Determined Teen Loses Ovarian Cancer Battle, But Her Courage Inspires An Entire Community

On December 24, 2010, fifteen year old Meghan Redenbach lost her ovarian cancer battle. Although her physical presence is no longer, Meghan’s spirit will forever inspire her hometown community, as well as those who have read about and followed her courageous journey since 2008.

On December 24, 2010, fifteen year old Meghan Redenbach lost her ovarian cancer battle.  Libby’s H*O*P*E*™ covered Meghan’s inspirational story on February 26, 2009 and March 5, 2009. When Meghan was thirteen years old, she was diagnosed with a rare form of ovarian cancer known as “fibrosarcoma.” This form of ovarian cancer is so rare that there are only 30 documented cases in the U.S. Meghan was only the second child to be diagnosed with fibrosarcoma.

Meghan was a gifted and avid volleyball player in middle school and during her freshman year in high school.  “She just has incredible courage and determination and the ability to fight through things,” says Bill Holahan, Meghan’s high school volleyball coach. “Anyone who has come into contact with her has fallen in love with her and her courage.”

Meghan Redenbach was a gifted and avid volleyball player. Bill Holahan, Meghan's high school volleyball coach, said: "Anyone who has come into contact with her has fallen in love with her and her courage."

Last year, and after a difficult selection process, Meghan was chosen by Roswell Park Cancer Institute as one of three cancer patients whose stories were told as part of the Institute’s New Era New Hope campaign.  As part of the New Era New Hope campaign, each selected patient was requested to design a customized baseball cap that represented the spirit of his or her cancer journey.  The front of Meghan’s cap emphasized the word “Survivor,” along with a teal ovarian cancer ribbon. In full defiance of her cancer, Meghan placed the words “Man Up” on the back of her cap.

As part of her story for the New Era New Hope campaign, Meghan wrote:

… I will admit that at times I feel like I don’t have anyone, and just want to give up. In reality, I have so many people behind me that bring out the strength I have. I guess the saying “You never know how strong you are until strength is your only option,” is really true. People have said it is amazing how I can do all this and stay so positive. I strongly believe that I am doing what any other person would be doing if they were in my position.

Being diagnosed has opened my eyes to everything in life. I have never really appreciated my friends and family as much as I do now. If it weren’t for them, I am not sure I would have gotten as far as I have. Everyday I tell myself, “Just another day. No matter what, I will make it to tomorrow. Even if I fight all day. I’ll make it.”

I have always wanted to inspire people, and help people get through things they never imagined they could get through. And to tell you the truth, I am still trying to figure out how. One day it will all come together and all my dreams will come true. I hope this happens for everybody. One of my dreams is to speak for those who are, unfortunately, not able to tell their story. Those who have lost their fight. I plan on winning my fight in honor for those who didn’t get a chance to say, “I’m a survivor. …

Meghan’s words above require no additional explanation and reveal the character of a remarkable teenager, who was wise well beyond her fifteen years of life.  Although her physical presence is no longer, Meghan’s spirit will forever inspire her hometown community, as well as those who have read about and followed her courageous journey since 2008.

In tribute, we provide below a five minute video news story about Meghan, which was created in March 2009 by WGRZ’s Matt Pearl.  In addition, we provide a second news story video that reported today on Meghan’s life and extraordinary character, as described by those who gathered to celebrate her life.

We would like Meghan’s family and friends to know that our thoughts and prayers are with them during this extremely difficult time.

Meghan Redenbach – WGRZ News Story – March 5, 2009

Vodpod videos no longer available.

Meghan Redenbach – WIVB News Story – December 28, 2010

Sources:

“Smile, Open Your Eyes, Love and Go On.”

Today marks the 2nd anniversary of Libby’s death from ovarian cancer at the age of 26. Although the family healing process continues, we celebrate Libby’s life formally on this day to honor her memory, and remind ourselves that life is precious and should not be taken for granted.

Today marks the 2nd anniversary of Libby’s death from ovarian cancer at the age of 26. Although the family healing process continues, we celebrate Libby’s life formally on this day to honor her memory, and remind ourselves that life is precious and should not be taken for granted.  This day also reminds us that there is a considerable amount of work yet to be done in raising ovarian cancer awareness and finding a reliable screening test, and ultimately a cure, for this unforgiving disease.

As reported by the American Cancer Society earlier this month, the estimated number of newly diagnosed ovarian cancer cases and related deaths in the U.S. during 2010 will be 21,880 and 13,850, respectively.  Simply stated, a U.S. woman will die every 38 minutes from ovarian cancer in 2010. Cancer Research U.K. also reported this month that the 10-year ovarian cancer survival rate nearly doubled since the 1970s. Unfortunately, this much heralded statistical “doubling” represents an increase of the long-term ovarian cancer survival rate from 18% to only 35%. Ovarian cancer still remains the most lethal gynecologic cancer in women. I know that if Libby were alive today, she would say, “we must do better.”

