Five year cure, …really?

Five-year relative survival rates describe the percentage of patients with cancer that are alive five years after their disease is diagnosed. Use of 5-year survival statistics is more useful in aggressive cancers that have a shorter life expectancy following diagnosis (such as lung or pancreatic cancer) and less useful in cases with a long life expectancy such as prostate cancer.

When a patient achieves that magical 5 year survival mark, everyone celebrates the milestone and they are considered by most people to be “cured.” That is not necessarily accurate. What it means is exactly what it implies: They have survived five years since being diagnosed, nothing more. The average age at diagnosis of cancer is 6 for children and 66 for adults. While the chart at the right shows great progress in five year survival rates in childhood cancer from one period to another, it is only comparing five year survival rates, nothing more. While it gives some comfort that we appear to be making good progress, it does not really measure survival beyond a five year period. Using a standard five year survival rate for cancer will take an adult diagnosed with cancer up to age 71, but it only takes a child up to age 11. Has the child really “survived” and beaten cancer? Sadly, the answer for a large number of children is, “No.” We need a more accurate “survival” measurement for children. Kids cancer is not the same as adult cancer and survival for children must last much, much longer than just five years. As we do today, using a five year survival rate for childhood cancer grossly discounts the pitfalls that lay ahead for up to 95% of the survivors. When it is communicated in a way that others outside of the childhood cancer community can fully understand the long term impact cancer has on children, only then will we finally make childhood cancer a real priority. Let’s stop hiding from the reality of childhood cancer by using unrealistic five year “survival” rates. True progress in surviving childhood cancer can not be measured by only looking at the five year period from diagnoses. Today, advocates and medical professionals frequently cite 83% as being the average survival rate for children. In reality, the 30 year survival rate is only 65% overall. A long term survival rate such as this gives a much different and more realistic perspective to the general public who we rely on to help fund research. We’d love to see the American Cancer Society or even the National Cancer Institute to step up and address the need for looking at a more realistic method of measuring survival for children.

The following article was written by CJ Colton in February 2013. Her son is still fighting cancer today and it appears there is no end in sight. It highlights what a child goes through just to get to the five year “survival” point. Studies have proven that survivors of childhood cancer actually are fighting effects of their “life-saving” treatments for the remainder of their lives:

Read More … Five Years Is Not Enough

Ryan Tannehill surprises young cancer patient

FORT LAUDERDALE, Fla. (WSVN) — A young boy thought he couldn’t be any happier on his final day of chemotherapy, until Dolphin’s quarterback Ryan Tannehill paid him a visit.

It was a memorable moment inside Chris Evert Children’s Hospital in Fort Lauderdale, Wednesday, for a young boy who was happy to be done with the toughest battle of his life.

Josue Cruz, the 10-year-old cancer patient, was thrilled his sports hero showed up to celebrate with him. “What’s up?” said Tannehill. “What’s goin’ on? Congrats, you look great! What’s up?”

Cruz ran up to Tannehill and gave him a hug.

Tannehill and his wife, Lauren, made a guest appearance at a Dolphins-themed party that the pediatric cancer center staff threw for Cruz. “Today was a big surprise for me,” said Cruz. “I never thought you were going to be here. Who told you to come?” Cruz asked Tannehill.

“Who told me to come?” replied Tannehill. “Well, I heard you were having a big party, a big celebration for finishing up your chemo.”

Cruz was diagnosed with Hodgkin’s lymphoma back in April and was undergoing chemotherapy and radiation since then. But despite his young age, he carried a brave perspective on the potentially deadly disease. “I met a lot of people that had cancer and that were cured,” he said, “so you know that made me say, ‘No, I’m gonna beat cancer. I’m not gonna let cancer take me away.”

This star surprise wasn’t the first time Cruz and the quarterback met. The two formed a special bond over the summer at the pro-quarterback’s Procamps Worldwide Event, held in partnership with Broward Health. By the end of the two-day football camp, Cruz went to a VIP luncheon as Tannehill’s guest.

Months later, the two got back together for a day Cruz will never forget. “There’s just something really special about Josue,” said Lauren Tannehill. “He’s an amazing kid, and he’s totally inspirational for Ryan and I.”

The Tannehills also surprised Cruz and his family with tickets to Thursday night’s Dolphin’s game against the Bills.

Jimmy Fallon sends video to Va. boy with cancer

Tonight Show host Jimmy Fallon sent a video to a 13-year-old Leesburg boy with cancer.

Mathias Giordano was diagnosed with Osteosarcoma in July of 2012. He’s endured countless rounds of radiation and chemotherapy and had to have his right leg amputated below the knee.

“Yo, Mathias. This is Jimmy Fallon. I heard you’re a big fan. I think that’s cool,”

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Team Mathias on Facebook.

Lauren Hill’s Big Day Has Arrived

Lauren Hill: One More Game

When someone dies, we eulogize and celebrate her life. When she’s dying, we muse about her death. We talk about what could have been and should have been and weep for what never will be.

But Lauren Hill is still here. So she’d rather talk about life, about what is. And on Saturday morning, as she drove with her family from their home in Lawrenceburg, Indiana, to Cincinnati for Sunday’s game, she wants to talk about basketball.

