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About a month ago, I learned about Landon Cooper and Miles2Give.org as I was surfing around on Twitter. I was instantly drawn in! My first thought was, "When will this guy be running through Utah? I want to meet up and run with him." So, I reached out to Landon on Twitter and soon I received an email from the Miles2Give public relations to contact them at an email address.

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The SFA is delighted to introduce guest blogger Judith Hannan, who has been a writer for over 25 years.  She is the author of Motherhood Exaggerated (CavanKerry Press, 2012), her memoir of discovery and transformation during her daughter’s sarcoma cancer treatment and her transition into survival.  Ms. Hannan’s daughter Nadia was presented with the SFA Courage Award at the SFA Annual Gala in 2010.  She is a featured speaker, a teacher of writing about personal experience to homeless mothers and at-risk adolescents and we are pleased that she has agreed to share her insights about her journey and beyond through a blog series.

Stories are antibodies against illness and pain.   

-  Anatole Broyard

 ”Owee.  My jaw cracked.”  It was October 31, 2000 and my eight-year-old daughter Nadia  had bitten into a piece of her Halloween candy, unaware that a rare bone cancer, Ewing’s sarcoma, was about to be revealed. What followed was intensive chemotherapy, multiple surgeries and hospital stays.  But the deeper event was the transformation I went through as a mother and in my relationship with Nadia.  Even before her diagnosis, I wasn’t sure I knew how to raise Nadia.  She challenged me with existential questions about death, she told me she used to be my mother, she refused my help by repeating her first and most frequently spoken words, “I do.”  She begged me to watch her, not help, as she mastered one skill after another, not as if she were learning them for the first time but as if she was being reminded of what she once knew.  But as I began to shepherd Nadia through illness and into survival I began to discern what she needed me to be.  My book, Motherhood Exaggerated, is my chronicle of that journey to awareness.

Since my book was published, the most frequent question I am asked is why I wrote it.  My immediate response is that I am a writer, that’s what I do.  When an event burrows deeply into my life, I have no choice but to tell the story.  Throughout Nadia’s illness, I recorded my thoughts nearly every day, and I continued writing in the years that followed, until her survival was something I could count on.  But that doesn’t completely explain why I wrote a book, which requires an impulse that goes beyond recording events and ruminations.

The second reason is to be a mirror for others.  One of the first non-medical outings Nadia and I took after she finished treatment was to our neighborhood bookstore.  We were searching for ourselves—she, a young patient; me, a mother of an ill child—reflected in the tale of someone else’s experience.  As the late author Reynolds Price wrote in A Whole New Life, his chronicle of his treatment for a spinal cord tumor, “I needed to read some story that paralleled, at whatever distance, my unfolding bafflement—some honest report from a similar war …”   But Nadia and I were searching a desert which held no thirst-quenching elixir for her and very little for me.  There were many books about autism, a few about eating disorders, and none about a mother caring for a child who survived a life-threatening illness.

Books about death and grief were more plentiful; perhaps the extreme tragedy makes it more impossible to resist telling the story.  While these books are important and need to be written, they are shaped by their grief.  I was looking not for an ode or elegy but for a messy and uncertain narrative.  I knew I had to write my own story.  At the time, I was still so connected to illness and hospitals that my initial narrative was self-centered, the writing style overblown because, while the storm that had roiled my emotional ocean had passed, the waves shuddering through me were still large and white-capped.  It was not much more than a disguised daily journal.  I wasn’t telling a story about people but about Broviacs, IVs, scans, chemo drugs, etc.

I saved those initial ramblings until I was ready to weave them into a larger picture.  I knew I would have to write about my own mother and how she raised me, about my relationship with my husband, about being a mother not just to Nadia but her older sister and twin brother.  I had to write about the role of faith and the solace I had once found in nature.  I waited three years, when I thought I had moved beyond my narrow understanding of events.  I was ready, I thought, to meet myself on the page, to write the pain with honesty and without flinching.  But the person I met there wasn’t very nice.  I wasn’t being brutally honest, just brutal.  I was writing without compassion and so was blind to any understanding of how I had become transformed.

