Monthly Archives: May 2012

LA Youth Magazine: I’ll Never Forget Shiri

I met her in study hall at the beginning of freshman year. Everyone was sitting with their friends, and they barely noticed when this tiny, skinny girl came in, being pushed in a wheelchair with a John Kerry sticker on it. She hopped out of the chair and sat in the desk right next to mine.

“Hi, my name is Fred, what’s your name?” I introduced myself with a smile, wondering what kind of story she had to tell.

“My name is Shiri, nice to meet you Fred.” She had pretty eyes with a mixture of green and gray. Within minutes we had plans to see a movie that Friday.

Before the movie I went to her house. It’s not always fun to meet a girl’s parents because they tend to jump to the wrong conclusion. They think high school boys only want one thing, which isn’t true, in my case. Also, being her first friend at Montclair, I wanted to make a good impression in front of her family. I tried to be extra polite. I felt that if they had a few minutes to meet me they wouldn’t feel that way about me. As it turned out, they were really nice, and even seemed grateful that Shiri had a friend from school.

Gill, who was kind of like Shiri’s friend, babysitter and medical assistant all in one, took us and hung out with us at the movie. I offered to wheel Shiri and Gill was very thankful. I don’t know why I wheeled Shiri, I just enjoyed helping a sweet person like her out. Before the movie, she told me everything about her life.

The reason that she was in a wheelchair was because she was diagnosed with osteosarcoma, which is bone cancer. She had many forms of cancer before this, but nothing as scary as this one. She had had a tumor in her knee, pelvis, and lungs—she had been sick since she was 11. She had been through chemo and been held back a year, because she didn’t really get an education that year because she spent so much time in the hospital. Not only that, but her mother had died of a heart attack not long after her diagnosis.

While she was talking I was speechless. I knew that kids can get cancer, but to have a friend be a cancer patient was totally different. I listened carefully but at the same time I was thinking to myself, How do I react to what she’s telling me? I don’t want to say the wrong thing and make her feel bad. I don’t want to be a nurse and talk to her as if she’s a patient, I want to act casual. But I don’t want to act too casual to the point where she thinks I don’t care! I told her I was really sorry and if she ever needed anything, I would be there. She thanked me.

When I went home I couldn’t stop thinking of the hardships that she had faced—she had spent almost half of her life being sick. I couldn’t imagine having your mother die, or being diagnosed with such a rare disease. I thought about all the things that she would miss because of her illness, like driving, dating, playing sports or even being alone. And what about friends? Even though you can hang out, you have to have a babysitter be with you all the time, just in case. Would she be able to talk about semi-embarrassing things with her friends, if she always had to have someone there? It made me feel really sad, and I admired her so much for her optimism and spunkiness.

The next time I saw her in study hall, she was staring at all the girls around her. I asked her what she was looking at, and it was their long straight hair. She told me how every time she beat cancer, she would start to grow her hair out, but she had to shave her head again when her cancer came back over the summer.

Pretty soon everyone knew her

I started wheeling her between classes, and as the months went by, Shiri became semi-famous on campus. Everybody would say hi, and she always had plans for lunch with different friends. I didn’t meet a person who wasn’t instantly charmed by her.

Seeing how everyone was so friendly and helpful to Shiri made me really love Montclair. Shiri told me that Montclair had been renovated to be wheelchair-accessible for her. Also her classes were pass-fail as opposed to the standard A, B, Cs. She could take naps when she was going through chemo. And she was allowed to wear hats during school, which no students could ever do.

Shiri (left) goofed around at the pool with her friend (and Fred’s sister) Alexandra.
Many people told me I was doing a great thing in being friends with Shiri, and I always told them that it wasn’t community service and even if it was, she should be getting the hours for tolerating my lame jokes.

I’ll never forget the day we spent at Universal Studios later that fall. Of course I’ve been to Universal many times, but with her, it was a new adventure. After we went on the Back to the Future ride, my friend and I started wheeling Shiri full throttle down the exit ramp. We were all laughing and yelling until a security guard appeared out of nowhere and said “Don’t ever do that again or we’ll kick you out of this park!” We said “Oh, OK sorry!” It was a blast being a troublemaker with Shiri.

