WEEKLY WEB REVIEW – WEEK 49

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is offering sick children and teenagers from all around the world a second chance at life.

6 YEARS WITH A 15CM BRAIN TUMOR 

Allana Prosser, a brave 17-year-old teenager from the UK who has lived for 6 years without knowing she had a 15 cm tumor in her brain, is now set to travel to America for proton therapy.

Allana was just 11 years old when she first started having daily headaches in 2009, but it wasn’t until May this year that she finally discovered she had a brain tumor called craniopharyngioma that was pushing on her optic nerves, leaving her unable to open her right eye. She was urged to surgery the day after she was diagnosed to release the fluid on her brain and remove as much tumoral tissue as possible. Now, she’s set to travel to the States in the new year to continue her treatment with proton therapy to stabilize the tumor and live a normal life. The NHS will cover the costs of sending Allana and her mother Katrina to America for 3 months, but the family will have to fund themselves if any other relatives, including Allana’s 21-month-old sister, are to visit them, as well as covering daily living costs during the three months and any upfront payments needed. That’s why Allana has set up a GoFundMe page to raise as much money as possible before travelling across the Atlantic in January. On the page, she described how after 6 years of constant trips to her GP and being given numerous potential diagnoses and varying drugs, the extent of her problem was finally revealed this year. “On May 21 2015 my opticians finally and luckily transferred me to the emergency hospital eye clinic which saved my life.” After her surgery, Allana was told her eye would never open again, but she simply saw this as a challenge. “With some determination I used masking tape daily to tape the eyelid and try to get my muscle working again… it worked!” She added: “The last six months have been the hardest for my family and friends and most of all, me. I have been truly blessed with love and support and would have never been able to do this without any of you.”

Source: http://www.coventrytelegraph.net/news/health/teenage-girl-lived-six-years-10532787

 

ESTHER’S STORY

Discover how 16-year-old Esther and her mom Catherine talk to us about their experience of Ewing’s sarcoma.

“When Esther was 2,5 years old, we noticed she had a little lump on the base of her spine. She couldn’t really walk and was limping badly. It was then that we were told she actually had a tumor. Everything moved very quickly from that moment of diagnosis. She started chemotherapy and had surgery to take the tumor out, and couldn’t walk for 6 months. Then she had 6 weeks of radiotherapy. Her 4th birthday was a double celebration because she was given the all clear. She was able to start school and her hair grew back. She was a happy, normal little girl again. She was still having regular MRIs though, to make sure everything was ok. Then I had to call the hospital to find out that there was a recurrence in her left buttock. Esther had more chemo, more surgery to remove it, followed by high dose chemo and a stem cell transplant. That was another month in hospital and she couldn’t leave because she was in isolation. Again, we got the all clear.

10 years later, Esther says: “I was nearly 16 for the third diagnosis. I had surgery to remove it: it was a pretty massive operation and took me a while to recover. I then went to Florida for 10 weeks to have proton therapy. Now, I’ve finished treatment but still have regular check-ups and MRI scans. I don’t feel worried about it coming back because I didn’t worry before and it’s been ok. I’ve learnt there’s not much point worrying about the future. The past 14 years have shown us just how much we need medical research. Whilst the diagnostic techniques and the understanding of Ewing’s Sarcoma has moved on since my original diagnosis in 2002, and proton therapy has been developed, the drugs protocol for this cancer hasn’t changed in 16 years. There are no new drugs at all and chemotherapy is toxic so it can only be used a number of times which is why it wasn’t an option again. Having the treatment 10 years on has really brought this home to me. I’m so grateful people do fund research so that this can change.”

Source: https://www.sparks.org.uk/esthers-story-ewings-sarcoma/

 

TODDLER BATTLING STAGE 3 CANCER 

Kellen Bray Findley, a 3-year-old battling embryonal rhadomyosarcoma, was named the fourth Cancer Freeze recipient for the 2016 fundraiser.

Kellen was born along with his twin brother Kaylor on Jan. 3, 2013. Last September, Kellen began complaining with abdominal pain on his right side. His parents took him to the emergency room, where numerous tests were performed and a mass was discovered on his right lung. “We were told that there was a large tumor behind the right lung and Kellen would require a biopsy to determine if the tumor was malignant,” his mom Sabrina said. “We were devastated and completely blindsided. After the biopsy and several days of waiting, he was diagnosed with stage 3 embryonal rhabomyoscarcoma. He has been through multiple weeks of chemotherapy and will undergo proton therapy radiation at MD Anderson in mid-January 2016. We feel very blessed to have Kellen chosen as a recipient of the Cancer Freeze organization.” Cancer Freeze is a non-profit, completely volunteer organization that fundraises throughout the year to help local chosen recipients who are battling cancer. In 2016, the group will celebrate 10 years of “Freezin’ For A Reason”, its annual February fundraiser.

Source: http://www.andalusiastarnews.com/2015/11/28/local-toddler-battling-stage-3-cancer-to-benefit-from-2016-cancer-freeze-recipient/