WEB REVIEW – A legacy of hope

Beth was diagnosed with a rare brain tumor known as craniopharyngioma when she was a college sophomore. After six weeks of daily proton therapy, which lasted from one to two hours each, Beth’s tumor is now smaller.

When Beth realized she was sick, doctors either didn’t believe her or couldn’t determine what was wrong. For several years, she kept a thick notebook of thoughts, online research and test results in an effort to solve the mystery of her symptoms. With her parents’ support, she pushed a California specialist for an MRI. The brain scan showed what Beth had always suspected, a brain tumor.

Beth immediately started researching the best place for her treatment. Her search led her to St. Jude Children’s Research Hospital, which offered her a treatment plan that included proton beam therapy in Florida, which would shrink or kill Beth’s inoperable brain tumor while preserving her quality of life.

Beth colorfully compares her first proton therapy treatment session to watching a scene from a science fiction movie unfold around her. Although the pristine white walls and state-of-the-art equipment conjure up images from the future, the technology will soon be a reality on the St. Jude Children’s Research Hospital campus. The hospital is currently building the world’s only proton center dedicated solely to the treatment of children.

“It’s exciting to hear that St. Jude is building its own proton therapy center,” says Beth. “St. Jude has given Beth hope, and that was more than any other therapy could offer,” says her mom.

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WEB REVIEW –Young girl with cancer brighteningother patients’ days

Five days a week, for several hours each time, 7-year-old Mia Spargo of Lake Jackson, Texas comes to get specialized proton therapy treatment at the Texas Medical Center.

With her mother by herside, she’s battling a rare form of brain cancer.

Mia is very sweet, with a laugh and smile that will warm your heart. And she is also a wonderful little girl who tries to brighten the days of other young cancer patients despite all she’sdealing with, including chemotherapy. “It’svery hard and kids stay a long time, and I understand how hard it is,” said Mia. “So I choose to use my birthday money to buy toys.”

Mia’s efforts were recognized by a foundation formed in honor of one of the young Sandy Hook shooting victims. She’s now the proud recipient of the Charlotte Bacon Act of Kindness Award.”I’m really glad to have it,” said Mia. “It means to me a lot and I will always have it.”

Mia’s mother, Marina, said her daughter’s battle with cancer has made her a different girl. She said she’s always been sweet, but her fight has made her more mature and thoughtful. It’s been a tough fight since Mia was diagnosed with cancer in September, but she is scheduled for her last round of chemotherapy next week.

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After a diagnosis turns family upside down, assistance is provided for whirlwind treatment

A flash decision had to be made by the parents of 3-year-old Jordyn Gourley: radiation treatments close to home or proton therapy more than 1,000 miles away.

“We were told by another cancer family,‘You only get one chance to do this right, don’t ever look back and have any regrets,’” said Jordyn’s mother, Kim. “So I said, ‘We’re moving to Texas.’”

Two days after Jordyn’s diagnosis, they planned to hop on a plane to the MD Anderson Proton Therapy Center in Houston, Texas.

Up until Labor Day 2010, Jordyn usually slept quite soundly. However, after several consecutive sleepless nights, concerned parents Kim and Eric took her to the doctor several times trying to find out what was wrong.

That Labor Day, Kim brought Jordyn to the emergency room after noticing that her eye was slightly turned. It was then that doctors discovered the mass, called a rhabdomyosarcoma, or rhabdo, for short.

Kim and Eric hadn’t known people close to them with cancer so the first thing they did was research. They were anxious to learn more about what would help their little girl.

“We quickly learned that proton therapy would be a huge benefit to someone with rhabdo, especially a growing child,”Kim said.

Jordyn’s sarcoma extended into her nasal passages and brain. Doctors deemed proton therapy ideal because it would target the tumor and essentially stop there, limiting neurological effects, Kim said.

Kim put the wheels in motion with the proton therapy center at MD Anderson and was soon informed by the team there that Jordyn was an ideal candidate for proton therapy.

“That’s when Compass to Carecame in,” Kim said. Compass to Care is a nonprofit organization that helps families around the United States when they are faced with the devastating news that their child has been diagnosed with cancer. The organization takes care of the logistics so each family can focus on their child and the treatment their child needs.

