WEEKLY WEB REVIEW – WEEK 21

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is giving hope to cancer patients from all over the world.

UK COUPLE WEDS DURING CANCER TREATMENT

David Leek and Bobbie Godden, a couple from the UK who flew to Jacksonville in Florida for cancer treatment, will be leaving the UF Health Proton Institute as Mr. and Mrs. David Michael Leek Sr. 

David was first diagnosed with a spinal tumor, called a sacral chordoma in 2014. After having it removed, it came back, and following a second surgery his doctor recommended he follow-up with proton therapy, a special type of radiation therapy. David and Bobbie arrived in Jacksonville about a month ago to start David’s treatment. The couple has been together for 13 years and have two kids but they had never married. “Obviously four years now of cancer, so then getting offered proton therapy in this country and then to come here and I think it was just the whole thing of having this treatment, closing one chapter and opening another,” David said. The two married last week on a staircase overlooking the Proton Institute’s lobby in Jacksonville. They exchanged vows in front of patients, doctors and friends they’ve met along the way. The Leeks were the first to ever tie the knot on-site at the Institute. Another patient wedding is scheduled at the same location on May 31. “I feel that we’ve uplifted people,” Bobbie said. “Everybody who comes here is pulling one way or another and for us, to do what we’ve done, it’s taken their mind off of that and given them something else over the last four weeks to focus on.” David has six more weeks of therapy left and he hopes it’s the cure.

Source: http://news.wjct.org/post/uk-couple-comes-jacksonville-cancer-treatment-weds-uf-health-proton-institute

  

CANCER PATIENT TURNED TO MARVEL CHARACTER 

During cancer treatment, young Kelly Murphy turned to Marvel character Deadpool for inspiration to help fight his cancerous brain tumor.

Kelly was diagnosed with a brain tumor in 2016 and underwent both surgery and chemotherapy. Doctors also recommended proton therapy, a state-of-the-art form of radiation that precisely targets the tumor. The young boy had to be still during the treatment so he wore a fitted mask that was connected to his treatment bed to help keep his head from moving. A Cincinnati Children’s employee painted it to look like Deadpool, a Marvel character. “I felt a connection because Deadpool had cancer too,” he said. Kelly was one of the first to complete proton therapy at Chincinnati Children’s Hospital. His cancer has been in remission for more than a year now, but he still holds onto his mask as a reminder of how brave he is.

Source: http://local12.com/news/local/local-cancer-patient-turned-to-marvel-character-deadpool-for-inspiration

 

TREATMENT FOR 18-MONTH-OLD’S RARE CANCER

Kendall Jolley, an 18-month-old baby suffering from an aggressive form of cancer, needs proton therapy in Florida, but her parents need help as they are facing huge amounts of debt after giving up work to care for her. 

Kendall was diagnosed in February with rhabdomyosarcoma, a rare form of soft tissue cancer, after her mom Kirsty discovered a three-and-a-half-centimeter lump while changing her diaper. Kendall’s parents had to reduce their working hours while their daughter started gruelling chemotherapy, and now face having to pay for flights and accommodation costs to travel to Florida for three months if doctors decide Kendall needs proton treatment to further shrink the tumor. Due to the awkward location of the tumor, in the connective tissue near Kendall’s genitals, doctors say it is highly likely the baby girl will be infertile when she grows up, and regular radiation treatment may not work. Her mom said: “When they started talking about Florida I felt shaken up; it will be hard to survive out there because we aren’t working. We have to pay for our flights to Florida and all that first, for me, my husband, daughter and three-year-old son Leighlan.” Despite the ordeal, Kirsty says her baby is a “fighter” and has not been sick once during her chemotherapy therapy or when she had to undergo blood transfusions. However the cost of keeping up with the many rounds of chemotherapy, surgery, and associated tests has put a huge emotional and financial strain on the family, and the added stress has taken its toll on dad Ryan who has recently been diagnosed with depression. If you would like to donate to help the Jolley family with the costs of Kendall’s treatment, please visit their JustGiving page here.

Source: https://www.cambridge-news.co.uk/news/cambridge-news/cancer-childhood-rhabdomyosarcoma-ormond-street-14696462

WEEKLY WEB REVIEW – WEEK 20

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 fight for their life. 