Although the vast majority of visitors to this website never knew Libby, it is because of her that Libby’s H*O*P*E*™ was created and shared with the general public. What began as a family website used to exchange ovarian cancer and cancer-related information within the family during Libby’s illness, has rapidly become a global information resource for ovarian cancer survivors and their families after her death. It is my greatest hope that Libby would be proud of the following accomplishments achieved over the past two years, which are dedicated to her memory:

  • Created Libby’s H*O*P*E*™ mission statement to be carried out by a future nonprofit, tax-exempt organization.
  • Generated approximately 145,000 website visitors, from 60 countries around the world.
  • Generated 5% to 10% of daily website visitors from major U.S. and international cancer centers and elite academic institutions actively engaged in cancer research.
  • Established a website library containing over 500 videos relating to ovarian cancer and cancer-related topics.
  • Responded to approximately 700 ovarian cancer survivor (and family) general informational inquiries, which were answered within 96 hours of website posting or email receipt.
  • Created Vox Populi website article features which provide the general public with a better understanding of how ovarian cancer impacts the daily life of a woman diagnosed with the disease and her family. These stories have been well-received by our readers as a source of inspiration and hope.
  • Highlighted in the Eyes on Advocacy section of the 2010 University of Washington Tumor Vaccine Group (UWTVG) quarterly (Winter) newsletter entitled, TVG Focus. The UWTVG is headed by Mary L. (Nora) Disis, M.D., a Professor of Medicine and Adjunct Professor of Pathology and Obstetrics & Gynecology at the University of Washington, and a Member of the Fred Hutchinson Cancer Research Center. Dr. Disis is a world-renowned cancer immunologist.
  • Established a new working relationship with Women’s Oncology Research & Dialogue (WORD), a non-profit, tax-exempt organization dedicated to raising gynecological cancer awareness.  To promote this new relationship, WORD recently shot a video of Paul Cacciatore, the Libby’s H*O*P*E* founder.  In the video, Paul addresses the genesis of the website, the Libby’s H*O*P*E* mission statement, and why it is important for all women to educate themselves about the early warning signs of ovarian cancer.  WORD will be launching a new website before the end of 2010, and it is anticipated that this video will appear on both the WORD and Libby’s H*O*P*E* websites at that time.

“Remember Me”

Based upon instructions from Her Majesty Queen Elizabeth II (“Her Majesty”), a poem entitled, She Is Gone, was recited at the Queen Mother’s funeral, which was held in Westminster Abbey on April 9, 2002. The poem recitation sparked a glut of media interest because of its simple, upbeat nature – and mystery author, who was credited in the service program as “Anon” [i.e., Anonymous].  Apparently, Her Majesty found the poem while leafing through old memorial service books and she chose it to be read at her mother’s funeral, where it struck a chord with millions of mourners.

After the conclusion of the Queen Mother’s funeral, the BBC, The Times, and other U.K. media outlets took great effort to identify the author, with attributions going to, among others, Immanuel Kant and Joyce Grenfell. Eventually, it was discovered that the true author was Mr. David Harkins, who wrote the poem in 1981 while working at a bakery.  Mr. Harkins, who now works as an artist selling paintings over the Internet, said he “couldn’t believe his eyes” when he saw his poetry published in several newspapers after the funeral.

Quite shocked by all of the media attention, David Harkins sent the original manuscript of the poem to Prince Charles (of Wales), and St. James’s Palace replied thanking Mr. Harkins for explaining its origin. As it turned out, the poem was originally written by David Harkins in homage to an unrequited love. Mr. Harkins recalled: “I was 23 when I first met Anne Lloyd, my inspiration for the poem I called Remember Me.”  The reply received by David Harkins from the Prince of Wales’s office stated: “I have no doubt that it [Remember Me] will be reproduced on many occasions over the years to come. The Prince of Wales has asked me to send you his very best wishes.”

I chose to include Remember Me as part of our tribute to Libby for two reasons.  First, the poem is instructive as to how Libby would want all of us to continue on with our lives, energized by our loving memories of her.  Second, Libby would no doubt find great joy and humor in the fact that a talented baker from a small U.K. town became famous worldwide for his literary prowess rather than his pastries. The full text of Remember Me is provided below.

Remember Me

You can shed tears that she is gone

Or you can smile because she has lived

You can close your eyes and pray that she will come back

Or you can open your eyes and see all that she has left

Your heart can be empty because you can’t see her

Or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday

Or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone

Or you can cherish her memory and let it live on

You can cry and close your mind, be empty and turn your back

Or you can do what she would want: smile, open your eyes, love and go on.

— written by David Harkins, Silloth, Cumbria, U.K. (1981)

Did You Ever Hear An Angel Sing?

The inspirational story of Rhema Marvanne provides further proof that it is possible to “smile, open your eyes, love and go on,” after the death of a family member from ovarian cancer. It is difficult to believe that the life lesson highlighted by this touching story is provided to us through the example of a 7-year old child, albeit it a very talented one.

Rhema Marvanne was born on September 15, 2002.  Rhema lives with her father Teton Voraritskul, and a family pet dog named, “Mojo.” According to her father, Rhema began singing at the same time she began talking.

Rhema’s mother, Wendi Marvanne Voraritskul, loved Rhema with all of her heart. Wendi was diagnosed with ovarian cancer when Rhema was just 3 years old. Succumbing to the disease three years later, Wendi Marvanne died at the age of 36 on November 8, 2008.  According to Teton Voraritskul, most of Rhema’s memories with her mom were pleasant ones, but revolved around surgery, multiple chemotherapy treatments, sickness and struggle. Wendi was a strong believer in God and never complained about or questioned God during her illness. Teton explains that Wendi always encouraged those around her, even in the midst of her cancer battle. During Wendi’s final months, Rhema and Teton took care of her. Rhema spent almost every hour with her mother. When asked what her greatest accomplishment was prior to her death, Wendi simply replied, “Rhema.” A YouTube video featuring Wendi and her original songs is provided below. You can learn more about Wendi Marvanne’s life and music at www.jchouseofmercy.org.

