Wisconsin family finds warmth in the Windy City

Her son Hunter’s significant weight loss and debilitating headaches were signs of concern for Amy High. After numerous visits to emergency rooms and doctors’ offices, and an incorrect diagnosis of migraine headaches, an MRI revealed the cause of these troubling symptoms: medulloblastoma — a brain tumor — diagnosed in June 2013.

Immediately after the diagnosis, 14-year-old Hunter was sent by ambulance to the children’s hospital nearest the family’s home in Nekoosa, Wisconsin. There, surgery was performed to remove the tumor.

Doctors told Amy and her husband Eli that the surgery had gone well, but that the protocol for medulloblastoma is to treat the entire brain and spine with radiation. This is the case, even if no tumor is present on an MRI post-surgery.

“Hunter’s oncologist said to us, ‘If my child had the same diagnosis as Hunter, I would send him to have proton therapy,’” said Amy. “She said there would be travel involved. We could have traditional [photon] radiation closer to home. But when it’s your child — our view was that we didn’t have any other choice than to do what was absolutely best.

“And if she felt that was absolutely best, then we would do whatever we had to do.”

Amy, Hunter and Amy’s mother traveled to the CDH Proton Center, in the Chicago suburb of Warrenville, Illinois — about a four-hour drive from Nekoosa — for six weeks of proton therapy treatment.

“There’s nothing like a teenage boy having to share a room with his mom,” said Amy with a laugh. “But we did gain a lot of closeness from that whole experience. Someone donated Chicago Cubs tickets, so I got to take Hunter to see his first Cubs baseball game. We got to see a lot of the sights of Chicago, and we spent time on the beaches of Lake Michigan together. I tried to get him out every day and make the best of a not-so-great situation.”

Amy and Hunter found the staff at the proton center friendly and welcoming.

“They make you feel like family and look out for you — especially being far away from home,” said Amy. “The doctors were incredible to work with. And Diane, the woman at the front desk, was very helpful. Anything we needed, she would work to help us. On the days that Hunter was feeling down, she would talk with him and encourage him.”

Diane keeps in touch with the family to see how Hunter is doing, Amy added.

Today, Hunter is back home and receiving chemotherapy. The ninth grader attends school when he feels up to it, says Amy, sometimes going for a half day, then getting tutoring and completing online coursework at home.

“It’s been difficult going through this,” she says. “But knowing where we could be, we appreciate where we are. We try to make the best of it.” Amy and Eli also have two daughters, ages 12 and 7.

Hunter, an athlete, has had to give up playing football and basketball, and running track — at least for the time being. “Now he’s into video games and music,” says Amy. “But that’s okay for now.”

Amy credits the organization Compass to Care with helping them move to lodging in Chicago that was closer to the proton therapy center, which was easier for Hunter to cope with physically. “If it wasn’t for them, financially we could not have done this,” says Amy.

WEB REVIEW – Mom fights brain tumor for her family

Catherline Ledlow, 33-year-old mom from Oklahoma, had just given birth to her second child when she found out she had a rare form of cancerous tumor growing on her brain : an oligoastrocytoma.

Catherine wanted the best treatment possible to be able to live a full long life with her husband and children, and turned towards proton therapy. Doctors at Oklahoma City’s ProCure Proton Therapy Center said the tumor is treatable and that Catherine should be able to enjoy a good quality of life. 95% of the tumor has already been removed through surgery, and proton therapy is aimed at stopping the remaining 5%.

Catherine is not taking any chances. She has been making videos for her two children, just in case the treatment fails. “The moments that we are having are so irreplaceable,” she said to them in a videotaped conversation. “I want to show you how strong I am”.

It’s her hope that her messages will someday be only a reminder of a tough time in her life and not a memorial to a life cut short. “I’m planning on being here, but there is a part of me that has to think about if I’m not,” said Catherine. “It’s hard to think that I may not be here to finish raising them and I want to meet my grandkids, and I want to get old with my husband. And to think that those opportunities might be taken away is really hard.”

She admits some days are more emotional than others, but overall she is trying to stay positive in this fight for her life. And, after undergoing 12 of 26 planned radiation treatments, Catherine certainly hasn’t lost her sense of humor. “This is my waffle face,” she said. “It’s because you have a mask on your face that sort of grips you down to the table so you can’t move your head very much – so that’s why I have my waffle face.” Catherine is also taking oral chemotherapy. She does it all with a smile, for more than herself : for her family.