Compass to Care purchased plane tickets forJordyn and Kim the very next day and made all the living arrangements for thethree months of treatment far from their Iowa home. It covered travel costs and housing at the Ronald McDonald house and provided spending money for a rental car and food while in Houston.

“I had so many other things I had to sort out in my mind,” Kim said. “Taking away the burden of booking everything was amazing support that we needed right then and there. It was seamless.”

Jordyn’s brothers, Gannon, 4, and Cohen, less than a year old, stayed home with Eric and Kim’s father, who moved in to help out. “It was a tough pill to swallow, knowing we only had two days to prepare for three months apart,” Kim said.

Phone calls and Skype were a common pastime to keep the family connected, but the time spent apart took its toll.

“Jordyn, no matter how annoyed she was with her brothers, would cry at night saying, ‘I miss them. I miss my dad. I don’t want to be away from them,’” Kim said.

“Compass to Care helped bring Eric and the boys down to Texas for an entire week so we could spend time together,” Kim said. With the difficult journey ahead, it was a relief.

Jordyn has had clear scans since September 2011, and Kim is thankful life is almost back to normal for the Gourley family.

WEB REVIEW – Raising funds to honor their son

To honor their son who died with cancer after many treatments, including proton therapy, a couple decided to raise funds to start a music therapy program at Stollery Children’s Hospital.

In 2011, Aidan Barnes was diagnosed with undifferentiated sarcoma on the back of his skull.

When he stopped responding to chemotherapy, he was referred to the Massachusetts General Hospital for proton radiation therapy, as it was easier on his body than traditional radiation therapy. When the Barnes accompanied Aidan to the hospital, they saw him respond to music therapy.

« He just got to be a kid. He just got to play and have fun », his mom said. She added that it helps patients express emotions they would otherwise be incapable of and gives them something enjoyable that has nothing to do with their treatments.

When the Barnes family returned to Edmonton, they wanted to continue with music therapy at the Stollery, which had tried out the program, but couldn’t keep it running because of lack of funding. « We thought this has to be a program at the Stollery. We had spent so much time there and it was such an amazing program that we thought it was something that he had to have when he got back here, » they said.

While in Edmonton, the Barnes found out that Aidan’s condition was terminal, and he passed away on Dec. 13, 2012, a few days before his second birthday. After a few months, they decided to help support music therapy at the Stollery, and began raising funds with the goals of providing two full-time therapists, and any additional materials and backing they need.

Currently, they have raised more than $8,000 for this cause. “This is a way my husband and I can honor our son,” Aidan’s mom said.

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WEB REVIEW – « I Had Cancer »

I Had Cancer is a cancer support community that empowers people to take control of their life before, during and after cancer. Peer-to-peer support is crucial because it allows to share firsthand experiences about treatment, side effects, long term effects and more.

Cancer can be isolating and scary, but I Had Cancer helps anyone who has been affected by cancer find real support and real answers from those who have been in similar situations. The mission of I Had Cancer is to empower anyone who has been affected by cancer and help them find the support and answers they need from people who have experienced similar situations.

I Had Cancer wants to help either fighters (people currently diagnosed with cancer who are looking for information and support), survivors (people who have overcome their diagnoses and are looking for continued support or hoping to inspire and help others) or supporters (caregivers or supporters who have been with their loved ones through their cancer diagnoses and are looking for support or to exchange information).

This cancer support community all began when Mailet Lopez was diagnosed with breast cancer in 2008 at the age of 33. She had great support from family and friends, but still found that they couldn’t fully understand what she was going through. She spent a lot of time searching online, but couldn’t find a resource that easily connected her to someone who could answer all of her questions.  It was only by chance that Mailet found her cancer hero – a breast cancer survivor who was the same age as her and happened to be in the same waiting room.

It made Mailet realize that when it’s a matter of life and death, nothing should be left up to chance and she decided to build IHadCancer.com with founder Anthony Del Monte.

In less than two years, the I Had Cancer community has grown to thousands of members in more than 110 countries. In 2012, it was recognized by the Webby Awards as the Best Community Website and in 2013, Parade Magazine listed I Had Cancer as one of seven social networks that could save your life. More importantly, it has made a difference in the lives of its members

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