyclists from Team Rynkeby Østjylland. Jessica has become a mascot for the team – a girl who helps motivate the participants to make an extra effort for the sick children.

Source: https://www.team-rynkeby.is/frettir/kopi-af-nyhed/jessica-handed-out-bracelets-and-hugs-to-her-beloved-“rynkes”.aspx?Action=1&PID=7648

 

DAD BUILDING VIRTUAL HOSPITALS 

When Dom Raban’s daughter was diagnosed with cancer at the age of 13, the lack of clear information available left her feeling isolated and ignored. Six years on, her dad has created an app to help other young patients facing similar challenges. 

Issy was diagnosed in November 2011 with Ewing’s sarcoma, a rare form of bone cancer. She underwent 18 rounds of chemo and received proton therapy in Florida, which was funded by the NHS. Issy has now been cancer-free for six years. Looking back on the time she was treated for her cancer, two things became apparent to her dad Raban: one, the clinical care she received was excellent; two, the information she was given about her condition was seriously lacking. And when Issy went online to better understand her situation, she was overwhelmed with frightening information, including details of her survival chances, 20%. Her dad says she is still haunted by the lack of information she received at the time: “While Issy is doing really well, she has this deep mistrust of the health service.” Keen to bridge this gap, Raban has developed an app called “Patient’s Virtual Guide” to help inform young patients who are going through similar experiences. The app uses games, graphics, augmented reality, artificial intelligence and text written by medical writers to guide patients through a virtual hospital. “It’s about communicating health information in a way that makes children feel engaged with the treatment they are receiving,” says Raban. “Evidence suggests that if you put information in the hands of patients, they experience reduced stress and anxiety, which can lead to better clinical outcomes.” The app has received funding from the NHS and will be trialled in Royal Manchester Children’s Hospital this autumn.

Source: https://www.positive.news/2018/society/33607/the-dad-who-builds-virtual-hospitals-to-help-young-patients/

WEEKLY WEB REVIEW – WEEK 28

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 battle against cancer. 

SUPER SID’S MOM THANKFUL FOR SUPPORT

The mom of Sid Earley, a 7-year-old schoolboy from the UK who was diagnosed with a rare brain tumor called ependymoma, has thanked their local newspaper’s golden-hearted readers for all their support.

Sid underwent a 10-hour surgery on his brain after he was diagnosed with ependymoma, a rare, large cancerous tumor centered around his brain stem. He must now receive intensive proton therapy in Jacksonville, USA, at the rate of 30 minutes of treatment, Monday to Friday for 10 weeks. Although the NHS have agreed to fund his treatment, they will not be able to cover the living costs or the cost of flying out his identical twin brother Mac, which devastated his mom Alex and dad Simon. However, after a campaign, hundreds of people stepped up to raise cash to keep the inseparable pair of brothers together. £13,631 has been raised of the £5,000 target and Mac can now travel with the family to Jacksonville. Alex said: “We have just been totally bowled over by the support shown to our family. For us it was never an option to travel without Mac. You know the first time Sid walked after his operation was when he saw Mac, the difference it made having his brother there was unbelievable. I’m unbelievably grateful of the generosity and kindness shown to us and I just don’t know how I can thank everyone individually.” Last week Sid and Mac were awarded Primary School Pupil of the Year at the Wirral Globe School Awards.

Source: http://www.wirralglobe.co.uk/news/16332819.super-sids-mum-thanks-globes-golden-hearted-readers-for-support/

 

POLICE OFFICER BATTLING CANCER

Debbie Hall, 49, is a police constable from the UK who won’t accept her terminal cancer diagnosis. Fighting for her life with the help of friends and colleagues, she is getting closer to her £75,000 target to fund groundbreaking treatment. 

Debbie has been hurt by cancer before. In 2007 her mother Hilda died at 58 of breast cancer. Fifteen years ago Debbie was diagnosed with the same condition and underwent a mastectomy, radiotherapy and chemotherapy. In 2015 tests revealed that she had bone and liver cancer. After chemotherapy, her tumors reduced in size but by the beginning of this year they had grown again, making the search for other options more urgent. In Germany there is the possibility of proton therapy, which attacks tumors with a radiation beam, and immunotherapy, which boosts the immune system. “Christie’s hospital have informed me that there is another treatment they can consider. They’re looking at putting me on targeted therapy, which potentially could run quite well with proton therapy,” Debbie says. In March, her colleagues launched a campaign to fund groundbreaking treatment in Germany. About £54,000 of the £75,000 target has been raised. “The people that are supporting me: my friends, family, the police family, people I don’t even know. I just can’t put into words how it makes me feel. I’m so grateful to everybody.” To support the fundraising campaign for Debbie, visit www.gofundme.com/help-save-debbies-life

Source: http://www.newsandstar.co.uk/news/Fundraising-for-Carlisle-police-officer-battling-cancer-tops-50000-70a25115-ce5a-460e-ac18-3a84e709e0f5-ds

 

OSCAR’S STORY

Raising awareness of childhood cancer is often just as important as raising money for more vital research. That’s why Oscar’s mother is sharing the story of her son’s battle against cancer. 