It was less than a year ago that Rhema recorded her first song, Amazing Grace, and quickly became an Internet singing sensation. She obtains great inspiration from her mother, Wendi.  It is Rhema’s greatest hope to make her mother proud, both as a singer and as a “servant of God,” which is why she also performs for church congregations, non-profit organizations, charities, hospitals and special events.

Already a supremely talented singer, recording artist, and actor, Rhema counts the following among her recent accomplishments:

  • Acted in 1st featured film entitled Machine Gun Preacher, a Lionsgate production set to release in Fall 2011. The movie Machine Gun Preacher is based upon the true story of Sam Childers (portrayed by well-known actor Gerard Butler), a drug-dealing biker who finds religion and dedicates his life to helping Sudanese children escape the Lord’s Resistance Army (LRA) in Africa. Childers founded the Angels of East Africa, a children’s village located in southern Sudan, for the children he saves from the LRA.

During her free time Rhema enjoys playing with her friends and dolls, and loves to watch movies. The best description of Rhema is provided by her father:

…The best way to describe Rhema is that she has a beautiful heart and soul. She is sweet, kind, caring and most importantly pure in heart. Most people who have dealt with or are currently dealing with cancer, disease, challenges, etc…..see hope and inspiration in Rhema. The little girl who should have been scared or harmed by seeing her mother suffer and gone, is strong and perfect. I see Rhema as a cancer survivor. She gives me hope for goodness in mankind. God gave her a beautiful heart and the voice of an angel. Most people that hear her sing can not deny that God does speak through a child. Her voice touches people’s hearts.

Whenever we remember Libby, or any woman who lost her battle to ovarian cancer, we should follow Rhema’s example and heed the call to action set forth in the last line of the poem Remember Me, ” … smile, open your eyes, love and go on.”

Libby, we will always love you and keep your memory alive in our hearts and minds.

How Can You Help?

To support Libby’s H*O*P*E*™, you can make a donation ($10 minimum) through our Facebook Cause page.  All donations made to the Libby’s H*O*P*E*™ Facebook cause are designated for the benefit of the Ovarian Cancer Research Fund (OCRF). OCRF is one of the largest U.S. private, non-profit organizations dedicated to finding an early detection test, and ultimately a cure, for ovarian cancer.

If you are not a Facebook member, you can still make a donation through the Libby’s H*O*P*E*™ Facebook donation page (no membership or registration required).

If you are unable to donate, you can nevertheless support OCRF without any out-of-pocket cost by clicking on our “SocialVibe” widget that appears on the website homepage right sidebar, or by using our designated SocialVibe website. For each reader that clicks on the SocialVibe widget (or goes to our designated SocialVibe website), and watches the video presented and/or answers the question(s) listed, our current SocialVibe sponsor will donate money to OCRF on your behalf for ovarian cancer research. It’s fast & it’s free!

Special Thanks:

We would like to extend special thanks to Teton Voraritskul for allowing us to feature Rhema’s story and music videos, as well as the video of Wendi’s life.  To learn more about Rhema Marvanne and her music, go to www.RhemaMarvanne.com. Rhema’s songs are sold on iTunes®, Amazon.com, and RhemaMarvanne.com.

Sources:

  • Jemal A., Siegel R., Xu J. et. al. Cancer Statistics, 2010.  CA Cancer J Clin. 2010 Jul 7. [Epub ahead of print] [PMID: 20610543].
  • Remember Me, written by David Harkins, Silloth, Cumbria, U.K., PoeticExpressions.co.uk.

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*“Vox Populi,” a Latin phrase that means “voice of the people,” is a term often used in broadcast journalism to describe an interview of the “man on the street.”

In the spirit of Vox Populi, Libby’s H*O*P*E*™ searches online for original writings and visual media created by ovarian cancer survivors, survivors’ family members, cancer advocates, journalists, and health care professionals, which address one or more aspects of ovarian cancer within the context of daily life. The written and visual media features that we discover run the gamut; sometimes poignant, sometimes educational, sometimes touching, sometimes comedic, but always honest. The Vox Populi feature may take the form of an essay, editorial, poem, letter, story, song or video picture montage.

It is our hope that the Vox Populi feature will allow our readers to obtain, in some small way, a better understanding of how ovarian cancer impacts the life of a woman diagnosed with the disease and her family. We invite all readers to submit, or bring to our attention, original writings and visual media suitable for publication as Vox Populi features.

Gloria Johns Was Told “Ovarian Cancer Patients Don’t Live Long Enough … To Have Support Groups;” She Proved Otherwise

Every so often, you come across a story of hope, courage, and dogged perseverance that renews the spirit and lifts the soul.  Gloria Johns’ story is a classic example.  Gloria Johns is a 61 year old stage IV ovarian cancer survivor, who has battled the disease for nine years through five cancer recurrences.  When Gloria inquired about enrolling in an ovarian cancer support group after her initial diagnosis, she was informed by a local health care professional that “[o]varian cancer patients don’t live long enough … to have support groups.”  Gloria Johns proved otherwise by establishing the first ovarian cancer support group in Alachua County, Florida (which encompasses the city of Gainsville). … Recently, Gloria’s inspirational story was featured in an online article (reprinted in full below) written by Jessica Chapman for The High Springs Herald.

