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/