Little girl brightens Christmas for family and schoolmates three years after proton treatments

[Editor’s Note: This is the fourth Christmas in as many years we have written about Georgia Halliwell-Paget, a 6-year-old girl now living in the U.K. She received proton beam treatments during Christmas 2012.]

 

An enormous stuffed snow leopard, a gift from Father Christmas last year, reclines nobly at the foot of Georgia Halliwell-Paget’s bed. The cuddly beast is one of many protectors of the slight 6-year-old girl with the buoyant smile, who is reveling in her cancer-free life in Britain’s Shropshire County.

This Christmas, Georgia is wishing for a stuffed giraffe she spied at the local department store. Not surprisingly, it’s as colossal as the snow leopard and, if Father Christmas is so inclined, will tower over Georgia’s tiny frame.

But Georgia finds comfort in that disparity, just as she does in hanging around with Big Jemima and other girls twice her age — and height — from her brother AJ’s sixth-year class.

“Georgia tends to gravitate to the older children,” says her dad, Nick Paget. “She is physically so small, people just want to look after her. Everywhere she goes, she gets so much attention. She just oozes cuteness.”

With her long brown hair pulled back into a ponytail and adorned with a pink hairband, Georgia is as chatty and silly and fun-loving as any 6-year-old girl.

“At her birthday last June, we had all of her classmates come over, and everyone had so much fun,” recalls Nick. “And parents would comment that they never would have guessed Georgia had ever had cancer.”

At just over a meter tall, Georgia remains the smallest child in her classroom. “She certainly doesn’t look 6 and a half,” Nick says. “She maybe looks closer to 4 or 5.”

Nick and his wife, Becca Halliwell, believe Georgia’s diminutive height is a result of two factors: genes — her Filipino birth parents were small in stature in comparison to British Caucasians — and the proton beams that had irradiated her aggressive Ewing’s sarcoma.

 

“They had no choice but to radiate [Georgia’s lower spine]” because the tumor was attached there, writes Becca. But, she maintains using protons was absolutely the right thing to do.

Georgia’s “forever parents” hope the use of targeted proton beams ensured little or no spillover radiation to her bladder, bowels, liver or uterus. Harm to those organs by conventional radiation would have dramatically impaired Georgia’s quality of life far beyond her “disorganized spine” and the asymmetrical growth of her legs that doctors from England’s National Health Service (NHS) had identified in 2014.

Georgia’s right leg is a centimeter and a half shorter than her left; her right foot is a full size smaller than her left. Special shoes newly fitted by her NHS orthopedist are helping Georgia accommodate the imbalance fairly well. Still, years without the benefit of her special shoes cause Georgia to favor her left leg, impeding proper muscle development in her right.

Nick praised the simple pragmatism of a physiotherapist they had recently consulted who requested that Nick and Becca video Georgia doing everyday things such as getting in and out of bed or walking up and down stairs. “The videos clearly showed Georgia overcompensating with her left leg,” Nick remembers. “We didn’t realize the extent to which it was happening. It’s highlighted the things Georgia needs to focus on.”

The physiotherapist has suggested 10 different exercises for Georgia to do as part of a treatment plan. Focused activities will help her regain muscle strength in her right leg and promote a more normal gait.

Georgia’s cancer treatments began in the Philippines where Becca and Nick had lived and worked. And where they had adopted AJ and Georgia. In 2012 and 2013, doctors at St. Luke’s Medical Center deployed a treatment plan involving several therapies to attack Georgia’s cancer. Injections of P-53 gene therapy were made directly into Georgia’s pelvic and spinal tumors.

The pain Georgia endured was intense. Becca and Nick were beside themselves with helplessness. But the injections successfully reduced the cancerous mass by 70 percent.

In November 2012, AJ, Becca, Nick and Georgia moved to Seoul, Korea, for two months so Georgia could receive proton therapy at the National Cancer Center and chemotherapy at Severance Hospital. Upon their return to Manila, chemotherapy and more P-53 injections followed. Georgia’s treatments ended in June 2013.

“We were fortunate to be in the right place at the right time for Georgia’s initial cancer treatment,” says Nick. “And now we’re in the right place at the right time for maintenance treatment. We can’t fault the NHS for anything, really.”

Since the family’s move back to the U.K. in June 2014, Georgia and Becca have traveled by train every three months to Birmingham Children’s Hospital for an MRI scan of Georgia. “All those, so far, have been clear,” Nick says with tremendous relief in his voice. “There’s no sign of cancer cells.”

Georgia’s MRIs will continue to be conducted every three months until June 2016. Then MRIs will be done every four months.

Until September 2015, every MRI had been under general anesthesia. In fact, “She’s had 85 general anesthetics since she got sick more than three years ago,” Nick says. But on that September day, Nick accompanied Georgia to Birmingham. There, he was surprised to learn the health care staff had overlooked scheduling an anesthesiologist.

“So, this time, they decided to go without anesthesia,” says Nick. “And she was absolutely fabulous. She didn’t move at all for 50 minutes total. And she was able to leave straightaway. There was no recovery period. No feeling groggy. Now, it’s great she’ll no longer have to have anesthesia.