Every so often, you come across a story of hope, courage, and dogged perseverance that renews the spirit and lifts the soul.  Gloria Johns’ story is a classic example.  Gloria Johns is a 61 year old stage IV ovarian cancer survivor, who has battled the disease for nine years through five cancer recurrences.  When Gloria inquired about enrolling in an ovarian cancer support group after her initial diagnosis, she was informed by a local health care professional that “[o]varian cancer patients don’t live long enough … to have support groups.”  Gloria Johns proved otherwise by establishing the first ovarian cancer support group in Alachua County, Florida (which encompasses the city of Gainsville).  Always encouraging, Gloria tells the women in her support group to “never take a day for granted,” while reminding them to ignore statistics because “women with ovarian cancer are not numbers.”

Recently, Gloria’s inspirational story was featured in an online article (reprinted in full below) written by Jessica Chapman for the The High Springs Herald. At the end of the story, Gloria states:  “My goal in life now is to help others on this journey and give them hope to overcome. … I believe with all my heart that God has ordained this for my life to make me the person he wants me to be.”  Ralph Waldo Emerson, the great American poet and essayist, wrote: “… [T]o leave the world a better place…to know even one life has breathed easier because you have lived. This is to have succeeded.” By any measure, Gloria Johns has succeeded.  Gloria’s ongoing support group work represents not only a job well done, but a life well spent.

We want to extend special thanks to The High Springs Herald, Jessica Chapman (author), and Edward Izquierdo (photographer) for allowing us to reprint Gloria Johns’ inspirational story.  We also want to thank Gloria Johns for her living example of courage, perseverance, and most importantly, hope.

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Johns’ beats cancer five times, forms support group that no one said could exist

By Jessica Chapman For The High Springs Herald, High Springs, Florida.

ALACHUA — In 2002, at 2 p.m., Gloria Johns’ eyes rolled back in her head, and she was gone. Then she was floating above her body, watching as doctors worked on her.

Her platelet count had just dropped to four. A patient’s platelet count is at a dangerous level when it is below 10.

When she woke up at 10 p.m., the nurse told her someone had sat with her all day. The woman with long, blond hair never said anything. The nurse thought it was Johns’ daughter, but it wasn’t.

She walked into the elevator just as Johns woke up.

Johns believes an angel sat with her until she woke up.

Photo By Edward Izquierdo. When Gloria Johns first attempted to form a support group for ovarian cancer patients, she was told they don't live long enough to join a support group. She proved otherwise and has the photos (above) to show it.

Photo By Edward Izquierdo. When Gloria Johns first attempted to form a support group for ovarian cancer patients, she was told they don't live long enough to join a support group. She proved otherwise and has the photos (above) to show it.

In 2000, Johns, 61, was diagnosed with stage IV ovarian cancer. For nine years, she fought through five recurrences of cancer.

And beat them all.

Throughout all the support from friends and family over the years, one thing Johns didn’t have when she first began treatment was a support group that could relate to what she was going through.

“I went to the patient liaison at North Florida (Regional Medical Center) to get one (a support group when she was first diagnosed), and she [the patient liaison] said, ‘Ovarian cancer patients don’t live long enough for us to have support groups,’” Johns recalled as she sat at the dining table in her kitchen. “That was discouraging.”

Ovarian cancer is the fifth most common cancer-related death among women. That is more deaths than any other cancer of the female reproductive system, according to the American Cancer Society.

After her third recurrence with cancer, which is when her heart stopped, she decided to start her own support group, the first ovarian cancer support group in Alachua County [Florida].

Johns, who has lived in the Alachua area for 13 years, mentioned the support group to her doctor, who thought it was a wonderful idea, and she started the group, Johns elaborated.

Before support groups for ovarian cancer and the success in cancer research began, tips like the ones these women share were few and far between, Johns said.

Ovarian cancer was known as the “silent killer” because by the time it was detected, it usually had spread to other areas of the body, according to the Mayo Clinic.

“Only about 20 percent of ovarian cancers are found before tumor growth has spread beyond the ovaries,” according to the Mayo Clinic.

“It’s overwhelming what cancer is doing to people,” Johns added. “It changes you.”

Along with encouraging the women in her support group to “never take a day for granted,” she reminds them to not look at statistics. Women with ovarian cancer are not numbers, she said.

Statistics include a wide range of people. The women in statistics include the young, old, those with different stages of cancer and those with multiple recurrences, Johns said.

For example, those statistics might not be true for a young woman in stage two of cancer, she elaborated.

Johns does believe that encouraging and supporting people can help prevent future ovarian cancer-related deaths. Johns frequently e-mails and calls other ovarian cancer patients throughout the country in need of support.

Many of the people who contact her have heard of her through oncology offices throughout Gainesville [Florida].

But while much of her time is spent encouraging other cancer patients, she makes sure to take care of herself, too. She has a rule: after one of the women has gone to hospice or home to family, she will not go see them, but she will call.

“I think that would be extremely detrimental,” she said. “I’ve never done that. I’ve been real careful about getting extremely close to people.”

Six women in the group have died. She has called and sent cards to them all, but she prefers not to talk about them.

Despite the hardships and losses, Johns has learned an important lesson in her journey with cancer: everything has a purpose, she said.

She believes that God’s purpose for her was to use her experiences with cancer to help and encourage the women facing the same problems.

Through five recurrences with cancer, five different treatments, five times losing her hair, five times facing the fear of dying, Johns could have used the support from the group she started.