MOM’S ATTEMPT TO FUND DAUGHTER’S TREATMENT

Poppy, a 3-year-old girl from the UK, has been fighting brain cancer since she was just 16 months old. Her 22-year-old mom Elle Martin is now trying to fund life-saving treatment for her daughter, as she just learned that the tumor had spread. 

Poppy was diagnosed with cancer in July 2016 and has since undergone 72 rounds of chemotherapy to reduce the size of the tumor. Her mom Elle said: “Everything happened so quickly. Poppy started chemo exactly one month after she was diagnosed. She lost so much weight from the chemo, she was so sick. She was aware of what was happening to her but not why it was happening. She went from being a perfectly healthy child to all of a sudden having injections and chemo nearly daily.” Poppy has already lost sight in her left eye, and the tumor will also affect her memory, speech and non-verbal communication. Elle has just been told that her daughter’s tumor has grown on 14 parts of her brain, including the brain stem and pituitary gland, and Poppy now needs radiotherapy. Elle was told conventional radiotherapy would be too dangerous and would certainly leave her completely blind, which is why she is trying to raise £250,000 for groundbreaking proton therapy in Jacksonville, Florida, as it is not available on the NHS. Elle said: “This is a potentially life-saving treatment and could give Poppy a long and happy life. We could have a future with her. It would mean everything to us if we raised enough to go. Please help my little princess live a life free from this evil disease.” To help Poppy, visit https://www.justgiving.com/crowdfunding/poppysplea

Source: https://metro.co.uk/2018/05/15/mums-desperate-attempt-fund-toddlers-treatment-brain-tumour-spreads-7548986/

 

ENJOYING RETIREMENT AFTER SUCCESSFUL PT

Barry Osman, a 70-year-old grandfather from the Isle of Wight in the UK who travelled 800 miles for state-of-the-art cancer treatment, is praising the state-of-the-art treatment he received.

Barry was diagnosed with advanced prostate cancer and enlarged lymph nodes after a routine blood test 2 years ago. “I didn’t have any real symptoms but I hadn’t had a PSA test for two years, so while I was at the doctors for something else I asked for one. I had an MRI scan soon after the test, which showed a tumor in my prostate. Thereafter I had a full body scan that showed the two left lymph nodes were enlarged but thankfully the cancer had not travelled anywhere else”. Barry spent 3 months having hormone treatment to stop his body making testosterone, which fuels the growth of prostate cancer cells. The treatment helped to shrink the size of his tumor but not cure it. Determined to live his life to the full, Barry had started to research alternative treatments and became very interested in proton therapy. He decided to travel to Prague, Czech Republic for the pioneering treatment, which was not available on the NHS. “I was the first patient from the Isle of Wight to go to Prague for treatment. He underwent 21 ‘fractions’ over the course of 5 weeks and spent over £30,000 on his treatment and accommodation, but he rationalizes: “Some people spend as much and more on a car that sits in a garage but wouldn’t even think about spending that amount on their health and well-being, I know what I think was better for me.” The granddad of 4 is now fit and well and enjoying an active retirement.

Source: https://www.islandecho.co.uk/barry-enjoying-retirement-following-successful-proton-beam-therapy/

 

4-YEAR OLD FLYING TO FLORIDA FOR PT

James O’Conner, a 4-year-old boy from Lincolnshire in the UK who has been battling brain cancer for two years, has been sent to Florida for pioneering proton therapy in a bid to save his life as his tumor has returned. 

James was first diagnosed with a malignant brain tumor called anaplastic ependymona in February 2016, for which he was given a 75% chance of living at 5 years. He then had surgery to remove the tumor from the back of his head. He developed complications from the surgery, making him unable to fly to America for further treatment, and had 56 weeks of chemotherapy instead. James finished his treatment in March 2017, but the tumor was found to have returned 11 months later. His dad said: “When we went through it the first time the chemotherapy was arduous and long, and it was hard for him to go through. Then to be diagnosed as a re-occurrence was very difficult.” James has now been selected for proton therapy in Florida, and his family will travel to America for 9 weeks while he undergoes treatment almost every day. The NHS is funding the treatment and the travel for James’ parents, but the family need to raise around £8,000 to fund travel for James’ twin brother Joshua. The treatment is already underway and expected to last until mid-June. James’ dad said that the treatment has been going well so far: “He deals with everything that is thrown at him with a smile on his face. It’s hard to see your son being put to under anaesthetic every day because he has cancer, it’s not an easy thing. We try to make the best of a bad situation seeing him smile and being cheery helps us get through it.” To donate visit www.justgiving.com/crowdfunding/jamesoconnor

Source: https://www.lincolnshirelive.co.uk/news/health/four-year-old-lincolnshire-boy-1566389

WEEKLY WEB REVIEW – WEEK 19

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is giving hope to patients battling against cancer. 