“And afterwards, we stopped at a TGI Friday’s and had a daddy-daughter lunch,” he says. “And she loved it. Just like any other 6-year-old girl.”

WEEKLY WEB REVIEW – WEEK 50

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping patients from around the world fight aggressive forms of cancer and giving them hope for a better future.

YOUNG CANCER PATIENT GETS BRAVERY AWARD

The courage of Sam Addison, a 3-year-old toddler from England who is being treated for an inoperable brain tumor, has been recognized with a special award from Cancer Research UK Kids & Teens.

Sam was diagnosed with astrocytoma just under a year ago. It was revealed when his parents noticed his left side was weaker than his right, and a scan revealed an inoperable 5cm by 5cm tumor in his brain. His dad said: “The doctors broke the news that his tumor is inoperable, removing it would cause far too much damage and leave him with no quality of life. However, they said he fits the criteria for Proton Therapy at the age of 8. We have been told to keep a close eye on him and watch for any new symptoms as he will start chemotherapy should it show signs of change.” Sam, who calls his tumor “Naughty Bean”, has had lots of tests, a biopsy on his brain and regular physiotherapy sessions to help with his movement, as it’s painful for him to use his left arm or to walk far. “After hospital appointments he asks us if they’ve taken away his naughty bean. He is too young to understand it all, ” his dad said. Now, for the bravery he has shown during his treatment, he has received Cancer Research UK’s Kids & Teens Star Award. His dad nominated him for the award and says his son has never complained during treatment. “When Sam received the award, I explained to him that it was from his doctors for being so brave while in hospital, he loved it and was carrying it around for some time as he was proud of his little star”, he said. The Cancer Research UK Kids & Teens spokesperson said: “Sam is a true ‘star’ who really deserves this accolade.”

Source: http://www.itv.com/news/calendar/2015-12-08/young-cancer-patient-gets-bravery-award/

 

13-YEAR-OLD WITH UNCONTROLLABLE WEIGHT GAIN BEGINS PROTON THERAPY

Alexis Shapiro is a 13-year-old girl from Texas, USA, who has been struggling with hypothalamic obesity, learned in October that her craniopharyngoma had grown back. 

First diagnosed with the benign tumor in 2011, Alexis underwent an operation to remove it and emerged with a damaged hypothalamus, the part of the brain that controls when a person feels hungry or full. Within months she developed hypothalamic obesity, a rare, irreversible condition that caused her to gain weight uncontrollably. She put on 68kg in two-and-a-half years, weighing 113kg by the time she was 12. Despite extreme attempts to lower her weight through diet and exercise, nothing worked and her parents were afraid for her life. A sleeve gastrectomy in 2014 improved her health dramaticall, and she had a gastric bypass in 2015 to continue her progress. The family thought they were out of the woods until a routine MRI earlier this year showed that the tumor was back. The Shapiros applied to be part of a proton therapy study at St. Jude Children’s Research Hospital. “Alexis was so scared,” her mom said, “She did not want another surgery. Alexis spent 2 weeks in Memphis at St. Jude’s main campus undergoing tests, MRIs and PET scans before heading to an affiliated hospital in Jacksonville, Florida, where the proton therapy machine is located. Three months after Alexis completes treatment, she will return to St. Jude for evaluation, although it could take up to 2 years before its full effects are realized. But that is hope enough for the Shapiros. “If it works, there is an 80% chance of it not coming back,” her mom said. “And Alexis has been such a trooper, So brave!”

Source: http://www.people.com/article/alexis-shapiro-brain-tumor-st-jude

 

“DYE MY HAIR SILVER BEFORE I LOSE IT”

Beth Semikin, a 22-year-old woman who was diagnosed last June with sarcoma, a rare form of aggressive cancer in her back, is looking for a hairdresser to dye her locks silver before she loses it from chemotherapy treatment.

Beth was diagnosed on her mum’s 50th birthday just after finishing her third year university physics exams. Her cancer, which left her barely unable to walk and made her endure months of severe pain, was initially missed in an MRI in February and then finally spotted last June, but was thought to be benign. She had an operation to remove most of it, but later tests found it was malignant, and it then grew back to be double the size. In September, a doctor told her if the tumor in her lower back was inoperable, she would only have a 25% chance of survival, but luckily surgeons were able to remove the entire tumor in an 11-hour operation. Beth is now receiving proton beam therapy in Jacksonville, Florida. The NHS has paid for her and her mother to stay for the full 11 weeks in Florida where she has half an hour treatment, 5 days a week. Her brother and her dad will also be visiting for Christmas. A month after returning from the UF Proton Center in February, Beth will begin chemotherapy, and she hopes a hairdresser can color her hair grey before it starts to fall out. “I’ve always wanted to have silver hair,” she said. “So now it’s falling out I figured I may as well do something I wanted to do to it anyway.” The future is looking bright for Beth, who hopes to get the all clear in the next few years after 18 weeks chemotherapy. “I have a good prognosis. I’m so lucky as they don’t think it’s spread anywhere.”

Source: http://www.croydonadvertiser.co.uk/dye-hair-silver-lose-says-young-woman-fighting/story-28326703-detail/story.html

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/