“The first recurrence is worse than the first time in my opinion,” Johns said. “The first recurrence is tough because you were praying you’d beat this thing.”

The first treatment she received was nine months of carboplatin and taxol chemotherapy. After she went through these chemotherapy treatments, she was in remission for 10 months. Then the cancer came back, and she had three more chemotherapy treatments during her first recurrence.

“It never held a whole year,” Johns said. “It seemed to come back every August.

When the cancer came back two years later, she had a stem cell transplant at Moffitt Cancer Center in Tampa.

“You’re so weak (after the transplant) you can’t work,” she said. “You can’t be around animals. You can’t be around dirt because your immune system is so shattered there’s just nothing there.”

However, a weak immune system didn’t slow her down. When Johns returned home, she kept up with her regular activities, including teaching the college and career Sunday school class and leading the church choir at Antioch Baptist Church in LaCrosse.

The treatment was supposed to keep cancer from coming back for four years, but despite her hard work at returning to a normal life, the cancer came back two years after the treatment.

She, again, went through six months of chemotherapy, but the cancer came back in less than a year. This is when she went into anaphylactic shock. The anaphylactic shock was a result of too much chemotherapy over the past years.

After recovering, she decided that as long as she was in remission from the one and a half chemotherapy treatments she received, she would give her body a rest and stop treatment.

Almost three years passed before the cancer came back for the last recurrence in 2007, but this time she was prepared, Johns said.

Johns and her doctors knew that if the cancer came back, she would go through CyberKnife radiation, a new treatment previously used on brain tumors. The doctors were unable to use radiation on ovarian cancer patients until the CyberKnife radiation treatments began.

Her energy level went up after the radiation, and as a result, she felt “like myself again,” she said.

Ever since that treatment, she has been in remission. Thanksgiving 2008 marked two years in remission.

“I’ve been trying to get there for eight and a half years,” she said.

Now, Johns said she makes sure to appreciate her time, and she knows that if she loses the fight with cancer, as a result of her support group, something will be left behind “that was worth doing.”

“My goal in life now is to help others on this journey and give them hope to overcome,” Johns said. “I believe with all my heart that God has ordained this for my life to make me the person he wants me to be.”

SourceJohns’ beats cancer five times, forms support group that no one said could exist, by Jessica Chapman, News section, The High Springs Herald, published online May 29, 2009.  The article and accompanying photograph were republished by Libby’s H*O*P*E*™ with the permission of the The High Springs Herald, Jessica Chapman (the author) and Edward Izquierdo (the photographer).

Husband’s Love For Wife Inspires A 9,000 Mile Bike Trek To Raise Money For Ovarian Cancer Awareness & Cancer Prevention

On May 15, 2009, Craig Broeder Ph.D., FACSM, FNAASO will embark upon a 100-day bike trek that will take him to 32 U.S. cities as part of  a 9,000 mile circumnavigation of the U.S.  Since July 2008, Craig has been planning this trip to honor his wife, Kay, in her 20th year of surviving clear cell ovarian cancer — a rare and particularly aggressive/chemoresistant form of the disease.  During the trip, Craig plans to raise $1 million dollars for ovarian cancer awareness and cancer prevention projects by inspiring one million individuals to contribute $1.00 dollar each. …

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Kick It For Kindra – An Uplifting Story of Community & “Paying It Forward”*

“When someone is going through a life-threatening illness, one of the greatest gifts to receive is the out-pouring love and support from the community,” Totushek said. “I have no idea how many people helped me, but I know I couldn’t have done it without them. You don’t have to know someone to help them.” Mitchell is grateful to Totushek and the girls for putting on the clinic. “I’m very surprised and humbled,” Mitchell said. “It’s a strange feeling that someone I never meant would want to do something so generous. She’s a hero.”

“Maria Totushek is all too familiar with cancer.

Though now in remission from breast cancer, which was diagnosed four years ago, Totushek remembers everything about the disease, including the love and support she received from family, friends and even from people she didn’t even know.

Now Totushek, along with a big assist from some Folsom teens, is helping someone else battling cancer. This isn’t a family member or friend. In fact, it’s someone none of them have never ever met.

Kindra Mitchell, 45, lives in Reno, NV, with her husband, Jerry, and is currently battling ovarian cancer. Mitchell, a mother of three girls ages 15 to 23, is friends with Jeff Phillips, a teacher at Blanche Sprentz Elementary School in Folsom [California], who also is a good friend of Totushek and lent a big hand to her when she was battling cancer. When Phillips told Totushek about his ailing friend, Totushek had to do something.

‘When someone is going through a life-threatening illness, one of the greatest gifts to receive is the out-pouring love and support from the community,’ Totushek said. ‘I have no idea how many people helped me, but I know I couldn’t have done it without them. You don’t have to know someone to help them.’ Mitchell is grateful to Totushek and the girls for putting on the clinic. ‘I’m very surprised and humbled,’ Mitchell said. ‘It’s a strange feeling that someone I never meant would want to do something so generous. She’s a hero.’

Totushek, who has four soccer-playing daughters between the ages of 12 and five, came up with the idea to hold a soccer clinic with all the proceeds going to Mitchell. The clinic, to be held next month, is called the Kick it for Kindra Soccer Clinic and Fundraiser. Since coming up with the idea, Totushek has left a majority of the details to some Folsom teens. To Totushek, this is where the true story lies. ‘These soccer-loving teens are coming together to support a family battling ovarian cancer,’ Totushek said. ‘The girls have taken on the goal to help raise money for a family in need. They’re volunteering their time and talent to give back to the community. I hope other teens can be inspired and people in the community can see that to help someone in need can turn into a blessing for an entire community.’