Catherine is also trying to raise money for the Oklahoma Brain Tumor Foundation and for clinical trials at the Oklahoma Medical Research Foundation. To sign up for donations, visit http://www.okbtf.org/ and www.OMRF.org.

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A year after a Christmas wish, time to live like other little girls

Georgia Halliwell-Paget’s wish from Santa this year is like that of any other 4-year-old girl. A Barbie doll. More specifically, a purple Barbie with wings.

“And a pink train and red yo-yo,” adds her dad, Nick. “She’s really into pinks and purples. She’s a real girly girl.”

Nick and Becca, his spouse, are ecstatic. Georgia is back to being a bouncy little girl. Fun, happy  and “full of life,” he says. “Full of beans,” Becca says.

It was so different just one year ago. Then, all Georgia wanted from Santa was for her owie to go away.

Christmas was not at their tropical Manila home. It was spent 1,600 miles away in snowy Seoul, Korea. Georgia was nearing the end of her 33 rounds of proton treatments at the National Cancer Center to combat tumors on her spine and pelvis. Her treatments were funded by the generosity of her schoolmates, friends, family — and strangers.

“She’s made remarkable progress,” says Nick. “The actual owie is gone in terms of the pain she was in. The tumor’s physically there on her spine. But it’s metabolically inactive. The pelvic tumor was irradiated completely.”

There’s a 50 percent chance the cancer may return, Nick notes cautiously, and he and Becca can’t become complacent. They’ve already had two scares.

The first occurred in June 2013. Georgia was beginning another course of P53 gene therapy “as a proactive measure,” Nick remembers. “Six rounds of direct injections into the tumor. But she had a really bad reaction after the first treatment. High fever. Bad headaches. She wasn’t eating. She was very dehydrated. She was pretty lifeless for a while.”

P53 gene therapy had played a key role in Georgia’s cancer care. It had been administered in advance of the proton beam treatments, shrinking the size of the pelvic tumor. But this time, Becca and Nick started to second-guess themselves about more gene therapy. “Should we have gone down that road?” Nick says.

But Georgia’s strength returned in about 10 days, and Becca and Nick agreed with doctors that two vials of P53 gene therapy could be given intravenously. She tolerated the medication, but they knew direct injections in the tumor were preferred. So, the last four treatments were direct injections guided by CT scans. And Georgia endured with few harsh side effects.

The second scare was in November. “Georgia had a nasty viral infection,” says Nick. “The symptoms were very similar to what it was like in the beginning when she was first diagnosed. A severe fever. Pain in the legs. She lost a kilo in weight over five days. But she’s recovered and is back up to 12.4 kilos” [about 27 pounds].

Despite those two bouts, Georgia has gone on living her life with gusto. She traveled to the UK and Greece with her brother, AJ, and her parents the week after her final P53 injection.

“She was a flower girl at my sister’s wedding in Greece,” Nick recalls. “She looked absolutely beautiful. She was the only flower girl with no hair. She wore a special sparkly, glittery headband.”

Nick pauses and adds, “It was an incredibly emotional time with all of our family together. Nobody expected we would see that day.”

Georgia will never look back and be hurt or resentful about the 18 months her illness prevented her from being a normal little girl, Nick predicts. “She’s so full of life. She’s going to nursery. And learning ballet. And having play dates. And that’s normal life for her now.

“When I think back to April 2012, when Georgia was sleeping for 10 minutes at a time,” Nick continues. “She was screaming in pain. She couldn’t eat. She couldn’t walk. And when I look at where she is now. There is no comparison.”

Nick says he and Becca “are just incredibly relieved to see Georgia enjoying life so much and not having to spend all her time in hospital. She is a bouncy, fun-loving child who wakes up with a big smile on her face.”

To help Georgia stay healthy, she follows a strict nutrition program, he adds.

Nick and Becca realize that while one part of Georgia’s journey is over, the journey of keeping Georgia happy, healthy and cancer-free will continue for the rest of her life.

Friend’s regret about prostate surgery moves Wisconsin man to protons

You could say it was a good friend’s buyer’s remorse that prompted Bill Friedlander to change the course of his cancer care.