It would be another five years before I could tell the story that needed to be told.   It turned out to be different from the one I had assumed I wanted to read eight years earlier.  Indeed, if I had read that one, it would have been more damaging than helpful.  It would have kept me tethered to the past as if it were still the present.  The essential component to any good narrative is surprising yourself with a discovered truth.  Without “aha!” moments you are venting, not healing.  My “aha” moments came when I stopped making myself the center of all my thoughts.  The way I first incorporated my mother into my story was to show her as being less than compassionate when my sister or I were sick and of relating her experience with depression when I was in my early teens by saying only how it affected me.  But the whole story included the fact that my grandmother had had a stroke when my mother was six; she lived but was so disabled my mother was essentially unmothered.  How could I not feel for that little girl and recognize how much my mother must have had to learn in order to raise her own children?  And toward my husband I had to show my understanding of the role I played in keeping him out of the children’s lives.  When it came to caring for Nadia my burden was so much greater than his and my instinct was to play the martyr rather than discovering an opportunity for transformation and opening the door wider for my husband.

So I wrote Motherhood Exaggerated as a route to personal transformation and as a mirror for others.  But there is third reason.  For the past several years, I have volunteered at the Children’s Museum of Manhattan helping homeless mothers write about personal experience.  Some of their most profound work lets the reader into their lives during moments when no one can see them.  It could be when a special interaction with a child confirms for them that they are good mothers or when they have conquered a negative impulse or experienced a time of despair.  It could paint a portrait of what happens in the middle of the night when darkness and the soul have a private conversation.

There is a scene early in Motherhood Exaggerated depicting a night of pain for Nadia, which I am unable to soothe with my meager stockpile of tricks and drugs.  Near dawn, I’m angry.  “I want to wake everyone in the house.  ‘See, see!’ I want to holler.  ‘This is what I have to deal with while all of you are safe in your beds!’”  So I wrote Motherhood Exaggerated not just to be a mirror in which you can find yourself—as a mother or father, a daughter or son, a medical professional or a caregiver.  It is also an open door; a way for you to see me and others like me.

Nadia is now twelve years out of treatment.  She is studying dance and in those moments when I see her on stage, I can see my true daughter, no longer through the scrim of illness.  If I wrote Motherhood Exaggerated today, what would I say differently?  I would probably write more about the long-term impact of survival.  While I didn’t complete the book until eight years after Nadia finished treatment, it still only covers the year of her illness and three years into her good health.  The years since have continued to be filled, if not with cancer, then with the cancer experience.  Nadia’s transition to college, in particular, reawakened every dormant emotional memory for me, like a bee hive coming alive in the morning after a cold night.  At night, after the third or fourth sobbing call from Nadia, I would lie in bed repeating to myself, “It’s not cancer. It’s not cancer.”

I would also like to have more conversations with Nadia about her memories of that time and incorporate them into the story to broaden its view.  When she read the book, which she did after asking for the first printed copy while insisting she would never read it, all Nadia had to say was, “I think we remember some things differently.”  It wasn’t the right time to ask her what those things were.  Only this year do I see in Nadia the “I do” girl she was pre-cancer.  But I do want to know what she would say if I asked.

And I think I can still find deeper levels of compassion.  To do that requires moving beyond motherhood exaggerated to Judith Hannan non-exaggerated.  As I grow beyond the daily tasks of mothering, what does it mean to be a parent to adult children and spouse to someone with whom childrearing is no longer a major ingredient in the glue keeping us together?  If I learned anything while caring for Nadia and through the experience of writing, it is that I had kept too tight a control on my family.  I didn’t laugh enough.  I was stubborn and didn’t always admit the viewpoints of others.  Who am I now is the question I, and we all, need to ask ourselves as routinely as we brush our teeth, and how do I use this continually transforming person I am to live my life fully, without defense, and in the most giving way possible.

Motherhood Exaggerated can be ordered through your independent bookstore or by going to www.motherhoodexaggerated.com, www.amazon.com, or www.barnesandnoble.com.