The teens working on the project include Vista del Lago freshmen Alexis Reinbolt and Catherine Lehman, Folsom High sophomore Laura Cox and freshman Chelsea Cino and St. Francis freshman Beth Balbierz. The girls have been meeting over the last month, planning the drills and skills to be taught at the clinic. All are enthusiastic about the clinic. ‘It’s a blessing to me because I love soccer and I’m helping someone out at the same time,’ Reinbolt said. ‘I’ve learned a lot about myself since I became involved in it.’ For Cox, cancer is something that she’s dealt with personally. ‘My grandma is a breast cancer survivor and I’m very grateful for that,’ Cox said. ‘My grandfather died of lung cancer. I know how families struggle with cancer. I really wanted to do something to fight against it.’ Like Reinbolt, Cino and Balbierz said they wanted to help with the clinic because of their love for soccer and because it’s for a good cause. As for Lehman, it’s an opportunity to help someone in need. ‘If I was in her position, I’d want someone to help me,’ Lehman said. ‘It feels good to give back, because a lot of people don’t get that opportunity. I never thought to do something like this, but I’m having a lot of fun with it. It feels good to be able to help someone.’

Totushek’s oldest daughter, 12-year-old Madison, has also chipped in and helped her mom with a lot of the behind-the-scenes work encompassing little yet often overlooked details.

There are three sessions to the Kick it for Kindra Soccer Clinic and Fundraiser. The clinic is for boys and girls ages five to nine years old and will be held June 7-8 from 10 to 11:30 a.m., June 10 and 12 from 6 to 7:30 p.m. and on June 21-22 from 10 to 11:30 a.m. The camp will be held at Ed Mitchell Park and costs $35. All the proceeds of the clinic will go the Mitchell family. ‘Right now we’ve got 50 kids signed up,’ Totushek said. ‘We can accommodate 300, but I’d be thrilled if we got 100.’

Anyone interested in participating in the camp can e-mail Totushek at mariatotushek@folsomsoccerclub.org or visit www.folsomsoccerclub.org for more details.”

[Quoted Source: Kick it for Kindra – Soccer clinic to raise funds for cancer patient, by Matt Long, The Folsom Telegraph, May 13, 2008.]

[Title Quote: The expression “pay it forward” is used to describe the concept of third party beneficiary in which a creditor offers the debtor the option of “paying” the debt forward by lending it to a third person instead of paying it back. In 2000, Catherine Ryan Hyde’s novel Pay It Forward was published and adapted into a Warner Brothers film bearing the same title. In Hyde’s book and the movie, “paying it forward” is described as an obligation to do three good deeds for others in repayment of a single good deed that one receives. Such good deeds should be things that the other person cannot accomplish on his or her own. In this way, the need to help one another can spread exponentially through society, creating a social movement with the goal of making the world a better place. The idea of the book has been championed in real life by the Pay It Forward Foundation. The Foundation focuses on bringing the idea of paying it forward to school age children, parents, and educators. The simple idea of doing good works for others to repay the good works received is easily conveyed to children and encourages them to be socially aware and take a role in making the world a better place. The main character of the book was a 12-year-old child, thus giving other children a similarly young role model to emulate.]

“Scars Are Just Tattoos With Better Stories”

This week H*O*P*E*™ highlights and honors Katie Fetzer. Katie is a 25-year old kindergartner teacher and an inspirational ovarian cancer survivor. A nagging pain that never went away and only seemed to grow in intensity prompted Fetzer to make a visit to her doctor in 2006. An ultrasound revealed a large mass on her left ovary, so she followed up with her gynecologist. Her gynecologist referred the young woman, who hadn’t even had the chance to begin her career as a teacher yet, to a gynecologic oncologist.

“He looked me right in the eye and said, ‘I will take care of this for you,'” Fetzer said of her oncologist. “And then,” she added, “I could breathe again.” Subsequent to the initial diagnosis, Fetzer had three surgeries-one to remove her left ovary as well as lymph nodes in her abdominal area; another to remove lymph nodes in her neck; and the last, which was in January 2007, to remove her remaining ovary. The nodes were removed because some of the cancerous cells invaded her lymphatic system. Fetzer also undergoes CT scans every six months as follow-up. She has not received radiation or chemotherapy because these types of treatments work best on fast-growing cells, and her cancer cells are slow-growing.

Katie’s gynecological oncologist went above and beyond when he helped her find a way to harvest some of her eggs before her ovaries were removed. The eggs were extracted and frozen right after Christmas 2006, before her second ovary was removed. “I call it my Christmas miracle,” she said, adding “It was a no-brainer for me to do this. I’ve always wanted to be a mom and to have that taken away from me was terrifying. … After the success of the egg harvesting, I feel so calm. I don’t have to worry.”

Now, Katie lives her life moment by moment, but certainly to its fullest. “It’s a sticky subject because these cells are still in your body and I think it’s a matter of if and when something triggers them,” she said. “… [O]ne of the biggest changes I’ve made is to not sweat the small stuff. … Now that I have basically a new shot – a new chance – I try to prioritize on what’s really important. Like, should I worry about tomorrow? Well, no, because tomorrow is not here.”

