Who Was Ben Ivy?

Benjamin (Ben) Franklin Ivy III graduated with a Bachelor of Mechanical Engineering degree from Cornell University and received his MBA from the Stanford University Graduate School of Business. He was President of Ivy Financial Enterprises, Inc., a Registered Investment Advisory firm in Palo Alto, California. Ben was a Certified Financial Planner and a Registered Principal of Associated Securities Corp. who specialized in investment real estate. He was a pioneer in the concept of comprehensive financial and estate planning through a very successful series of lectures and workshops.

Ben possessed great intellect and had the ability to communicate his thoughts and ideas to his clients. He was listed annually in “Who’s Who in America” for over 20 years. In November of 2005, Ben lost his battle with brain cancer. He had survived only four months after diagnosis. Ben set a true example of living life to the fullest. He is missed and continues to set an example for those who were fortunate enough to have known him. The Ivy Foundation was created by Ben and his wife, Catherine, in order to support medical research.

Learn more about the Ben and Catherine Ivy Foundation here.

Diamondbacks Pitcher Supports his Best Friend Diagnosed with Brain Cancer

With his best friend set to undergo surgery for a highly aggressive form of brain cancer, Diamondbacks pitcher Wade Miley was hoping and praying for a sign, some kind of indication that Johnnie Santangelo III was going to be all right.

This was early Tuesday morning. Santangelo was leaving Miley’s house for Barrow Neurological Institute. Miley told him he loved him, and on Santangelo’s way out the door Miley’s dog followed.

“You know how it is early in the morning; I didn’t really wake up good,” Miley said. “I remember him, in a daze I remember him looking back and saying, ‘Don’t worry, Sassy, I’m going to be back to see you.’ That just made me feel good. That comforted me. Him telling the dog that. That’s what stuck with me.”

A day after surgery, things are looking up. Doctors say they have removed the glioblastoma multiforme tumor, and concerns that existed pre-surgery about motor functions or vision problems have been mitigated. They think Santangelo is going to be OK.

“I’ve never been so happy in my life,” Miley said.

It has been a harrowing couple of weeks.

Santangelo and Miley have been best friends since childhood. Santangelo always went by “Little Man,” and it just happened he grew to 6 feet 5. Growing up in Louisiana, the two would hunt, fish, play sports and raise hell.

“Whatever you could think of that kids from the country would do,” Miley said. “There wasn’t a day that went by that we weren’t getting in trouble.”

Most recently, Santangelo, who was drafted by the Kansas City Royals in 2004 but never pitched professionally due to elbow problems, had been running his family’s mushroom farm in Louisiana. But then came the headaches. Bad ones.

“They checked out his nose, checked out his ears and sinuses and all that stuff,” Miley said. “One day his vision got all messed up. They called his dad. His dad thought he was (joking). They took him to the hospital and told him he had a brain tumor. Probably some of the worst news you could ever get.”

Miley heard the news about a half hour before the buses left Salt River Fields for the team’s trip to Australia, and the day after they returned Miley flew to Louisiana. He was worried about how his friend would look, but what he saw was the same old Johnnie. This gave Miley hope.

Every doctor Santangelo visited told him the same thing: the cancer was inoperable. They recommended a laser treatment. Miley mentioned it to Diamondbacks trainer Ken Crenshaw, and a few phone calls led them to Barrow’s Dr. Nader Sanai, who thought surgery was possible. They were told doctors would see him as soon as he could get to Arizona.

And so until Tuesday, Santangelo and his family had been staying at Miley’s house. He went to the hospital early that morning. Miley joined them later and stayed as long as he could, but he was scheduled to face the Giants that day and headed out in the middle of the afternoon.

There was concern about Santangelo not being able to move the left side of his body, but he put those to rest once he came to after surgery, picking up his left leg and fist-pumping.

“I let him squeeze my hand (Wednesday) with his left hand and he almost broke it,” Miley said.

Santangelo is having trouble focusing with his eyes heavily dilated, but doctors don’t think it will last. He watched Miley’s outing from the hospital on Tuesday night with one eye, cursing when Miley hung a slider that Brandon Belt crushed for a three-run homer in the first inning. But Miley settled down, got through seven innings and the Diamondbacks won, and after the game Miley delivered two game balls to his friend.

“He had both of them in his hands, juggling and messing with them,” Miley said. “It meant a lot when I handed those to him.”