The love of my life, Paul Rumely, was diagnosed nine years ago with a soft tissue sarcoma.  Sarcoma?  We had never even heard of the disease and his was so rare that there were hardly any statistics.

Approximately one year later, after having fought an amazingly courageous battle, Paul passed away at age 59 in 2005, with even the most notable doctor imaginable in charge of his case.

The Rumely Family

Since 2005, it has been my great pleasure and honor to be involved with the Sarcoma Foundation of America in his memory.  I just couldn’t imagine not being associated, as it gives me such satisfaction and pride.  I have a wonderful understanding of what is being done for the future of sarcoma – through the work of the SFA – in helping to find a cure. This gives me great relief and hope, and it should for all concerned.

The SFA is extremely important and active in the future of sarcoma patients, by helping in many ways to fund research for sarcoma treatments.  In April of last year, a new therapy for sarcoma was approved by the FDA for soft tissue sarcoma.  The SFA fought tirelessly for the approval and a dream was heard and realized.  Bravo!

And so we look to the future and the different types of sarcoma and realize that only with hard work, determination, and HOPE, that there will be a cure in the future.

I am optimistic and you should be as well!

Cookie Rumely is a dedicated supporter of the SFA who shares our goal of finding the cure for sarcoma.  As a committee member and previous Co-Chair of the successful annual gala in New York City, Cookie is a strong advocate of increasing SFA sarcoma research funds.  Cookie is a SFA Lifetime Giving Legacy Wall Partner.  Her commitment to SFA’s mission is exemplary and appreciated.

Earlier this week, Mark Thornton, President of the SFA Board of Directors, sent a letter to SFA members and donors thanking them for the role that they played in the successes that the organization – and the sarcoma community – had in 2012.  We’d like to share some of this letter with you.

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Dear SFA Friend,

On behalf of the Sarcoma Foundation of America, I would like to thank you for your wonderful support to the SFA.  We sincerely thank you for your commitment to our mission to advocate for increased research to find new and better therapies for treating patients with sarcoma.  The resolve of the SFA and our generous contributors has given us the opportunity to move toward the cure for sarcoma.  I am writing you today because you are a vital member of our sarcoma community and share in the resolve of all sarcoma patients, their families, friends and caretakers to eradicate this rare cancer.

The past year has been a transformational one in our community!  On the drug development front, the first new therapy for sarcoma in over 30 years, Votrient, was approved by the FDA in April!  Votrient will prolong the time to progression in nearly all sarcoma patients to one degree or another, but more importantly it begins a new era where other therapies will be combined with Votrient to hopefully synergize their actions against the disease. Your SFA was right there when the FDA reviewed Votrient for approval, advocating publically for its quick approval, and in the process of a cordial and respectful advocacy effort with the FDA has opened new doors for future collaborations to streamline drug development pathways for sarcoma and its subtypes. 

On the research front, the SFA funded our first three-year Conquer Cancer Foundation Career Development Award, is currently funding our sixth Conquer Cancer Foundation Young Investigator Award, and funded 10 additional SFA sarcoma research grants worth $500,000! These grants are designed to foster the world’s best scientists in the field of sarcoma and ignite ideas for new research avenues to pursue in the quest to find new treatments to eradicate sarcoma.

The SFA has continued to advance our mission on many additional fronts including growing our Sarcoma Patient Registry to over 1,400 patients! The Registry is allowing us to match patients in need to clinical trials and is providing outcomes data for epidemiologic research studies to understand better sarcoma’s natural history. Future plans are to add patient genomic data, which combined with clinical data, will help move us toward the vision one day soon of individualized treatment programs.

With your help, our programs have touched the lives of so many. Though we have made progress, there is still an urgent need for further sarcoma research, education and advocacy. Sarcoma affects approximately 12,000 Americans each year, and 15% of all childhood cancer is sarcoma.  It can attack anyone, at any time, and is often diagnosed too late, leaving those affected with few treatment options.  The sarcoma research that is so vital to finding the cure for sarcoma relies on contributions from everyone.