Fetzer is making a difference by speaking and educating others about ovarian cancer. Always a teacher at heart, Katie speaks to medical students and medical professionals in training as part of an educational ovarian cancer awareness program sponsored by the Ovarian Cancer National Alliance (OCNA). Through OCNA’s innovative educational program, Survivors Teaching Students: Saving Women’s Lives(SM), future healthcare professionals – physicians, nurse practitioners, nurses and physician assistants – increase their understanding of ovarian cancer symptoms and risk factors so that they can diagnose the disease when it is in its earlier, treatable stages.

Survivors Teaching Students brings ovarian cancer survivors, like Katie, into medical school classrooms to share their stories and key information about the disease. The program is now conducted in more than 50 medical schools around the country and in a number of nurse practitioner, nursing and physician assistant training programs.

During Katie’s teaching sessions, she tells her story to illustrate the difficulty of early diagnosis and the resulting extended and recurring treatment, thereby putting a face and voice to the disease. In turn, Katie’s “students” gain insights into listening to a patient’s concerns and become sensitized to the psychosocial aspects of ovarian cancer as well as the need for early detection.

Katie is in her second year of teaching for the school district of East Troy, Wisconsin. Her kindergartners love her — so much so that her students sent her handmade get well cards when she was hospitalized and made her a quilt. As a result of her earlier surgeries, Katie has a 9-inch abdominal scar. When Katie’s kindergartner students ask if she has a scar from her surgery, Katie simply smiles and tells them that “scars are just tattoos with better stories.”

Katie’s courage and her willingness to make a difference in the fight against ovarian cancer was highlighted in a television news story created by ABC affiliate WISN (Channel 12). The inspirational WISN video is provided below.

[Quoted Source: Twenty-four candles – plus five – Patient celebrates Aurora Women’s Pavilion’s milestone, by Sue Suleski, WestAllisNOW.com, June 29, 2007.]

Young Cancer Survivor Teaches Medical Students About the Warning Signs and Symptoms of Ovarian Cancer

WISN – Channel 12 News Story

“Life Must Be Measured in Its Beauty, Not Its Length”

The title quote above was spoken by Elana Waldman, who is the inspirational ovarian cancer survivor highlighted and honored by H*O*P*E* this week. Simply put, Elana Waldman is an outstanding advocate for cancer research. She educated and inspired luncheon guests at the 2007 Israel Cancer Research Fund (ICRF) Women of Action Luncheon held in Toronto, Canada on April 19, 2007. During her talk, Elana provided an account of her illness and discussed her decision to be the first person in Canada to try an unconventional chemotherapy protocol. “I’m young,” Elana says, “my daughter is young, and the numbers are stacked against me. You do whatever you have to do to get the most time possible.” “Cancer,” Elana says, “has given me a clearer understanding of what life is about.”

As you will see from the excerpt of her April 2007 speech and the video below, “Elana’s courageous battle with ovarian cancer will touch your heart. Elana’s appreciation for everyday miracles will open your eyes. Elana’s determination to help others will inspire you …”

“…I was diagnosed 20 months ago on August 19, 2005. Time is running.

On September 23, 2005, after extensive surgery, I was told the cancer was stage 3c despite my doctor’s earlier belief that it was not that advanced. The diagnosis meant that I needed chemotherapy and only had a 30% chance of surviving 5 years from that point. At 32 years old, while trying to build my family and with a 2 year old daughter, this news was devastating.

When I was told the statistics though, I guess I couldn’t wrap my head around them because I never thought I would die. No one I knew had ever died from cancer. My own mother had fought and beat the disease twice. I knew I had a tough road ahead of me but I always focused on the light at the end of the tunnel and just did what I had to do to get better. It was hard but many others had done it before me and I knew I could and had to do it for my family…..

My cancer has returned. When I was told this time, the news hit me like a Mack truck. The numbers for a recurrence are even worse than for an original diagnosis and my chances for survival are small. I understood the numbers this time and the implications for me and my family. The diagnosis shook me to my core and I had a huge reality check. I have cancer, a potentially fatal disease. This is not something that regular medication can treat and I am now literally fighting for my life, everyday. I have given up my career to focus on my health and my family. I want to enjoy as much time as I can while I feel strong and healthy. I want to be a spokesperson for ovarian cancer for a long time but more importantly I want to see my daughter grow up and I want to grow old with my husband.

These simple goals in life that I now set for myself are in jeopardy so I have truly learned to enjoy all the everyday miracles that I do have – my daughter’s smile, my husband’s kiss, my mother’s laugh. I am more than this disease and I do not want to let it take away everything else that makes me the person that I am. I am asking you to help me continue to enjoy these miracles. Your donations and your generosity allow our scientists to do cutting edge research which will hopefully lead to a cure for cancer. Your support for ICRF directly benefits people who are battling cancer and on all their behalves, I say thank you.”

[Quoted Sources: Israel Cancer Research Fund Newsletter – Issue #5, Summer 2007; “Like Getting Hit By a Mack Truck: One Woman’s Fight With Cancer,” Chaim Steinmetz – Happiness Warrior Blog, April 25, 2007.

Is It Possible to Have Ovarian Cancer at a Young Age?

The ovarian cancer survivor highlighted this week is Maddie Kullen. Mattie is different from virtually all other ovarian cancer survivors because she was diagnosed with the disease when she was 6 years old. Upon diagnosis, Maddie had a 6-inch tumor removed at Children’s Hospital Boston, followed by 16 weeks of chemotherapy. Maddie’s treatments are now over and she is cancer-free.