Then we stood in line for the Revenge of the Mummy ride several times until the employees let us just stay on the ride over and over. We rode it till I wanted to throw up, which was 14 times! As we left the mummy ride, Shiri noticed a big talking remote-controlled dinosaur with a mouthful of teeth. She went right over and for some reason the employee let her operate it. With her high-pitched voice, she started making the dinosaur call out to tourists, “Hey you look tasty, I want you for my lunch.” The tourists stared at the dinosaur uneasily, giving it a wide berth as they passed by. I sat nearby, pretending I didn’t know Shiri, laughing my head off.

Then we spotted a guy dressed as the character Beetlejuice, with poofy green-hair, a corpse-white face, rotting teeth and a pin-striped suit. Shiri’s caretaker Gil was buying us some ice cream, so we told Beatlejuice to kiss her. He went over to her, saying “Gil, baby!” but she was so surprised and grossed out that she wouldn’t kiss him. Then Beatlejuice took us on the Shrek 4-D ride. Seeing that freaky guy wheel Shiri along was hilarious. Since we were with him, we got to cut the line. After the ride was over, Beetlejuice was waiting for us to take Shiri on her way, and gave her his e-mail if she ever wanted to talk. The day was one of my favorite memories of Shiri.

Later that fall, when Shiri was hospitalized for chemotherapy, I visited her frequently. She spent most of December in the hospital. On Christmas night, my family stayed up with her, building gingerbread houses out of graham crackers and pink frosting, exchanging presents, watching TV and taking photos. I’d never had a Christmas like that, in a hospital. As the night wore on, the lights turned off in the other rooms and it seemed as though the only other people that were awake were the nurses. It felt like we were having a secret party. Later, when Shiri fell asleep I gave her a little kiss on the cheek. It was the perfect Christmas eve.

She soon came out of the hospital, but she wasn’t well. The tumor in her knee was shrunken, but the tumor in her lungs and pelvis were growing. Her family didn’t tell her about the tumors that were growing because they didn’t want her to worry, but I knew. She didn’t have the strength to make big plans, so we’d go out for frozen yogurt (she liked peanut butter flavor), go out to dinner or we’d just hang out at each others’ houses.

The most special birthday party

Since she wasn’t at school much, I decided to throw her a surprise party for her 16th birthday. I made invitations and gave them to all of her friends from school. Everyone did a great job at keeping it a surprise until my dad somehow gave it away. I still tease him about it to this day.

When she walked through the doors of California Pizza Kitchen holding her walker, there were 17 of us waiting for her. We started clapping. Everyone in the whole restaurant turned to look and started clapping too. She said, “Stop it, you guys are going to make me cry!” She looked so shy and happy, so pretty in her white suit, bandanna and gypsy makeup, I felt really happy for her too.

I later found out that she had been planning her outfit for a week. It was a big deal for all of us, because I knew she didn’t get to go out much, and in the back on my mind, I thought this could be her last birthday.

During the party, everyone tried to get me to kiss Shiri. People would say, “Ooh, look at those lovebirds!” We just brushed it off and Shiri said “I’m not kissing anyone!” We spent the whole night goofing off, pretending to fight with our table knives and having a blast. Several classmates swung by and dropped off flowers for her.

Later that spring, Shiri and her friends got into the habit of hang out at her house every Wednesday to watch America’s Next Top Model. I used to go all the time, but I started getting busy with schoolwork.

One Wednesday, Shiri called me saying, “Why aren’t you here?” I explained that I had asked my sister to let her know that I couldn’t go, but she must have forgotten to pass on the message. Shiri got upset and said the F word and hung up on me. I was really upset! I’m not going to let a friend swear at me and hang up on me. It shocked me that she would treat me that way, given that we were like best friends.

Her friends at school were like, “Just forgive her. Don’t do that to Shiri.”

I said, “She’s my friend but I didn’t do anything to deserve this.”

“Whatever, she has cancer.”

I felt kind of bad, but I still didn’t like the way she treated me.

I called her later and asked her what was going on. Why had she treated me so rudely? She apologized and said she just wanted me to be there. I told her why I couldn’t be there, and I was still her friend, but I told her she can’t say that kind of stuff to me. Later Shiri’s stepmom told me that she thought it was good I did that. She said everyone lets her get away with everything.

Later that spring, Shiri had some problems. She started to have seizures and her parents rushed her to the City of Hope hospital, near Pasadena, which specializes in cancer treatment. This is when they found out that there were 12 tumors in her lungs. When my parents told me about it, I was glad they caught it, but it was scary to know that there so many.