“Oscar was born in June 2014. He was a normal healthy happy little toddler. So in June 2017, we were shocked beyond belief to receive the worst news any parent could ever be given. Oscar was diagnosed with rhabdomyosarcoma of the right temporal fossa. Our world was completely shattered. Within days of diagnosis, Oscar was admitted to hospital to receive round one of 13 sessions of chemotherapy. On 28th November, Oscar’s mass was surgically removed, but due to inadequate healthy tissue margins, he would still need proton therapy to hopefully reduce the risk of relapse. So in February 2018 we flew out to Germany to start proton therapy. We lived in Germany for 7 weeks while Oscar received 28 sessions of treatment while under general anaesthetic, 5 days each week. This was Oscar’s final course of treatment and on our return to the UK, he finally got to ring the End of Treatment bell. As a family we have been to hell and back, but Oscar in true ‘superhero style’, has shown tremendous courage throughout and has never complained. He has struggled with terrible sickness, joint pain and fatigue, but this hasn’t stopped him from always having the biggest smile on his face and filling the room with his infectious laugh. Oscar is doing really well now and life is slowly returning to some kind of normal. We know we are one of the lucky ones.”

Source: http://www.friendsofrosie.co.uk/oscars-story/

WEEKLY WEB REVIEW – WEEK 27

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

EYESIGHT RECOVERY WITH PROTON THERAPY

Brave Evie Hughes, a 6-year-old from North Wales who was told she would be permanently blind in one eye after she was diagnosed with a rare brain tumor, has stunned doctors to see again thanks to proton therapy treatment in the USA. 

Evie was diagnosed after her schoolteacher recommended that she go for an eye test, and an optician found that the youngster was blind in her left eye and sent her for tests at Alder Hey Hospital in Liverpool. After an MRI, her parents learned that Evie had craniopharyngioma, a rare type of brain tumor, and would need proton therapy in the US. They held fundraising events in their community and launched a fundraising page, and raised an impressive £2,500 through crowdfunding along with further donations and events. Now Evie has finished her treatment at UF Health Proton Therapy Institute in Jacksonville, Florida and was able to ring the bell in hospital to celebrate being signed off. Against all odds, her sight is now beginning to come back thanks to proton therapy. Evie’s mom said her returning vision is something doctors have never witnessed before. “I feel like I have won the lottery, better than that even because Evie is starting to see again. All the medical people said she would be permanently blind in that eye. But ophthalmologists in the USA confirmed her peripheral vision is returning, something they have never witnessed before and called it a miracle,” she said. “The doctors won’t be able to say for certain if the proton therapy has been successful for another six months, she’s due to visit Alder Hey next week for a check up and there will be regular visits for the next few months.”

Source: https://www.express.co.uk/life-style/health/981572/Proton-therapy-miracle-treatment-girl-blind-see-again

 

LIFE AFTER PROTON THERAPY

Steven Snyder of Roanoke Rapids in North Carolina, a former proton patient and member of the Brotherhood of the Balloon (BOB), was treated with proton therapy at MD Anderson in 2016. 

Today Steven is feeling great and cycles 150-200 miles per week. “I’m as healthy as an ox!” Steve says. “I would like to thank the BOB for guiding me to the data I needed to support my battle with Blue Cross Blue Shield for proton therapy. Also, without reading stories of denials and appeals from former patients and BOB members, I may have given up; those stories gave me hope to fight on… Thank you also for publishing your newsletter. Without it, my health would not be what is it today.” Steve just cycled from the mountains in western North Carolina to the coast, which is more than 500 miles! If you’re interested in learning more about proton therapy, visit the Brotherhood of the Balloon website. If you’ve already received proton therapy for prostate cancer, don’t hesitate to sign up to become a BOB member, it’s free!

Source: http://www.prostateblog.com/?p=691

 

MOTHER CELEBRATING END OF TREATMENT

Hauli Gray, a mother from Oklahoma who has been battling breast cancer for a year, is celebrating with her family after she was able to ring the bell at the ProCure Proton Therapy Center, signifying she beat cancer. 

Hauli has battled breast cancer for approximately a year and has already undergone multiple treatments and surgery. Ultimately, her doctors said they felt like proton therapy was the only real option for her, because her cancer was so close to her heart that they feared traditional radiation would put her other organs in danger. As Blue Cross Blue Shield Oklahoma denied her claim for proton therapy multiple times, she learned in early May that ProCure Proton Therapy Center would cover the costs of her treatment. Last Saturday, she finished her final radiation treatment and had a “ringing of the bell” ceremony, signifying she has beat cancer. “I just finished my last treatment, I had a total of 34 radiation treatments. It’s been hard. I feel overwhelmed, I feel joy right now, I’m so excited,” she said. “I know it’s not completely over, but I just feel like I’ve finished the hard part. This is the happiest I’ve been in a long time.”