If you think a 6 year old cannot make a difference in the fight against ovarian cancer, you are absolutely wrong. Maddie is a spokesperson for Ovations for the Cure and participated in that group’s ovarian cancer awareness public service announcement. Maddie was also part of the Boston Marathon Jimmy Fund Walk. Her best idea was the creation of a program at Children’s Hospital Boston that provides young cancer patients with an ice cream break each week. This program is called “Sundaes on Saturday,” and it is supported by monies raised through Kullen family fundraisers. Please take time to watch Maddie’s ovarian cancer awareness public announcement below and visit Ovations for the Cure if you are interested in finding out more about the mission of that group.

When asked by a WBZTV Boston journalist to comment on her appearance in the Ovations for the Cure ovarian cancer awareness spot, Maddie simply responded, “Cool! And then once I saw the commercial I went back to watching kid shows.”

Comment: Although Maddie’s ovarian cancer diagnosis represents an extremely rare case, it is important to note that ovarian cancer does not discriminate when it comes to age, race or financial status. For more information regarding the early warning signs and symptoms of ovarian cancer, visit the H*O*P*E* blog page entitled, “Warning Signs and Symptoms.”

Maddie Kullen in Ovations For the Cure Ovarian Cancer Public Service Announcement

Bald Is Beautiful!

Periodically, the H*O*P*E* Blog will highlight a cancer survivor that makes a difference. Sharon Blynn is a prime example. In October 2000, Sharon Blynn was visiting her family in Miami when she discovered that her stomach pains were not caused by irritable bowel syndrome. Rather, the pain was caused by a rare, non-invasive form of ovarian cancer. Local doctors informed her that she would need surgery and chemotherapy.Rather than return to her home in New York, Sharon decided to seek treatment in Miami with the support of her family — the anticipated short family visit turned into a three year journey.

During her chemotherapy treatments, Sharon, who was in her 20s, recalls being the youngest ovarian cancer patient in the room. She also remembers her twin sister sleeping in the chair beside her bed and the women with cancer who would not look at themselves in the mirror because of surgery or hair loss.

Sharon was inspired by her experience and the people she met throughout her journey to start a website, baldisbeautiful.org, which is all about helping women living with cancer feel beautiful — she’s been shaving her head ever since. “Through my Bald Is Beautiful work,” she says, “I have found a new focus and purpose – a new level of joy.”

Sharon credits cancer with giving her a deeper sense of who she is and the importance of a healthy mind-body-spirit lifestyle. The disease also intensified her desire to share that message with people. “Cancer brought me closer to feeling alive in every part of my life, from how I feel about myself, to how I feel about my relationships with my family and friends, and my relationship with the whole world around me.” Source: [Bristol-Myers Squib website].

I encourage you to visit Sharon’s website and view her YouTube video — by doing so, you will truly discover her honesty, talent, and resilient human spirit.

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’”
–Mary Anne Radmacher

There Is Always Hope — Just Ask Sean Swarner!

Sean Swarner’s ESPN Segment


CLIMB EVERY MOUNTAIN IN LIFE,” by Sean Swarner.

“I’m actually the first (and only) cancer survivor to summit the world’s highest mountain … Mt. Everest. When I was only 13, I was diagnosed with Hodgkin’s disease and given three months to live. When I was 15, I was diagnosed with Askin’s Sarcoma. The prognosis was much worse as the doctors gave me only two weeks to live. Again, I survived. …

Being the only person in the world to have ever had these two cancers, I really felt I should share my story to help motivate others and influence lives. On May 16th, 2002 at 9:32am, I became the first cancer survivor to summit Mt. Everest.

Since then, I have been lucky enough to reach the summits of three more of the world’s seven highest peaks and have spoken internationally about my life and adventures to countless people and organizations. On the summit of Everest I brought a flag adorned with names of people who have been affected by cancer and left it on the top of the world forever commemorating the struggle of cancer patients worldwide.

I did the same to the highest point in Africa, Europe and just recently returned from 23,000-foot Aconcagua in South America! My ultimate goal is to climb the highest mountain on each continent AND trek to the North and South poles.

… The reason for these expeditions is to inspire those affected by cancer (as well as anyone with a pulse!) to dream big and never give up. ”

Sean Swarner was the recipient of the “Don’t Ever Give Up Award” presented by the Jimmy V Foundation and ESPN in 2007. Sean told ESPN Radio’s Bob Valvano, brother of Jimmy, that he would have been more likely to win the lottery four or five times with the same numbers than to have survived both cancers.

Sean did survive and achieved this monumental feat with only one fully functioning lung due to removal of a golf ball sized tumor (and the lung in which it was embedded) as part of his Askin’s diagnosis. He graduated from high school in 1993. To date, Sean has climbed the “Seven Summits” of the world — the tallest mountain peaks located on each of the seven continents — and provides hope and inspiration to thousands if not millions of people living with cancer. Sean’s ultimate goal is to complete the “Explorer’s Grand Slam” — Seven Summits, North and South Geographical Poles and North and South Magnetic Poles. To date, only four other individuals accomplished this feat.

Sean established his own foundation known as “The Cancer Climber Association,” which promotes cancer awareness and helps raise money for cancer research. He also authored “Keep Climbing,” which is the title of his book that recounts his story and journey from the depths of his near death experience to the peaks that he climbed to reach the top of the world 17 years later.

If you were recently diagnosed with ovarian cancer, do not let anyone tell you that there is no hope. Just ask Sean Warner!