We started to visit her once, twice or three times a week. Her small room was very clean, but it was sad to be there, and see her hooked up to an IV tube. We would read a magazine or watch TV or just talk as if we were hanging out at the mall. She could still sit up, though she always seemed tired. It was harder to have hope, but I was always thinking that the new medicine might help.

She posed with her fallen “gingerbread house” made from graham crackers while she was hospitalized at Christmastime.Photo by Alexandra Scarf, 16, Montclair Prep
On the 4th of July, my mom, dad, Shiri’s sister, dad, and stepmom had a party in Shiri’s hospital room. We had the most delicious food that Shiri’s stepmom made, from salad to chips to burritos, while we were watching this strange TV show called Elimidate, where we made fun of the trampy girls and greasy guys getting together. Her stepmom and I found some bandage tape and wrapped ourselves, pretending to be hospital mummies.

Soon after that party, Shiri seemed to get worse. It was rare for her to be awake. When she was awake, she was drowsy and had trouble sitting up. Sometimes she was delusional, and didn’t know who everyone was. The most conversation she could manage was “Hi.”

One time, Shiri was laying there with her eyes closed and asked me “Fred, when are we going on our date?” “When you get out of the hospital we will go,” I said. I wasn’t too surprised because I had a feeling that she had a crush on me. Then Shiri asked, “What are we going to do?” “How about a movie?” I said. Shiri said, “That’s it? You cheapskate!” I was laughing and said “Fine, dinner and a movie.”

As her condition became more critical, she was given more drugs which blurred her vision. One time, my family, Shiri’s brother and sister were gathered around her as she slept. When she woke up, she seemed disoriented and asked if she could go to Disneyland. Her sister said “Soon we will go when you get better.” Shiri started crying and begging to go to Disneyland. Her sister started crying and trying to explain that Shiri had to get better first. Trying to distract her she said, “Look, Fred‘s here!”

“Fred?” she asked.

“Hey Shiri,” I called out. Shiri turned her head in my direction, not sure where I was. Heartbreaking isn’t even a word to describe how painful it was to see my best friend like this.

Soon after, the hospital arranged to have some Disney characters come and visit her. Snow White, Sleeping Beauty and Cinderella came and gave Shiri free merchandise. Shiri was not too impressed. She thought Snow White was too sweaty and Cinderella was kind of grimy. It made me laugh to see that my friend still had her quirky sense of humor.

One night in August, after my sister got back from the hospital, I asked her how Shiri was. She said, “She was in her prettiest, pinkest dress, and she told me to tell you that she is ready for that kiss.” My parents told me that the doctor had said that Shiri probably only had 48 hours left.

The next morning, I got up early to take the bus to the hospital, but as I was waiting, I got a call from my dad, saying that Shiri had passed away during the night. I didn’t believe it. It didn’t sink in. I walked back home and when I got home I couldn’t stop crying on the living room couch. The thing that was so devastating was that I never got to say goodbye to her.

The word spread quickly. When I looked at MySpace, all kinds of random people had posted bulletins about her death on their pages. People called me to find out if it was true. Even as I was confirming that she had died, I couldn’t believe it myself. Even after her dad asked me to speak at her funeral, and I started writing down my thoughts, I still couldn’t believe that she was gone. At first, I wondered what to say. I didn’t want to give a big emotional speech. I wanted to show everyone what it was like to be Shiri’s friend, and what a big goof Shiri was, and I decided to wear white rather than black to show that this shouldn’t be seen morbidly as a loss, but as a celebration of her life.

I didn’t want anyone to see me cry

Within a week, the funeral was held at Forest Lawn in Glendale. I walked down a path to where a group of chairs were set up on the grass. I stopped to look at the pictures of Shiri–there was one of her carrying the Olympic torch in 2002, and another picture she painted of her dog, JoJo. As I listened to the slow, peaceful sounds of the harp player nearby, it suddenly hit me that Shiri wasn’t here anymore. I felt really bad, like I was dead, too, in a way. I was so shattered, I went to the bathroom and cried. But I didn’t want anyone to see me and turn it into the saddest day ever, so I pulled myself together and went to talk with some friends who had arrived.

Many of Shiri’s friends from Montclair came, even the principal. After we all were seated, the rabbi came up to the podium and said “Our first speaker will be Fred Scarf.” I felt so honored to be the first speaker. I hadn’t expected to speak before her father, sister, brother or stepmother. When I approached the podium, I looked out at the sad people dressed in black. Some were actually sobbing. When I tried to talk, I couldn’t get any words out, but I took a deep breath, looked down at my paper and read my speech. I talked about how Shiri and I were so dorky and funny, and all the things we had done, like the time we went way too fast at Universal Studios, the times when we saw scary movies or ate unbelievably spicy pasta. Pretty soon people were laughing. Later at the reception, older people would come up to me and say “OK, you don’t know me but you are so great!” and they would give me a big kiss.