MOTHER RECEIVING PROTON THERAPY

Hauli Gray, a mother from Oklahoma who has been fighting breast cancer for almost a year, has recently received a bit of good news, as the ProCure Proton Therapy Center has decided to cover the costs of her specialist treatment. 

Hauli has already undergone multiple treatments, including surgery. “Not only did I lose a breast, that’s a part of me that’s gone forever. And, it’s trying to get over that. You almost want to feel shame because it was like you were whole and now you’re not,” she said. She now needs radiation therapy to complete her treatment. Her doctors feel that proton therapy is the only real option for her, because her cancer is so close to her heart and they fear traditional radiation would put her healthy organs in danger. Hauli was supposed to start her proton treatments six weeks after her surgery, with each day that passed putting her more at risk, but her health insurance denied her claim for the treatment multiple times. Fortunately, Hauli recently received a bit of good news, as she learned last week that ProCure Proton Therapy Center will generously cover the costs of her treatment. She is expected to start treatment early this week.

Source: http://kfor.com/2018/05/09/oklahoma-mother-battling-breast-cancer-receives-good-news-about-proton-therapy-treatment/

BEATING CANCER AGAINST ALL ODDS

Denise was diagnosed with breast cancer in 2012 after she felt a painful lump on the lower part of her collarbone. Doctors initially told her it was just a swollen lymph node, but she knew there was something more to her pain.

After many requests, her doctor completed a biopsy of the lymph node, followed by PET scans, which ultimately revealed breast cancer. The treatment included a combination of surgery, chemotherapy and radiation therapy. Determined to beat cancer, Denise became her own advocate putting her lawyer skills to test. She questioned her doctor as to why her breast cancer was classified as stage 4 and not stage 3. “I argued as to why I was not Stage 3. The doctor explained that they don’t use the word ‘cure’ when treating Stage 4. I told him my cancer would be cured, therefore, my cancer is Stage 3,” Denise said with a laugh. “After they found the tumor, I began chemotherapy which lasted for 6 months, followed by a double mastectomy,” she said. Then, her radiation oncologist initiated the final phase of Denise’s treatment plan, and recommended a combination of traditional radiation for her chest wall followed by proton therapy. As proton therapy exposes less radiation to the heart, lungs, bone and healthy tissue, breast cancer patients have a lower risk of potential side effects such as heart disease or reduced lung function. As a result, Denise was able to maintain her quality of life during treatment and continue working. She completed a total of 7 treatments over the course of 7 days. Today, she is busy going to her 14-year-old son’s baseball and soccer games.

Source: http://www.protonpals.org/2018/05/08/denise-hansen-against-all-odds/

 

MOTHER BEATING CANCER WITH PT

Mary Alston, a mother from Wisconsin, said she feels almost back to normal after beating cancer with proton therapy. But she didn’t learn about the diagnosis, until it was almost too late. 

When her depression started to worsen, Mary’s doctor changed her medication and increased the dosage. As nothing helped, Mary decided to take her own life on Christmas Eve. “I was just like nobody should have to put up with this, and that’s when I decided I was going to take some pills,” she said. Her daughter knew something was up and called police to find her and take her to the hospital. She woke up the day after Christmas and found out she had brain cancer after a doctor did a CT scan. She underwent surgery the next day to remove the tumor. Its location explained all her symptoms of depression and mood swings. A few weeks after the surgery, she received proton therapy, a very precise form of radiation. Her treatment lasted 6 weeks, and as of April 16, she was cancer-free. She now feels almost back to normal and is very grateful. “I’m grateful that my daughter called police. I’m grateful that that doctor ran that scan and I’m grateful to be here today,” Mary said. Given the second chance, she has a new view of life and she wants to use her journey to help others. “I’m hoping that my story will help someone else that is going through anything similar,” she said.