Source: https://kfor.com/2018/06/30/im-so-excited-oklahoma-mother-celebrating-rings-bell-after-finishing-radiation-treatments-for-cancer/

WEEKLY WEB REVIEW – WEEK 26

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

BRAIN CANCER DIAGNOSIS AFTER FATHER’S DAY

When Katie Funtila, 9-year-old, started complaining about headaches, her dad Moises convinced her doctors something was wrong and she was diagnosed with a type of brain tumor called medulloblastoma the day after Father’s Day last year. 

Katie’s dad Moises, a former Marine and Air Force member, served in military hospitals as a medical care worker for 22 years. So when his daughter, then 8, complained of painful headaches, nausea, and vomiting, his training led him to suspect that she might have a brain tumor. But his biggest battle was convincing her doctors, who were quick to dismiss his concerns. Finally, Katie was diagnosed with medulloblastoma in June 2017. Medulloblastoma is more common in children than adults and accounts for roughly 20% of all pediatric brain tumor cases. Usually, patients undergo surgery to have the tumor removed, followed by radiation or chemotherapy. After Katie was diagnosed, Moises quit his job as a bank manager to become a stay-at-home dad to his four other children, while his wife Kimberly accompanied Katie to Memphis, TN, where she received proton radiation therapy at St. Jude Children’s Research Hospital. While Moises and his wife managed to support themselves via his compensation from the VA and help from his church, as well as donations from a GoFundMe account, about 25% of parents of kids battling cancer lose up to 40% of their income, due to taking time off work and the medical costs of caring for a sick child. “I’m really thankful for everybody that we’ve come in contact with, from Stanford to our local community to St. Jude. I’ve realized there’s this whole other world, and this experience also brought to light the goodness in people,” her dad said.

Source: https://www.menshealth.com/health/a21348530/fathers-day-dads-with-sick-children/

 

KATE’S STORY

Kate is 21-year-old young woman from Adelaide in South Australia. She was diagnosed with a brain cancer after suffering from severe headaches and hearing issues and now needs state-of-the-art proton therapy. Here is her testimony. 

“At the ages of 18 and 19, I underwent multiple surgeries for what doctors believed would fix the severe headaches and hearing issues I had been having. In July 2016 I my Ear, Nose and Throat surgeon told me they found a tumor the size of a tennis ball in my brain. In October I underwent a 13-hour brain surgery, but the tumor could not totally be removed because it was entangled in my brain’s major nerves. As a result, I have no sensation in the right side of my face, including my teeth, gums, eye, and even my ear. Ever since the surgery I have been having MRI’s to monitor the remaining tumor. Unfortunately there has been some worrying growth, which means that I need treatment before it gets large again and affects my eyesight. I have been told I need immediate proton therapy, but Australia won’t offer this type of treatment until 2022. This will be too late for me. The only solution is to travel to America or Europe. I do not qualify for the Medical Treatment Overseas Program because it is not life threatening. But the thought of going blind is a major threat to me. I have started this Fundraising Campaign to help raise whatever I can to help my family cover the cost of my treatment, flights and accommodation and to help create awareness about this Proton Therapy Beam Machine.” To donate, click on the link below.

Source: https://www.btaa.org.au/news/147/kates-journey-to-health-fundraiser-dinner

 

SPECIAL DAY FOR PROTON PRINCESS

Brixton Henfield, a 6-year-old girl who has been fighting rhabdomyosarcoma for the last year, was offered a special day at the National Aquarium in the Inner Harbor in Baltimore.

Despite her young age, Brixton knows a little about what is harmless and what is not. In May 2017, she was diagnosed with rhabdomyosarcoma, a rare malignant tumor involving muscle tissue. After the cancer metastasized she began chemotherapy treatment at the University of Maryland Children’s Hospital, as well as proton therapy at the Maryland Proton Treatment Center. Proton therapy is a method of radiation treatment that more precisely attacks a tumor while causing less damage to surrounding healthy tissue. It is particularly important in the treatment of pediatric patients, because of all the developing tissue structures and the potential reduction of long-term side effects. On the last day of her treatment, Brixton participated in the Proton Center’s “Magic Castle” program, where one of the center’s radiation therapists dresses up as a princess and grants the patient’s wish. She was to meet some of the animals she adores. “The animals are cute, and I love them so much,” she said before she began her interactive animal experience. Following her table session with terrestrial animals, she got a guided tour of the entire aquarium, starting in the buildings underwater viewing area, where she got to see her favorite fish, the blue surgeonfish, better known as the “Dory fish,” from the “Finding Nemo” franchise. “To see her smile and have so much fun with them, especially with everything that she’s been through and still going through,” her mom said. “We’ve been waiting for this day for a long time. It’s good to take your mind off of doctor visits, hospital stays, hopefully some of those are behind us.”

Source: https://www.wmar2news.com/news/health/proton-princess-gets-special-day-at-national-aquarium