The thing I will never forget from the funeral was her sister’s speech. She spoke about how Shiri always wanted long straight hair, but every time she’d start growing it out, she’d have another round of chemotherapy and have to shave it all off. Her sister said that she could picture Shiri in heaven with her long beautiful hair being brushed by her mother. I thought it was the perfect thing to say, even though it made everyone cry.

Even now, a year later, it is hard to accept that Shiri is gone, that there will no more dinners, beach visits or gingerbread houses with her. To many people, her death is a thing of the past, but I miss her every day.

In honor of Shiri, I have started a nonprofit foundation which is dedicated to raise money and awareness to support research for the cancer that killed her, osteosarcoma, which doesn’t get as much attention as other forms of cancer. The goal of The Shiri Foundation is to raise money to prolong the lives of people with osteosarcoma. Ultimately, perhaps a cure for the disease will be discovered. Words could never describe the pain that Shiri and her loved ones suffered. To prevent others from suffering that much pain, would be a dream come true for me. I love you, Shiri.

Fred transferred to Birmingham High this year.

KABC: Pay It Forward: No Worries Now

SHERMAN OAKS, LOS ANGELES (KABC) — Fred Scarf founded No Worries Now, a non-profit organization that organizes proms for teens with cancer and other life-threatening illnesses who may not live long enough to attend their own proms.

At No Worries Now — based out of Scarf’s parent’s home in Sherman Oaks — no one accepts a salary; everyone is a volunteer. But the group was quickly running out of money and running out of time before their big night. So when Scarf heard about ABC7’s Pay It Forward campaign, he submitted a video.

Scarf always planned on taking his best friend, Shiri, as to prom.

“The way we talked about prom was a way to kind of take us out of the moment and really dream. It meant a lot to me and it really meant a lot to her,” he said.

But Shiri died of cancer before her prom night. Instead of mourning her death, Scarf decided to celebrate her life by founding No Worries Now and holding an annual prom night for hundreds of kids.

“It’s probably the best night of the year for me,” said Scarf.

Kids invited include Lucene Bechirian, who lost her eyesight at 12 years old.

“One day I just woke up and I just couldn’t see. I took an MRI and they told me that I had cancer in my optic nerve,” Bechirian recalled. “From then it was like the first brain surgery, the second, the third, the fourth, the fifth — eye surgery, chemotherapy, radiation — it was almost like my whole world changed.”

Bechirian says thanks to Scarf and his dancing on prom night she felt a normal kid.

“It was so in the moment, like you were living that moment, you weren’t thinking about doctor appointments or treatment or any problems you had. It was just fun. And I don’t think I stopped smiling the whole night,” she said.

Doctors at UCLA believe there is a medical benefit to going to the prom.

“We do know kids and people in general who are happy and hopeful actually do better,” said Dr. Ilanit Brook, a pediatrician at Mattel Children’s Hospital UCLA.

Still, fundraising this year has been especially slow. Scarf took this year off from Cornell University to work on the foundation, but he’s spent almost all his time trying to sell T-shirts to raise money instead of walking the halls of hospitals to invite patients.

Scarf said the $7,000 could be used to pay for about 300 kids to go to prom.

“This is really going to make an immediate difference in a lot of people’s lives,” said Scarf.

“It’s so nice for us to be able to give good news to people and really bring smiles to their faces, it’s a bright spot in their hospital stay,” said Gina Kornfeind, social worker at the UCLA Children’s Comfort Care Program.

Prom night is scheduled for June 29 at Madame Tussauds in Hollywood. Scarf is also in the process of creating what he calls a prom in a box – a kit so kids all over the country can start similar proms.

If you would like to contact No Worries Now or donate to the organization, go to www.noworriesnow.org or call (818) 741-1187.

Calabasas Courier: No Worries Now

With elaborate decorations, delicious food and bright lights, teenagers dance to the music in a state of untroubled bliss. For one spectacular night, they can escape their illnesses and worries to have an experience that they will always remember.