Santangelo also gave Miley a hard time for not giving him a shoutout in his postgame interviews.

“He’s a big hunter, so he was like, ‘Get my name out there, I might get a hunting trip out of it,’ ” Miley said.

Miley said Santangelo, who has a 4-inch scar on the back of his head, will probably head home to heal and rest before coming back to start radiation and chemo.

“He’s doing about the best I can imagine,” Miley said. “I was scared to death about what I was going to see. He’s as good as he can be. He’s not out of the woods, but he’s a whole hell of a lot better than he was doing three days ago when that tumor was still in there.”

Link to the story on azcentral.com

 

Community Support is Everything

Outpouring of support for young W.Va. man battling brain cancer

Elaine Blaisdell

OAKLAND — The outpouring of emotional and monetary support from the community for 20-year-old Dylan Jones, who has been battling stage 4 glioblastoma brain cancer, has been tremendous, according to his mother Erika Graham of Oakland.

“I have been floored by the response from the community,” Graham said. “The support from Garrett County alone has been tremendous, every business has posted signs asking for prayer for him. I’ve been amazed by the support of the community, it has been really great. People all over the United States have said they are praying.”

Jones, described by others as a guy who would do anything for anybody, was diagnosed with glioblastoma in December 2012. He underwent surgery at Ruby Memorial Hospital in Morgantown, W.Va., a year ago, then underwent chemotherapy and radiation at Preston Robert Tisch Brain Tumor Center at Duke University in Durham, N.C.

While receiving treatment at Duke, Jones’ insurance coverage was exhausted and costs weren’t covered, Graham said. In October, Jones was doing great and there was no sign of the cancer, according to his mother, but around Thanksgiving he started feeling tingling and numbness on his right side. Following an MRI, it was confirmed that the brain tumor had returned and that cancer cells had spread to other areas of the brain.

“The doctors decided to change his chemotherapy and medicine to try to shrink the tumor but his body didn’t respond to any of the treatments,” said Graham. “He got home last Tuesday and we decided we have exhausted all treatment options. We are now doing alternative treatments now. We are praying and hoping for the best.”

Numerous fundraisers have been held in both Oakland and Keyser, W.Va., to help with medical expenses. Money from fundraisers currently being held will go toward the holistic treatments Jones is undergoing. Insurance doesn’t cover the costs of the alternative treatments, which cost $2,800 a month, Graham said.

“It is so very important that he doesn’t miss any dosages so we have to make sure we always have the money on hand to order what we need when we need it,” wrote Graham on the Dylan Jones Cancer Support Group Facebook page. “He is also on a very strict diet so we can only feed him organic fruits and vegetables.”

The biggest fundraiser thus far has been Dollars for Dylan, which is set up at the Wepco Federal Credit Union in Oakland. GiveForward, another fundraiser, has raised $2,915.

On the GiveForward blog, Graham said she is not giving up and asks people to do the same.

“Even though our hearts are crushed we are not giving up,” wrote Graham. “The pain I’m feeling right now as my heart aches for my son is unbearable but I’m determined not to lose hope. I don’t know what God’s plan is here but I sure hope it’s to prove he can make miracles happen.”

Jones and the news of his fight against brain cancer has gone viral on social media, so much so that #DylanJonesFight started trending on Twitter, according to Graham. Celebrities like country music singer Wynonna Judd and Duck Dynasty have retweeted #DylanJonesFight and country music artist Colt Ford has stated on Twitter that he is praying for Jones.

Other fundraisers include Thirty One, Pampered Chef, hoagie, T-shirt and window sticker sales, as well as cash bash and band benefits. A campaign on Booster.com that is selling T-shirts has garnered $490.

Basketball players from Union, Keyser and Frankfort high schools recently wore gray, which is the color for brain cancer awareness, during their respective games in support of Jones.

The Kenny Jones Band of Keyser played at Schmitt’s Saloon in Morgantown earlier this month and raised $247 for Jones, according to their Facebook page. The band has been holding various fundraisers for Jones throughout the year.

Upcoming fundraisers include a bake sale at 7-Eleven in Oakland Saturday starting at 8 a.m. and band benefit on Feb. 8 at the Black Bear Tavern and Restaurant in McHenry from 7 p.m. until closing. The Dylan Jones Cancer Fund Facebook page, which has 3,260 members thus far, has updates on additional upcoming fundraisers.