Diagnosed with prostate cancer in early 2013, the retired organic chemist was all set to begin photon radiation treatments. “I had the appointments and they gave me the Lupron,” he said. Lupron is taken to stop testosterone production in preparation for prostate cancer radiation treatments.

“But in the meantime, I was in contact with a friend,” Friedlander continued. “He had prostate cancer surgery. And his result was less than satisfactory. So, he was looking at other options had he not had surgery. And he suggested protons.”

Interestingly, none of the physicians Friedlander had consulted ever mentioned proton therapy, “particularly the urologist types.”

Like many newly diagnosed cancer patients, Friedlander turned to the Web and learned about the benefits and risks of proton treatments for prostate cancer. He phoned several proton centers from his Wisconsin home to see if his stage of prostate cancer could be treated with protons. One center mailed a copy of Robert Marckini’s book, You Can Beat Prostate Cancer. “If you read that book, there really is no other option worth considering,” Friedlander noted. “That was another point that convinced me.”

Every proton center he phoned appeared willing to consider Friedlander’s case until “I said I had an artificial hip. They said, ‘No, we can’t treat you.’ ”

Protons, he learned, are typically beamed through each hip to reach the prostate and deliver their cancer-killing energy. An artificial hip is a barrier to the proton beam.

But doctors at CDH Proton Center, A ProCure Center in Warrenville, Illinois, said they had a proton beam setup that could deliver proton beams to accommodate Friedlander’s artificial left hip. They would still deliver protons laterally through his right hip. But radiation technicians would shoot more protons from the proton beam nozzle elevated at a 60-degree angle to the groin — something akin to that scene in the 1960s James Bond movie, Goldfinger, absent the malicious intent.

Friedlander began nine weeks of treatments in April 2013. “The first treatment is a bit surprising, because you don’t know what to expect,” he noted. “You’ve left your modesty at the door.”

After about a half-hour of setup time “where you’re positioned on that table within 2 millimeters of where they want you to be,” the radiation technician triggered the proton beam. It was over before he knew it, Friedlander recalled. “The technician said, ‘Okay, you’re done now.’ It was absolutely painless.”

Like so many other men who have survived prostate cancer due to proton therapy, Friedlander is a huge advocate for the treatment. His PSA levels are back to normal. “And there were absolutely zero side effects, as far as I’m concerned,” Friedlander said. “The only thing was a little red spot where the beam was shot in. But that’s gone away.”

Friedlander contended that protons are effective against prostate cancers that are contained. “My doctors went through a great deal of examination to see there were no other hot spots in my body,” he said. “That the cancer hadn’t spread.”

A scientist by training, Friedlander offered this advice to newly diagnosed cancer patients: “The kind of treatment you pick has to be tailored to your particular cancer. For my cancer, I was certain that proton therapy was the answer.”

WEB REVIEW – Brain cancer patient saved by Proton Therapy

Thanks to surgery and proton therapy, Jeff Graf, 56 years old, overcame a clival chordoma, a rare type of brain tumor.

When Jeff thought he was having a stroke, he knew he needed to get help right away. During his check up, the scan revealed a mass in his head. Jeff was shocked when the mass was determined to be a chordoma, a rare tumor slowly growing from embryonic remains. He hadn’t had any typical symptoms and the detection of his chordoma was pure luck. To this Jeff said, “I believe in God, and I believe he put me here in the right place at the right time.”

Facing an uphill battle, Jeff turned to the experts at Indiana University Health for answers. He discovered a team of specialists, advanced treatment options and a level of care that few hospitals across the country could provide.

Knowing they’d need to use the most innovative techniques to restore Jeff’s health, doctors quickly mapped out a treatment plan that not only included delicate surgery, but also ultra-precise radiotherapy. Jeff described the staff members as amazing, noting, “Every day they greeted me with smiles and did everything to make treatment go as easily as they could.”

Jeff was first taken care of by neurosurgeons who carefully removed his tumor through his nose. He then began nine weeks of proton therapy at IU Health Proton Therapy Center in Bloomington, Indiana. Proton therapy was particulary indicated, as it allows to precisely deliver the radiation beam into the tumor and spare healthy tissue, thus avoiding critical structures and reducing side effects.