Now, in a pivotal move toward the cure, the SFA has announced the creation of the VISION 2020 Campaign to Cure Sarcoma. The goal of this new campaign is to direct all of the energy and focus of the SFA toward successfully impacting the development and FDA approval of five new sarcoma therapies by the year 2020.

Thank you, once again, for your continued support. Together, we have the very real opportunity of finding the cure in our time.

Sincerely,

Mark Thornton, MD, MPH, PhD

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Certainly, 2012 was a remarkable year.  But, we still have much work to do.  To increase sarcoma research funds to find the cure, we need your continued commitment and help.  Please make your tax-deductible, year-end contribution to the SFA and be a partner with us toward better treatments for sarcoma patients and for people affected by cancer around the world.

Tony Ferlenda, SFA’s new CEO

Three weeks ago, I joined the Sarcoma Foundation of America as its new CEO.  What an honor and privilege it is to be part of the SFA family – and it is a family.  A family of dedicated employees, board members and volunteers; business, hospital and non-profit partners; financial benefactors and state chapter leaders; survivors, family members and friends.  All working to support the SFA mission to find the cure in our time.  I am inspired by your courage, commitment and conviction.

I still have a lot to learn, but I do know this: To achieve our mission, we need more resources.  Simply stated, to develop new drugs to treat and someday cure sarcoma, we need to fund more research.  To fund more research, we need to raise more money.  To raise more money, we need help from our family.  Simple, but not easy.  I am happy to say, however, that our Board of Directors has already taken the initiative to develop a plan to get us there.  It is our VISION 2020 Campaign to Cure Sarcoma plan.

Some plan highlights:

• To expand and improve our Chapter Leader network, including having a Leader in every state by 2017
• To increase our revenue from $2 million to $10 million by 2017
• To have 3 new sarcoma drugs approved by the FDA by 2017, and 5 by 2020
• To ensure we have the kind of leadership (volunteer and paid) to drive the kind of growth needed to support the Vision.

These are ambitious goals.  But the Board has wisely decided that we need to be more ambitious, even aggressive, in pursuing our mission.

You’ll be reading more about the VISION 2020 plan in the months and years to come, but as a member of the SFA family, we hope that you actively support our pursuit of the above goals.  Because this is what’s needed to “find the cure in our time.”

When I was just 3 years old, I was playing in my room when my mom noticed a strange growth on the top of my tongue. At first my parents thought it was just an infection.  But after weeks went by and there was no change in looks, they started to get worried, and with my dad being a doctor, not even he knew what it was. I was taken to several different doctors when I was finally diagnosed with Alveolar Soft Part Sarcoma, a rare (even for sarcomas) malignant tumor found in the soft tissue of the body. Cancer? How can that be?  I was only 3.

This picture was taken the same month I was diagnosed with sarcoma. I was just 3 years old.

I recall stories my parents told me about when they found out. They, as any parents would be, were terrified.  And although it was just a little thing on my tongue, if not for my mom finding it so quickly, it could have spread throughout my body. I do not remember much about that period, just sitting on the hospital bed eating Trix ice pops while clutching a teddy bear the hospital gave me. After two surgeries, I lost a piece of my tongue, but fortunately, I maintain complete function and I can proudly say I am a cancer survivor!

This experience motivated my parents to start the Sarcoma Foundation of America (SFA) in my honor. When I was first diagnosed, they looked around for an organization that they could join to help find the cure for this never-heard-of-before cancer.  They found none.  Nothing they were looking for anyway that focused on research.  For this reason, they decided they could just start something themselves.  They teamed up with Dr. John Brooks, and two years after my diagnosis, the SFA was born.  Over the last 12 years, the SFA has raised over five million dollars for cancer research!

My battle with sarcoma inspired my parents, along with Dr. John Brooks, to establish the Sarcoma Foundation of America. From left: John Brooks, MD, Patricia Thornton, Mark Thornton, MD, MPH, PhD.