Jones is a 2011 graduate of Union High School and following graduation he worked on his grandfather, Roy Jones’ farm in Elk Garden, according to Graham.

Jones is the son of Craig Jones of Mount Storm, the stepson of Jeremy Graham of Oakland, the brother of Brianna and Wesley Jones both of Mount Storm, the great grandson of floyd “Buck” Jones of Elk Garden, the grandson of Roy and Priscilla Jones of Elk Garden and Ramona and James Hanlin of Mount Storm.

Anyone wishing to send cards or donate may send them to the The Dylan Jones Cancer Fund, 3976 Mayhew Inn Road, Oakland MD, 21550. Donations can also be made on the GiveForward website at https://www.giveforward.com/fundraiser/4yk3/dylan-jones-cancer-fund  

Source: http://www.times-news.com/local/x1724065386/Outpouring-of-support-for-young-Oakland-man-battling-brain-cancer

A Former Teacher with Brain Cancer Talks Priorities

After A Cancer Diagnosis, Lessons In Priorities

Teaching high school English came naturally to David Menasche but a terminal brain cancer diagnosis forced him to leave the classroom. So he visited some of his former students to see what impact he’s had on them. He writes about the experience in his forthcoming book, The Priority List

TRANSCRIPT

CELESTE HEADLEE, HOST:

This is TELL ME MORE from NPR News. I’m Celeste Headlee. Michel Martin is away. Christmas is here and later in the program, we have a special gift for you. Some of our favorite conversations of the year from translating hip-hop lyrics into sign language, to a legendary musician turning personal grief into powerful song. First, though, a teacher who’s inspiring his students less with his lesson plans and more with his life.

David Menasche taught English in a Miami high school for years. But as he approached the final stages of terminal brain cancer, Menasche decided it was time to hit the road. He spent more than a hundred days traveling hundreds of miles by train and car visiting some of his former students. And he wrote about the journey in a upcoming book called, “The Priority List: A Teacher’s Final Quest to Discover Life’s Greatest Lessons.” And he joins me now. David, welcome to the program.

DAVID MENASCHE: Thank you, Celeste.

HEADLEE: It wasn’t after you got diagnosed that you decided to go on this trip. What’s shocked me a bit was that it was after you’d actually lost a large…

MENASCHE: Exactly.

HEADLEE: …Portion of your vision when it would be the hardest – the most difficult, it seems to be, to go traveling. Why then?

MENASCHE: Well, it wasn’t the diagnosis of brain cancer that got me motivated to go on the trip. It was actually this past July 10, 2012, I suffered a stroke that took away the left side of my body and half of my vision. And at that point, I realized I couldn’t teach anymore, as I couldn’t drive. I couldn’t even get to work, much less watch a over a class of 30 students. So bored, frustrated and feeling purposeless, I decided to take a trip to go visit my former students. So I put a post on Facebook, and within 48 hours, I had offers in 50 different cities, which led to a trip of over 8,000 miles, 75 different students and different couches, over 101 days, and as you said, a book.

HEADLEE: So did you basically decide to visit each student that invited you on Facebook? Or did you…

MENASCHE: Yes.

HEADLEE: …Pick and choose?

MENASCHE: No, my intention was to go see every single one of them, but unfortunately, because of circumstances – you know, kids get sick, people get pulled out of town, things like that happen – I didn’t get to see every single one of the students that I had got an offer from. But I did get the lion’s share of it. Making it all the way to the Pacific Ocean for the first time for me.

HEADLEE: So the question you were asking these students was what kind of impact did I have on your life, right?

MENASCHE: I wanted to know if I made a difference.

HEADLEE: Do you think you were able to get an honest answer from them? I mean, I would imagine that with you sitting right in front of them…

MENASCHE: Absolutely. I had quite a few students tell me, oh, I hated your class. You put me on the spot all of the time. I never felt prepared. But, you know, at the same time, I would ask them, did that in any way help you? And very frequently the answer would be yes.

You know, that being forced to think on their feet, being forced to answer questions ultimately was a benefit. But no, not all of them were, you know, just fawning over me, which was good because that’s what I wanted was an honest answer. But for the most part, I got a range within each one of them where they would say, this part of the class was amazing. This other part of the class, I could’ve done without.