The last three weeks of proton beam treatment were a little rough, Jeff recalls. He felt generally “off.” Things tasted bad. He lost a little hair. But when that passed, he felt better and enjoyed outings in Bloomington with his wife.

Both the surgery and proton therapy were successful and, today, Jeff’s prognosis is good. He remains cancer-free and the only evidence of his treatment is the dark patch of hair that grew back against his head. He says he’s grateful for the state-of-the-art treatment he received and didn’t even know existed.

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WEB REVIEW — More kids treated with proton therapy

According to a study released by the Pediatric Proton Foundation (PPF) and the National Association for Proton Therapy (NAPT), the number of children with brain and spinal cancers treated with proton therapy in the U.S. has risen 33% since 2010.

465 pediatric patients were treated with proton therapy in 2010 and 613 in 2011. In 2012, they were 694, 57% of them being less than 10 years old, with a curable brain tumor or axial sarcoma, the survey reports.

“Parents need to understand that proton therapy offers distinct advantages for their child’s treatment over traditional radiation,” said Susan Ralston, Executive Director of the PPF. ”As the mother of a young child who was diagnosed with spinal Ewing sarcoma and was able to receive proton therapy, my goal is to help other families by ensuring that they get good information about the options for their children.”

Conventional radiotherapy (X-rays) for pediatric brain tumors has been associated with long-term neurocognitive deficits, including decreases in IQ, difficulties with attention, processing speed and executive skills. Proton therapy is known for its tremendous advantages in treating certain pediatric cancers. The dose delivered outside the tumor is reduced, as well as the probability of secondary malignancies. This is especially critical for children, as the risk for long-term survivors to develop radiation-induced tumor may reach 25%.

“Even with 11 operating centers in the U.S. now,” Ms. Ralston said, “access remains an issue because as many as 3,000 newly diagnosed children might be candidates for proton therapy each year, but we do not have the capacity to treat all of them. The good news is that many more new centers should become operational in the next 5 years, which will allow more children to take advantage of this advanced technology.”

The survey reports that the 4 most common tumor diagnoses treated with Proton Therapy were ependymoma, medullablastoma, low grade glioma and rhabdomyosarcoma. 19% of the children treated in 2012 came from outside the US. ”This data reflects the growing international perception that proton therapy may offer an advantage in children with brain tumors and sarcomas.

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From our partners : Cancer patients to travel to UF Proton Therapy Institute from Norway

JACKSONVILLE, Fla. – In an agreement with the Norway Health Authority, UF Proton Therapy Institute will treat both children and adults who have rare tumors in the nasal and sinus cavity, skull, and brain.

Currently there are no medical centers in Norway that offer proton therapy, and for cancers in highly sensitive areas, proton therapy provides patients a superior treatment that also minimizes risk of damage to vision, hearing and brain function.

UF Proton Therapy Institute has a similar arrangement with the United Kingdom’s National Health Service, which has referred approximately 200 children and adults for proton therapy in Jacksonville since 2010.

“It is significant for both the advancement of proton therapy and our institution to be selected by our colleagues in Norway to care for their patients,” said UF Proton Therapy Institute medical director Nancy Mendenhall, M.D. “It signifies acceptance of proton therapy as the ‘gold standard’ of care for many kinds of cancer and it recognizes our medical expertise caring for patients who have cancers that in some cases are one in a million.”

Since opening in August 2006, UF Proton Therapy Institute has achieved international recognition for excellence in delivering proton therapy. The pediatric program is the largest proton therapy practice in the world, with an average of 25 children on treatment daily.

“Hundreds of people travel great distances to Jacksonville each year to have proton therapy,” said UF Proton Therapy Institute executive director Stuart Klein. “It is a testament to the clinical advantage of proton therapy to give patients the best hope for cure and to go on to live a normal, healthy life. It is also a testament to the professionals who deliver world-class health care to our patients daily.”

UF Proton Therapy Institute is a nonprofit organization affiliated with the UF College of MedicineUF, dedicated to delivering state-of-the-art cancer treatment and setting new standards for treating and curing cancer. The cancer treatment facility houses both conventional radiation and proton therapy, and delivers proton therapy to 110 patients a day.

For more information about the UF Proton Therapy Institute, please visit www.floridaproton.org, or call toll-free 877-686-6009.