Though sarcoma has definitely been a part of my life, I’m glad I don’t dwell on it and let it control me.  I guess it’s a good thing I don’t remember a lot of the tough things I had to go through to kill the cancer.  Maybe it would be different if I did.  Instead, I can focus on what pretty much every teenager my age is focusing on, getting my license, graduating high school, and getting accepted into a college, and when I can, volunteering at the SFA!

Jeff is now 17 years old and is in his senior year of high school.  He is a 14-year survivor of sarcoma.

Volunteerism

by Sue Embree-Davis, SFA Chapter Leader, California

Volunteers help increase awareness and raise additional funds for research!

“I expect to pass through this life but once. If therefore there be any kindness I can show, or any good thing I can do to any fellow being, let me do it now, and not defer or neglect it, as I shall not pass this way again.” (accredited to both William Penn and Stephen Grellet)

This is a favorite motto of mine.  I was surprised to find that its origin can be traced back to the 1600’s.  I certainly agree that it was good advice back then, and continues to be great advice today.

Why volunteer?  Here are only a few of the benefits of volunteering:

1. It takes us outside our four walls, often relieving loneliness or boredom.
2. We meet new people, perhaps making a new friend or two.
3. Volunteering is extremely beneficial to the groups, organizations, or companies for which we offer our knowledge, enthusiasm, and hours of labor free of charge.
4. We often receive appreciation from those we help, allowing us to feel needed and useful.
5. If we volunteer for a cause which has touched our lives personally, we have the knowledge that we are helping someone else to weather a difficult time in their life, or to live a better and fuller life than might have been possible before.

As I sit here writing this article I am volunteering my time to a cause that is very near to my heart, finding a cure for sarcoma cancers through the efforts of the Sarcoma Foundation of America (SFA).  I am the volunteer SFA Chapter Leader for the state of California, and I have had the privilege of serving in this position since 2011.

Yes, volunteering with the SFA is helping me to recover and give purpose to some of the pain my family has felt as the result of our battle with a sarcoma cancer.  There are an endless number of ways for you to volunteer with SFA in support of the mission to find the cure for these devastating cancers!

The Pittsburgh Cure Sarcoma 5K Run/Walk could not have been the huge success that it was without the support of volunteers!

Here are just a few:

• If there is no one currently volunteering in your state as the volunteer chapter leader of the SFA (click on your state under SFA chapters to find out) consider taking on this important role
• Volunteer to assist the SFA Chapter Leader in your state
• Hold a fundraiser to support SFA (I just raised almost $2000 for SFA by inviting friends and family to recognize my birthday with donations to SFA in lieu of gifts)
• Distribute SFA materials to your local hospital, schools and universities, cancer centers, community and infusion centers
• Share your SFA connection with nurses and ask them to share SFA information with their patients
• Ask your friends and family to JOIN SFA – it is free – www.curesarcoma.org
• Ask your friends and family to follow SFA on Facebook, Twitter, and Pinterest
• Help SFA develop online auction opportunities
• And we welcome any volunteer ideas you have to support SFA’s work and mission with your time or contributions!

Volunteers helped make the Ronny Gras event a huge success as well!

We give of ourselves and our time to others when we volunteer, but over and over I hear people say they receive back so much more than they give!  Today, consider volunteering for SFA to make your positive impact on the cure for sarcoma!

The fact is, Rita’s story is one of many.  But she was given an opportunity that most will never have – the opportunity to share her experience with the world and a platform with which to raise awareness.  There are countless untold stories of people who have been impacted by this terrible disease.  There are patients who are still engaged in their own battle with sarcoma.  There are families who have lost loved ones.  And there are the survivors who have faced a sarcoma diagnosis and have come out on the other side.

It is our responsibility to build upon this amazing opportunity.  We have to keep up this momentum and not let the world forget about what they saw on television.

But how can we all do this?

We at the SFA will continue our mission to advocate for increased research to find new and better therapies with which to treat patients with sarcoma. We vow to work every day to bring attention to sarcoma, to fund cutting-edge research, and to ultimately find the cure.  We also need your help to accomplish all of this.