Read more: http://www.npr.org/2013/12/25/256874611/sorting-priorities-after-a-cancer-diagnosis

A Woman’s Final Months Told Through Twitter

The Incredible Story Of A Woman’s Final Months Fighting Brain Cancer As Told Through Her Tweets

Source: http://www.buzzfeed.com/ryanhatesthis/the-incredible-story-of-a-womans-final-months-fighting-brain

Viv Raises Money for Brain Tumor Charity with a Cookbook

Brave mum Viv copes with battling a brain tumour by signing up celebrities and their recipes for her fundraising cook book

VIV MCBETH, of Prestwick was 32 when doctor’s discovered she had a brain tumour after she suffered blinding headaches which would wake her up during the night.

Viv McBeth is has raised £8000 for Brain Tumour UK from her cookbook, Viv's Kitchen.
Viv McBeth is has raised £8000 for Brain Tumour UK from her cookbook, Viv’s Kitchen.
WHEN Viv McBeth beat a deadly brain tumour, she wanted to help the doctors who saved her life.

So she signed up celebrities for a cookbook to raise cash for research into the condition through the charity Brain Tumour UK.

Lorraine Kelly, Miranda Hart and Matthew Wright are among those who supplied favourite dishes for the book, called Viv’s Kitchen, which so far has raised £8000.

Viv, now 40, found her world was turned upside down when she was diagnosed with an aggressive brain tumour, aged 32.

Scared she wouldn’t live to see her son Euan, then three, start school, she found comfort in her love of cooking.

Viv, a former financial adviser, now works full time for the Brain Tumour UK Charity.

She compiled the cookbook after meeting telly queen Lorraine at a charity awards ceremony and then wrote to a host of other household names asking for their help.

The mum-of-one, from ­Prestwick, Ayrshire, was delighted when Lorraine replied with a recipe for her mum Anne’s signature homemade chicken soup.

Contributions from comedian Miranda, TV presenter Matthew, former Scotland goalie Alan Rough and Rab C Nesbitt star Barbara Rafferty followed.

Viv is now hoping to attract more famous names for a second edition.

She said: “Home cooking was one of the things that kept me going when I was down. Making healthy meals made me feel good and I wanted to share my love of food with others.

“I couldn’t believe it when Lorraine Kelly sent me a recipe for her mum’s homemade chicken soup, so I decided to email more celebrities. Soon, Miranda Hart had sent me a recipe for a trifle and Matthew Wright another for a lovely chicken dish cooked with spinach.

“The teachers at my son’s school tell me how much they’ve enjoyed making the recipes.”

Viv first felt ill while making a banoffee pie in April 2005.

Days of blinding headaches followed and she and husband Paul, 44, began to worry when the pain became so bad she couldn’t sleep.

But they could never have prepared themselves for the devastating news that followed.

Viv said: “I thought I had a bug but I was waking Paul up at 3am asking him to massage my temples because the pain was so bad.

“Luckily, my GP took me ­seriously and they gave me a CT scan. Ten days later, I was told it was a cancerous brain tumour and I’d need ­radiotherapy.

“I was devastated – it was like being punched in the stomach. I was a young mum and I never thought anything like it would happen to me.

“I just felt so alone. I’d never heard of anyone who had brain cancer at 32 and I was terrified I would never see my son grow up.”

Viv had 33 sessions of ­radiotherapy and was given a life expectancy of five years.

But she has enjoyed good health since her treatment and has founded a support group for brain tumour sufferers in her area.

She added: “I wouldn’t say I’d had the all-clear but I’ve had good health for the last few years and feel blessed to have reached my 40th birthday.

“My tumour was only detected as it had a pocket of fluid around it that was causing the headaches.

“It could have been a different story and it’s because I’m one of the lucky ones I’ve done this.

“I had a good job but my illness made me rethink things and I realised spending time with my family was more important than going on two holidays a year.

“I had to stay positive for Euan but I was determined that cancer wouldn’t ruin my life.

“The cookbook was a lot of work but handing over a big cheque to Brain Tumour UK made it ­worthwhile.