“Is it 2:00 on Sunday yet? Is that the buzzer to start the game? Is the whistle being blown to toss the opening tip-off?” Lauren said. “I’m so glad it’s here, but I try not to think that far ahead. Right now, I’m thinking about going to practice and being with my team. We have a walk-through today.”

Hill is that woman you’ve heard about somewhere, maybe on ESPN, maybe on Facebook, maybe in the newspaper, perhaps on early morning TV. She’s the college freshman basketball player who was diagnosed with brain cancer her senior year of high school, after signing with Division III Mount St. Joseph University in Cincinnati.

She’s the girl whose parents, after her tumor spread and she was given only a few months to live, worked with her college coach, the opposing team’s coach and the NCAA to move her team’s opening game up by two weeks in the hopes that she will still be strong enough to suit up for one collegiate game.

The 19-year-old has been giving interviews and fighting publicly in the hopes of bringing attention to the rare form of brain cancer from which she will die. And she’s the girl whose story garnered so much attention that the site of Mount St. Joe’s Sunday game against Hiram College was moved to Xavier University’s Cintas Center, and the 10,000-seat arena sold out within a day.

But Hill is more than that freshman you heard about somewhere. She’s also a daughter to Lisa and Brent, and a big sister to Erin, 14, and Nathan, 17. She’s a soccer fan, has a creative eye and loves music, all types of music, just not screamo.

She’s a fan of the Harlem Globetrotters, was painfully shy before her diagnosis and is a wiz with Photoshop. She likes to shoot videos and edit them for her family, and you know that image that’s been going around online, the one of Lauren standing with her hands on her hips in her high school uniform, the one that was shot from behind and adorns #1More4Lauren images on Twitter? She designed that herself. “I’m really proud of that,” Hill said.

Since the date of the game was officially moved, Hill has been counting down the days, anticipating the opening tip-off, living for Nov. 2, some might say. But she knows as acutely as anyone that tomorrow is not promised, and when game day comes, she might be too sick or too weak or in too much pain to play.

The tumor causes migraines and has weakened the right side of her body. The medicine makes her nauseous; it makes her joints ache and her face and body swell and does little to dampen the pain. She has good days and awful days and she tries to make the most of both.

Around her family, she is stoic and pragmatic but sometimes breaks down beneath the weight of it all. She doesn’t know how tomorrow will go, so she rarely allows her mind to wander too many hours ahead. “I still can’t believe how big this is,” Hill said. “I feel like I’m in a dreamlike state most of the time. But I just try to think about right now.”

And right now is 24 hours before tip-off of the biggest game of her life.


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Brave seven-year-old girl shaves her head to support little sister after describing the day she was diagnosed with leukemia as ‘the worst day of my life’

A seven-year-old girl has shaved off all her beautiful red hair to show her support for young children suffering from cancer – including her little sister.

Hannah Gorsegner from Middletown, New Jersey, took the brave decision because she wanted to show her support for five-year-old sister, Natalie, who was diagnosed with acute lymphoblastic leukemia in August 2012 and is now in remission.

Hannah, who said the day her sister was diagnosed was ‘the worst day of her life’, announced her decision to shave her head during an appearance on the Today show last month.

‘I’m going to shave my head,’ she said. ‘This is one of the ways I can help kids with cancer and inspire them to be brave.’

The shaving took place last Wednesday during a Shave For A Cure event held by the Arms Wide Open Childhood Cancer Foundation at the New York Stock Exchange.

Sister Natalie even got to join in and at one point used the clippers to shave her giggling sister’s head.

After Hannah’s head was completely shaved, she had glitter poured on over freshly bald head while the entire floor of the stock exchange applauded.

She wasn’t the only person to have her head saved that day and the others included several little boys and several businessmen who were supporting the cause.

The event raised over $350,000 for childhood cancer, and Hannah donated her red hair to wigs for kids.

‘I hope that someone’s going to be wearing my hair and that they’re going to feel happy about it.’ she told Today.

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Facing death, Lauren Hill teaches us life lessons

You are moved, momentarily. You shake your head and offer a quick prayer for Lauren or, more likely, for the blessing of your own kids’ good health. Then you can’t find your keys and soccer practice starts in 15 minutes and you have to stop at the cleaners and your car has no gas, and just like that the story of Lauren Hill retreats to the big warehouse in your head, joining the rest of the jumble. We are so well informed, yet so poorly versed.

You are who Lauren wants to speak with. It is to you she is dedicating the rest of her brief and precious life. Have a minute?

“One January night, I was having a meltdown,” she begins. “I asked God if I could do anything. I didn’t know what He sent me here for. I wanted to know what He sent me here for. Whatever you sent me here for, I’m ready to do.”

Does she have your attention now?

“What keeps me going is remembering why I’m here,” she says.

Lauren Hill is here for all of us. She’s a soul engine, and all she wants to do for the rest of her life is remind us how good we have it, and that we need to make that goodness matter, for everyone. That would include kids with the cancer she has, which is inoperable and incurable and swiftly fatal and receives very little attention.

To that end, she is doing all sorts of interviews, locally and nationally. Her cause has become a phenomenon, its apex occurring Nov. 2 when she plays in her first college basketball game. The game was moved from Nov. 15 at Hiram College to Xavier’s Cintas Center to accommodate a packed house and Lauren’s distilled timeline. The 10,000-seat arena sold out in less than a day.

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Fighting Childhood Cancer Until There's a Cure!