• Share your story with SFA – Help us tell others why the SFA’s focus on research is important.
• Raise money for sarcoma research – Hold a fundraiser, set up a recognition page for donations, and/or pull up the SFA website on any electronic device and show your friends/families how easy it is to donate.
• Share the SFA’s mission with others – You can help by distributing SFA/sarcoma materials to infusion centers, radiology centers, hospitals, nurses and doctor offices.
• Enroll in the SFA registry – The Sarcoma Patient Registry collects and manages data about sarcoma patients, helping physicians and researchers in every facet of patient care, from investigating the cause of cancer, to making the diagnosis, and tracking the effectiveness of different treatments.
• Donate tissue – The SFA has partnered with the National Disease Research Interchange (NDRI), a nonprofit organization, to provide you with the opportunity to donate tissues and have those tissues distributed to scientists who are studying different aspects of sarcoma and related cancers.  Click here for more information on the SFA’s partnership with the NDRI.

Together, we can find the cure in our time!

So, the SFA is thrilled that all of America is about to hear the story of one courageous woman who was willing to share the details of her fight against sarcoma.  Rita Saverino Romeo, an SFA Board Member and 2011 SFA Courage Award recipient, will be featured in the final episode of ABC’s “NY Med,” a documentary series that follows the doctors and patients at New York-Presbyterian Hospital in New York City.  The episode featuring Rita will air at 10:00 pm EDT on Wednesday, August 22.  During the finale of the series, viewers will have the chance to see part of the 18-hour surgery Rita underwent to remove her grapefruit-sized tumor.

Rita Saverino Romeo

Why did Rita decide to share her story on national television?  We’ll let her tell you in her own words.

“Cancer was something that happened to other people, until it happened to me.  There is no good cancer, but when you are told you have a rare cancer, not only is your life turned upside down, but it seems that doctors forget to tell you about hope. And hope is exactly what is needed at this most challenging time.

After my diagnosis – and by the grace of God – there were many serendipitous events.  First, I found many survivors that beat the statistics and were shining examples of courage in action.  Then I found the Sarcoma Foundation of America, whose mission it is to advocate for more research for sarcoma therapies.  Lastly, I found Dr. Tomoaki Kato, who after looking at my scans said, “It is difficult, but possible.” After seven surgeons said that I was inoperable, this was music to my ears.  I remember thinking, “If he can do possible, I will do difficult.” 

Once the reality sunk in about my diagnosis, I realized that in addition to being positive about how I would deal with the cancer, I could make a difference by helping to raise awareness of sarcoma and raise research dollars for more therapies leading to a cure. 

There was yet another serendipitous event.  ABC was filming “NY Med” at Columbia Presbyterian around the time of my surgery.   Together with my husband, we agreed it would make sense to share our story if only to raise awareness for the need for more research for this orphan cancer and give hope to another sarcoma patient.

Rare does not need to mean fatal.  Unfortunately because of the limited research for this orphan cancer it often does mean fatal.”

You can help Rita in her desire to share this story with others.  Please tune in to “NY Med” at 10:00 pm EDT this Wednesday night.  Ask your friends and family to tune in as well.  Let’s all take advantage of this rare opportunity to raise awareness for sarcoma.

Want to know more about Rita and her “NY Med” appearance?  Check out these links for more information:

Synopsis of Rita’s Episode of “NY Med”

Rita’s “NY Med” profile

SFA Press Release

Rita’s 2011 SFA Courage Award Video

Matthew Alsante, SFA Executive Director

The SFA was recently approached to participate in a weekly radio show broadcast here in the nation’s capital.  We were thrilled to have the opportunity to reach such a large audience and share with them our mission to find the cure in our time!  SFA’s Executive Director, Matthew Alsante, was  the special guest on the Fresh Perspective radio show on 94.7 Fresh FM, a Washington, DC, radio station.  He did a wonderful job explaining what sarcoma is, how more research is needed to find new and better therapies, and how the SFA is leading the charge to the find the cure for this rare cancer.

Please take the time to listen to this very informative interview and learn more about sarcoma and the work of the SFA.

Click here to listen to the radio interview