Fred Scarf founded a non-profit organization called No Worries Now that coordinates proms for teens with life-threatening illnesses, who may not have the opportunity to attend their own high school proms. Scarf was inspired to create the organization after the loss of his high school friend, Shiri Gumbiner, to bone cancer at the age of 16. He spent his sophomore year of high school starting NWN. Since 2007, Scarf and the team at NWN have put forth a great amount of effort and endless hours into organizing proms annually.

“[Prom] is a milestone that is symbolic of surviving high school,” said Scarf. “The most important [aspect] is [getting the attendees] to feel like teens, not [just] patients or brave souls. They get to feel their age, which is something a lot of them do not get [the] chance to feel.”

Over the past six years, NWN has organized proms that have brought happiness to hundreds of teens. Proms have been held in San Francisco,Washington D.C. and Detroit, and a prom will tentatively be held inDublin,Ireland. This July, NWN is hosting a prom at Sony Studios inCulver City, where distinguished chef Wolfgang Puck will cater the event. Professional hairstylists and makeup artists will prepare the girls for the dance.

Last June, sophomore Kevin Cordasco attended a NWN prom. Cordasco began his battle with cancer at the age of 10 when he was diagnosed with stage four Neuroblastoma, a cancer stemming from the nerve cells that harm the spinal cord and bone marrow. His attendance at prom continues to motiviate him in his battle against cancer.

“NWN meant so much to me at that point because I had just gotten out of a six month slump of being in and out of the hospital,” said Cordasco. “It was truly amazing, and I am so appreciative to have been able to attend such an extraordinary affair. Moments like that [help] me fight cancer even harder.”
Associated Student Body president senior Josh Levin has recently introduced NWN and Fred Scarf to CHS. ASB’s community commissioners have been working with the organization to help fundraise for the upcoming prom at Sony Studios.

“NWN has taught me to enjoy each day of life,” said Levin. “Although [prom] is a monumental night, I do not think [everyone] truly takes the time to appreciate it.”

The organization has progressed rapidly over the past year with a growing number of attendees and sponsors. NWN has given teens the chance to be carefree for one night, and it will continue to offer more teens the same gift for years to come. •

Fred Scarf: A Prom Night to Remember

The founder of the nonprofit foundation No Worries Now, Fred Scarf, talks to Everyday Health about the importance of friends and family and shares his plans for the future.

When he was just 15, in 2006, Fred Scarf founded the No Worries Now foundation. His best friend, Shiri Gubminer, had passed away from a rare form of bone cancer when they were freshmen, and he wanted to create something that would not only honor her, but also fulfill the dream they always had of attending their prom together.

No Worries Now organizes special proms for teens between 13 and 19 who, like Shiri, have life-threatening illnesses like cancer. Many of these teens have to worry about the side effects of treatment on a day to day basis, so the No Worries prom gives them a chance to act their age and take a break from the stresses of their illnesses. They also get free hair, nail, and make-up services, as well as wigs if they want them – so they can go to the prom in style — and an opportunity to connect with others facing similar health challenges. Donations from sponsors around the country mean the No Worries prom is free to all the attendees and their guests.

Currently a student at the University of California, Berkeley, Scarf still organizes proms in cities around the country. Nominated as a CNN Hero in 2010, he has blogged for The Wall Street Journal classroom edition, and he has been published in The Los Angeles Times. His hope is that No Worries proms will empower the teens who go to them and remind them of the unwavering support they have during their journey through illness.

My future health projects: No Worries Now is working on launching Prom in a Box. This will give anyone the tools to organize their own prom in their own city. The No Worries Now team will hold your hand along the way.

My health heroes: My family and friends. They are always there for me.

My practice for what I preach: Use your creativity and imagination to find real solutions.

My best health tip: Do what you love.

Favorite part of a prom celebration: The process of creating a prom. I love seeing all the elements come together and thinking about how I can improve the celebration year after year.

Now Prom

Welcome!

Welcome to our new blog!

No Worries Now is grateful to our wonderful sponsors who make it possible for us to throw proms for teens with life-threatening illnesses while continuing as a volunteer-only non-profit. To become a sponsor, donate below or e-mail us at sponsors@noworriesnow.org. Sponsorship Levels Prom Committee ($500.00)Prom Court ($1,000.00)Prom Queen ($5,000.00)Presenting Sponsor ($10,000.00)

Thank you for your interest in volunteering at a No Worries Now Prom for teens with life-threatening illnesses! This form is specifically for those who want to volunteer in-person at a NWN Prom event. There are plenty of opportunities to volunteer with No Worries Now throughout the year–not just on prom night! See how else […]