“Research into brain tumours is underfunded, so it’s important to raise awareness of the ­condition. I hope people remember that every time they open the book.”

http://www.dailyrecord.co.uk/news/real-life/brave-mum-viv-copes-battling-2155728

Inspiration Spotlight: Liz Salmi

Operation life

Liz Salmi is just a gal living in Sacramento, who likes to hang out with her husband and loves her job in communications. After she was diagnosed with brain cancer five years ago, however, Salmi began using her blog, The Liz Army (www.thelizarmy.com), to keep loved ones in the loop on her cancer status. Now, Salmi reaches thousands with the site, using posts to advocate for the National Brain Tumor Society. Salmi sat down with SN&R to talk about blogging, her advocacy work, living with brain cancer and, really, just living.

When were you diagnosed with brain cancer?Liz Salmi

July 2008. I had just turned 29. My first symptom was a really big seizure. So, that’s how I found out, from a seizure.

So, where are you now?

I’m done with treatment. Where I’m at is there’s still cancerous tissue in there. I’ve had two surgeries to try to get rid of as much of it as possible right away, and then I was put on an oral chemotherapy pill. I have been off that pill for two years, and I get scans … every four months to watch the brain. It’s still there, it’s just kind of frozen, deer-in-the-headlights style. [When the] tumor is still there, as long as it doesn’t change, you’re good.

When did you start using your blog specifically for cancer updates?

Well, when you have a crazy disease, everyone wants to know what’s going on, and I let everyone know I had a brain tumor, and I was going to have brain surgery. I got my cellphone, which they shouldn’t have given me, and I created a text message, like, “I have a brain tumor. I’m going to have brain surgery in three days.” I copied everyone in my phone, and I sent it. I was out of it, so my boyfriend at the time started emailing everyone updates, and I thought, “You know, rather than emailing everyone updates, I should just open up the blog and let them follow along that way.”

What has the response been?

I’m getting about 12,000 to 13,000 unique visitors every year. It’s not just people with brain cancer. It’s their loved [ones]. It seems like your friend gets diagnosed, and you want to talk to them every day, but you know they’re busy, so you’re trying to find out what’s this like, and so you read this stuff, and [they realize], “Oh, so that’s what they’re going through.” It’s not exactly the same, but then, people feel like they can understand what their friend is going through.

How has social media helped you in your recovery in living with your disease?

The blog is a conduit for me to find other people like me. I am able to develop an online network of people who know what it’s like. We don’t all have the same type of tumor, we don’t all have the same symptoms, we might not all have the same treatment, but we all experience the same fear or guilt. So, there’s no way I can walk out on the street and meet that person, but through social media and this online world, I am able to make those connections.

What is the worst thing anyone has said to you about your diagnosis?

I was on the phone with my sister … about a month-and-a-half after the diagnosis, and she was just like, “I don’t know how to react. I’m really scared. It seems like everyone’s getting cancer. First it was you, now my dog has cancer.” I was like, “Can you really compare the two?” I don’t think she realized, but I was just like, wow.

Best thing anyone’s said?

Having a blog and writing about all my experiences, I get lots of feedback through the comments section, and then there’s Twitter and there’s Facebook. Even just the first time hearing that I wrote something and it’s exactly how someone else feels—one, I don’t feel alone, and two, [it feels] cool that someone else felt like I said what they feel.

You’re also an advocate for the National Brain Tumor Society.

I am an unpaid volunteer, but I am the lead advocate for the state of California—which is a huge state. I’m like, “Can there be more of us?” There’s just a couple of national brain-tumor organizations. [The National Brain Tumor Society] is the biggest one, and they deal mainly with advocacy.

Greatest ambition?

Right now, I’m living, and I think a lot about [that] I have this disease, and I’m going to accomplish this. I would love to get out of that one day and live like a normal person and not think about accomplishments and checking things off related to my disease. I don’t know if I’ll be able to get there, but that would be cool.

http://www.newsreview.com/sacramento/operation-life/content?oid=10929156

Community Support

Community rallies behind 7-year-old leaving to undergo brain tumor treatment

Supporters sporting pink T-shirts and balloons line Main Street last week to cheer on 7-year-old Ella Hembrook. The Stoughton girl is battling a rare brain tumor, and a family friend organized a surprise sendoff for the family as it prepared to go to Boston for special treatment at Massachusetts General Hospital. [Photos by Derek Spellman]
Ella Hembrook’s brain tumor was discovered last year after a routine eye exam.
By:
Derek Spellman

Families took to Main Street last week in a show of support for a young Stoughton girl battling a rare brain tumor.