Source: https://www.kshb.com/news/national/suicide-attempt-leads-to-mothers-brain-cancer-diagnosis?page=2

WEEKLY WEB REVIEW – WEEK 18

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is raising the generosity of communities to help patients overcome cancer. 

YOUNG DAD RECEIVING CANCER DIAGNOSIS

Zachary Rizutto from Southwest Florida welcomed his daughter Roxanne with his wife Melissa a little less than a year ago, but just a few months after her birth, he got an unexpected diagnosis.

After experiencing minor blackouts, Zachary went for an MRI and doctors located a brain tumor. A biopsy confirmed their worst fears: it was cancer. A surgeon was able to remove most of the tumor, but cancerous cells remained in portions of his brain crucial to his vision and memory. Oncologists recommended proton therapy to directly target and eradicate those cells and hopefully send the cancer into remission. Zachary chose to travel the University of Pennsylvania to start the treatment where they could stay with family because it is not available in Southwest Florida. Before he could even get started, his healthcare insurance denied coverage for the procedure, which will total around $125,000. The radiation oncologist treating Zachary said proton therapy will allow him to target just cancer cells and not put the healthy parts of the brain at risk for potentially long-term side effects. He and oncologists around the country say they are routinely seeing private insurance companies deny coverage for patients like Zachary, who are in the most productive years of their life. Zachary and his wife raised more than half of the cost of treatment on a Go Fund Me page. He began therapy in mid April, which will last for six weeks. The couple will have to pay the remainder of the balance on the treatment within six months.

Source: https://pilotonline.com/opinion/columnist/guest/article_d6267bec-3f5d-11e8-aec4-579f21fb0bfa.html

 

€100,000 LIFELINE FOR BRAVE AARON

The family of Aaron McMahon, a 17-year-old from East Cork in Ireland, will be eternally grateful that their local community and helpers further afield rallied around them in their hour of need.

When Aaron learned he needed a major operation on a life-threatening brain tumor that would cost €100,000, he didn’t imagine that within days of an appeal for donations, supporters would have raised the full amount. Aaron has been battling a one in a million type of cancer called chordoma. He has already undergone marathon surgery in Beaumont Hospital and travelled to Essen in Germany for specialized proton treatment to irradiate non-pre-irradiated static tumors in his head and spine. He has just learned that he needed another surgery in the US and was told it was vital. “It is his only hope,” says his dad, Paul. “Without this surgery, Aaron will die in a few months.” The €100,000 raised now means that Aaron can undergo the operation in June or July. “I am overwhelmed by the support of everyone,” said the teenager. “I never expected it, being honest. Everyone got behind us. “I’ll only have my mom and dad travelling with me this time. Nobody can come to see me. I’d like if my brothers, Andrew and Adam, could come over to the USA for a few days.” After the surgery, Aaron plans on making up for lost time. “I lost two summers of my teenage years. I want to make up for lost time. It would be good just to have the freedom to do stuff.”

Source: http://www.eveningecho.ie/life/100000-lifeline-for-brave-Aaron-3ce58f8c-8742-4741-8dbf-e867a3b04dbc-ds

 

RAISING £20,000 FOR CALLUM

The family of Callum, who has just turned 17, are launching a fundraiser to be able to take him to the USA for proton therapy to treat his brain tumor. Here is their testimony. 

Callum has a real passion for football and like most teenagers, he likes to enjoy life and have fun. Unfortunately that fun came to a sudden halt last year when he learned he had a brain tumor called pilocytic astrocytoma. On 7th July 2016, an MRI revealed a tumor the size of a golf ball in the center of Callum’s brain, who underwent life-saving surgery to have it removed. He recovered well from the surgery and after a few months, he started to get a sense of normality back in his life, returning to school and playing football. But in October this year during a routine follow-up, Callum learned that the tumor had returned and was growing again. Options of treatment like chemotherapy and further complex surgery were discussed but considering potential side effects, proton therapy proved to be the less invasive treatment available. However, proton therapy is currently only offered in the USA, with daily treatments for a period of anything up to 3 months. As the NHS only funds a few cases each year, Callum’s family are attempting to raise funds towards all the other costs associated with his treatment, such as flights, accommodation, insurance and daily living expenses while waiting for funding approval. If you wish to donate to help Callum overcome his ordeal, feel free to visit his Justgiving page.

Source: https://www.justgiving.com/crowdfunding/callum-smith-pbt