WEEKLY WEB REVIEW – WEEK 22

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.  

5-YEAR-OLD SENT TO FLORIDA BY NHS FOR PT

Skye Brierley, a 5-year-old girl from Blackpool in the UK, was sent by the NHS to Florida for 31 rounds of proton therapy to treat an inoperable fist-sized rhabdomyosarcoma, a cancer that develops in soft tissue cells. 

Skye’s only symptom of her cancer in the lead-up to her diagnosis was tiredness, but her parents assumed it was down to her school nativity. “The school was doing a nativity and there were four performances and all the dress rehearsals, so all the kids were completely worn out,” her mom remembers. She only became concerned when her daughter’s left eye had turned completely inwards, when they woke up on December 23. A doctor’s appointment four days later saw Skye referred to a hospital for a CT scan, which revealed a 6cm x 5cm x 4cm mass between her nose and the back of her skull. Further tests and a biopsy confirmed that Skye was suffering from rhabdomyosarcoma. Doctors allegedly told Skye’s parents weeks later they would be unable to operate on thier daughter without ‘mutilating’ her face. Instead of surgery, Skye has endured 9 rounds of chemotherapy, 3 rounds of radiotherapy and been sent to Florida in March for proton beam therapy. Despite her ordeal, the only thing Skye has really struggled with is losing her hair, according to her mom. “She loves Disney and the princesses and she asks me sometimes ‘will I be pretty again when my hair grows back?’”  Since her diagnosis, Skye has had the love and support of her siblings Jordan, 23, Taylor, 20, Kira, 13, and Damien, 9. As well as support from their family, family friends held fundraisers for Skye so they would have enough money for their 8-week stay in the US.

Source: http://www.dailymail.co.uk/health/article-5782609/NHS-pays-girl-5-receive-proton-beam-therapy-Florida.html

 

SCHOOL GIRL THANKFUL FOR PROTON THERAPY

Georgia Mladenovic, a 15-year-old schoolgirl from the UK who is bravely coping with a life-threatening brain tumor, has thanked all the people who helped her and her family travel for groundbreaking treatment in America.

Georgia has just returned from Jacksonville in Florida where she underwent 35 sessions of proton therapy over two months. Although the treatment, the flights and the costs of accommodation for Georgia and her mom were paid for by the NHS, the pair were desperate for the whole family to join them for moral support. In just three months the appeal raised an incredible £13,571 on a gofundme page alone, in addition to other fund-raisers. Her mom Sarah says they would never have been able to make the journey without the generous support of her school, friends and even complete strangers. She also says that Georgia managed her treatments very well with minimal side effects: “She did suffer from nausea and headaches but this was treated with medication provided through the proton center from oncologists at a nearby children’s hospital. They really looked after us at the center.” Now Georgia and her family have to wait to see how the tumor progresses and if the treatment has worked. It could even be a wait of 5 years. In the meantime, she will have MRI scans and follow up appointments to monitor the tumor.

Source: https://www.blackpoolgazette.co.uk/news/family-so-grateful-for-op-trip-help-1-9188290

 

RAISING £37,000 FOR LIFE-SAVING PT

The family of Bodie, a two-year-old who was diagnosed with a brain tumor at the age of 10 months, are trying to raise funds to send her to America for potentially life-saving proton therapy, which will not be funded by the NHS. 

Bodie was diagnosed with a brain tumor a few days after Christmas 2016, after 6 trips to the emergency room and family doctor within a 4-week period. She started with symptoms of sickness and constant tiredness which rapidly progressed into her losing the ability to crawl, sit up or even support her own head. “The 6th time we arrived at our local ER a doctor checked the reflexes in her legs and suggested we get an ultrasound of her brain. This revealed ‘an abnormality’ and we were transferred by ambulance to Royal Manchester Children’s Hospital, who then rushed her for an MRI scan and told us the heart-breaking news the next morning that she had a brain tumor big enough to occupy one fifth of her skull,” her parents recall. Bodie’s first surgery was on New Year’s Eve to relieve pressure in her skull and 4 days later she had further brain surgery to remove as much of the tumor as possible. Sadly after 9 hours the neurosurgeons could only manage to safely remove approximately half of the tumor. Two weeks after the surgery Bodie’s parents received the official diagnosis, a grade 3 anaplastic posterior fossa ependymoma. Since then, Bodie has endured 12 months of chemotherapy and had 2 further surgeries in February 2018. The small remainder of the tumor is inoperable, and her parents were hopeful she could get proton therapy on the NHS but her most recent MRI scan has shown a previously unnoticed mass within her brain stem, which means her tumor now exceeds the size requirements for NHS funding by a few millimeters. If you wish to help Bodie get the treatment that she needs, feel free to make a donation on her justgiving page.

Source: https://www.justgiving.com/crowdfunding/protonforbodie