Small crowds wearing pink shirts and waving balloons turned out Wednesday, June 19, to bid farewell to 7-year-old Ella Hembrook, who was bound for Boston to undergo eight weeks of special treatment for a tumor discovered last year. The surprise send-off, in which Hembrook and her family traveled down Main Street amid cheering crowds, was organized by family friend Katie Bridgwater.

“We’ve been planning it for weeks,” Bridgwater said. “We wanted to do it before they left (for Boston).”

Kevin Hembrook, Ella’s father, said he took both his girls to the eye doctor last year after he switched health insurances. That optometrist noticed swelling in Ella’s optic nerve and referred them to an ophthalmologist, who in turn referred the family to American Family Children’s Hospital, where an MRI found the tumor.

Ella has already had two surgeries – the first in February 2012, the second six months later. Kevin Hembrook said three months ago another MRI showed the tumor was growing again.

The family has headed to Boston’s Massachusetts General Hospital for a special kind of proton beam radiation treatment there.

“Nothing is 100 percent, but I am hopeful,” Kevin Hembrook said.

Friends, meanwhile, have been rallying to the family’s support.

Three families organized garage sales earlier this month. Teachers and parents from the Stoughton Area School District responded with T-shirts, donations, ribbons and cards of support. St. Ann’s Church also helped. Verona-based Leisure Threads donated T-shirts for the sendoff. Donations have been flowing in from all over, and an account to help the family has been established at Blackhawk Credit Union.

Bridgwater said she has known the Hembrook family for three years through the Stoughton Center for Performing Arts, where Ella dances and Bridgwater’s daughter dances. When she heard of the Hembrook family’s plight, she took to Facebook to start a group to help them.

“It just kind of blossomed from there,” she said.

She wanted to organize a send-off and fundraiser, she said, to support the family because of how long they will be in Boston. Both before and after the sendoff, supporters sold T-shirts and bracelets to benefit the family and also took donations.

All the support has been welcomed, Kevin Hembrook said.

“We’ve had just awesome support from the community,” he said. “It does make things just a little easier.”

How to help

Donate a gift card, cash or cards of prayers to any of the following locations:
• Katie Bridgwater, 1309 Moline St., Stoughton
• Stoughton Center for the Performing Arts, 515 E. Main St.
• Donate through PayPal
• Drop off or send checks made out to the “Ella Bella Cinderella Fund” at Blackhawk Community Credit Union at 1525 U.S. Highway 51-138
• Use donation boxes at Stoughton Tumblers, the Performing Arts Center and Next Generation
• Follow Ella Hembrook’s progress via the family website at ellahembrook.webs.com.
• For more information, contact Katie Bridgwater at 719-9160 or email kbridg
water9@yahoo.com.

For more information: http://www.connectstoughton.com/articles/2013/06/30/community-rallies-behind-7-year-old-leaving-undergo-brain-tumor-treatment

A Little Support Can Go a Long Way

Who needs hair when you have the world’s most amazing friends?

Fifteen fourth grade boys from El Camino Creek Elementary School in Carlsbad, Calif., volunteered to shave their heads to support Travis Selinka, who was recently treated for brain cancer.

Selinka, 10, had returned to school with apprehensions after 7 weeks of radiation therapy, Encinitas Patch reported.

And so, his friends planned a trip to the All American Barber Shop to have their own locks shorn off.

(Story Continues Below) 
travis selinka

“I was astonished that they did this for me,” Selinka told Patch. “It was amazing just knowing that I have all my friends there.”

Now, Selinka no longer wears a hat to school, FOX 5 San Diego reported. He and his mother told the station that they were thankful for his friends’ actions.

“It was overwhelming and every time I think about it, it brings tears to my eyes,” Lynne Selinka, Travis’ mother, said.

For more information: http://www.huffingtonpost.com/2013/06/13/travis-selinka-friends-shave-heads_n_3434720.html?ncid=edlinkusaolp00000003

Betty Hayden is Back to Pruning Roses After Fighting Rare Brain Cancer

After Brain Cancer Battle, Orange County, CA, Resident Picks Up Active Life Where She Left Off

Released: 5/31/2013 8:00 PM EDT
Source Newsroom: Cedars-Sinai Medical Center

Newswise — LOS ANGELES (June 3, 2013) – Westminster resident Betty Hayden loves to work in her yard and looks forward to traveling on weekends to dog shows with her daughter. But the retired school employee’s active lifestyle came to a halt last June with the sudden appearance of aggressive brain tumors.

After the diagnosis, Hayden’s daughter, Tammy Porter, expected doctors to quickly create a coordinated treatment plan. When they didn’t, she contacted brain cancer specialists at Cedars-Sinai Medical Center, where Hayden was evaluated and hospitalized within days. A year later, the cancer is in remission and Hayden is back in action, tending to her yard a couple of hours a day.

“In my opinion, they saved my mom’s life because they worked so fast to get us in,” said Porter, who first noticed changes in Hayden’s behavior during a weekend dog show in Ventura.

“She was going to bed really early, which isn’t like her,” Porter said. ”My mom can run circles around everyone else, but she was going to bed at 7 o’clock and sleeping a lot. She just wasn’t 100 percent herself. She was walking a little to the left, and I noticed that when she was talking, she sometimes would throw in a word that was kind of out of left field,” said Porter, who looks out for her mom who lives alone after being widowed about 10 years ago. They made an appointment for Hayden to see her doctor as soon as they got home.

Hayden’s behavior at the brief doctor’s visit was normal and blood tests were negative. But, Porter, convinced something wasn’t right, asked if a brain scan could be done.

“After the CAT scan, I got a call from the doctor, saying, ‘Your mom has two masses in her brain. You need to get to an emergency department ASAP,” Porter said, adding that her mother, 72, has always been fit, healthy and active. A biopsy found that the masses in her brain were cancerous.

“That was just horrible. I got the call and sat down with her and told her. … It’s amazing how something you don’t even know about just all of a sudden changes your life,” Porter said.

Hayden said the doctor seemed indifferent: “I said, ‘Now what do we do?’ And the doctor said, ‘We’re finished. You have to go see another doctor.’”

But Porter, believing her mother needed medical attention sooner rather than later, grew frustrated with the doctors’ apparent lack of interest, urgency and follow-up. As she tried desperately to reach unavailable doctors, she asked a friend to search the Internet for other options. The name of Keith L. Black, MD, chair of the Department of Neurosurgery at Cedars-Sinai, came up, and Porter sent an email to James Villalobos, RN, program development coordinator, in the department.

“It was about 9 o’clock on a Saturday night and I emailed Dr. Black’s office, not expecting, of course, to hear from them until Monday. But that’s when James called back. He called me back that night, at 9 o’clock. I was amazed,” Porter recalled, adding that she was even more impressed when Villalobos arranged coordinated consultations at Cedars-Sinai a few days later.

She and her mother met with neurosurgeon Chirag Patil, MD, director of the Center for Neurosurgical Outcomes Research, and neuro-oncologist Jeremy Rudnick, MD, a brain cancer expert in the Department of Neurology and the Department of Neurosurgery. Because Hayden’s cancer was not amenable to surgery, Rudnick took the lead.

“He looked at her MRIs and started telling us about this disease,” Porter recalled. “He said, ‘I’d like to get you in right now. This is a fast-growing cancer.’ He showed us her MRI pictures. This was the first time we had seen them. Her brain center line was totally out of skew. Her brain had so much swelling because of the tumors it’s amazing she didn’t have more side effects.”

Rudnick said Hayden’s cancer, central nervous system lymphoma, a type of non-Hodgkin lymphoma, is so rare that a general hospital may see a case only once every five years; Cedars-Sinai doctors treat 10 or 20 patients a year. It’s considered a stage 4 lymphoma, one of the most aggressive forms of the disease.

“With this disease, we can see a doubling of tumor in just weeks. Betty was declining quickly but she and her daughter weren’t getting the information or help they needed. The day after we saw her we had her in the hospital getting high-dose IV chemotherapy,” Rudnick said, adding that Cedars-Sinai has several treatment options for the disease, including an aggressive and potentially curative high-dose chemotherapy/stem cell transplant protocol.

Hayden underwent a more standard regimen: a weeklong hospital stay for chemotherapy every other week for four or five months.

“If she had gone much longer without treatment, I don’t know that she would have survived. But she responded beautifully and her disease is in remission. She had a response in all the tumors and right now her MRIs are completely clean and clear. She’s doing remarkably well, pruning the rose bushes and going to dog shows,” Rudnick said. “For me, that’s incredibly rewarding.”

http://www.newswise.com/articles/after-brain-cancer-battle-orange-county-ca-resident-picks-up-active-life-where-she-left-off