Advocacy

Giving Thanks

It’s hard to believe that November is around the corner. And, like many of you, our family will join together to give thanks for all that is good in the world.

Faith, Family, Friends.

So much to be thankful for.

Please allow me to wish you a Happy Thanksgiving.

May you be blessed with love and peace.

“May You Live This Day

Compassionate of Heart,

Clear in Word,

Gracious in Awareness,

Courageous in Thought,

Generous in Love.”

From the poem “Matins” By John O’Donohue (2008)

 

 

 

 

 

A Slippery Slope Indeed – Reflections on Survivorship

A Slippery Slope Indeed

by Dan Dean

 

Dan & Amelia

At this year’s CancerCon in April—a national cancer conference for adolescents andyoung adults—I co-presented with Amelia Baffa and Dr. Jennifer Giesel a talk on the mental health challenges many cancer patients and survivors experience and the ways to treat them—TheSlippery Slope of Survivorship. Both Ameila and Jenn support the adolescent and young adult cancer population at University Hospitals with psychosocial care. Our presentation reminded me of a time early in my survivorship experience, two or three months after treatment ended in 2003.Several well-meaning friends suggested I see a therapist to help make sense of this intense, life-altering experience. In my family, therapy wasn’t necessarily stigmatized, but no one in my family used it before either, aside maybe from consulting our family priest. And so I didn’t really consider it as a tool, unless things got really bad.
I ended up working through all of challenges in survivorship without any kind of professional help. I read tons of books, tried different approaches to living in my new normal, and consulted with close friends and family about how to make sense of things. I did a lot of the heavy lifting in the three years after treatment ended and largely came out okay. But I was fortunate in that my biggest supporters—my mom and brother (and dog Lady)—did as much as they could to support my study in self-care and recovery. Close friends augmented their support and I leaned heavily upon them to get through.
Looking back, I realize that without them, I could have developed depression or PTSD or any number of ailments of the mind. Back then, I didn’t know the terms and what they meant, but I can see how my support systems’ unwavering commitment to my recovery more or less kept me on track and clear of more serious issues.
Not everyone is as lucky as I was. What I learned from Amelia and Jenn is how professional therapy, the way an individual processes cancer, and a support system all work together; my recovery leaned toward the latter two. For other people, that metric can be different; some many not have access to a professional or a support system, left on their own to figure things out.
Now that I am 14 years out from my cancer experience, I recommend the value of professional psychosocial support, even though my path was more solitary and self-guided. There are plenty of opportunities to take the baton a therapist hands off to you and wrestle with those challenges on your own.
The two therapies I wished I had that could have sped along parts of my recovery were 1) diaphragmic breathing and 2) using a thought log. Diaphragmic breathing is a great deep breathing technique that slows the mind down and calms a person’s physiology so they can actually do therapeutic work. Thought logs are a step-by-step way to break down recurrent, unhelpful thought patterns by challenging the assumptions behind them. They’re helpful not just for cancer patients, but anyone dealing with day-to-day life stress. (to download both tools, visit www.m-powerment.org/cancercon)
There’s no exact method a person can use to find their way from the end of treatment and into their new normal. The keys, in my opinion, to make it through are keeping on the path toward the new normal—even though it may take you down many side streets you don’t necessarily want to settle on—and not going at it alone.
I certainly tried many approaches and there were some I discarded early on and others that have stayed with me well beyond those initial weeks and months into survivorship. But as I engaged in an extended time of trial and error with all of those therapies, it was the constant support of my family and close friends that kept me on the path and into the life I enjoy today.

 

Dan Dean is a 13-year survivor of stage IV non-Hodgkin’s lymphoma. Recognizing that few resources exist geared specifically toward men affected by cancer, Dan founded M Powerment to bring men of all ages together to lead amazing, impactful lives after a cancer diagnosis. A lifelong Cleveland sports fan, Dan also plays basketball, kayaks, hikes, and likes to go trail running.

Dan is also a SGAYA Board Member.

The website for the therapies presented at CancerCon 2017 is www.m-powerment.org/cancercon

Dan’s professional sites: www.dan-dean.com and www.m-powerment.org

Lou G., Pat T., & Angie

NE Ohio Cancer Warriors and Friends

Here are some photos from this year’s #CANCERCON 2017 event. Many thanks to our donors who support the Steven G AYA Cancer Research Fund. This year you sent six cancer survivors to Stupid Cancer’s CANCERCON conference in Denver! FIGHT! CONQUER!! CURE!!!

Alex & Jennifer A.

Bryan, Kim & Steven

Amelia, Angie, & Jennifer

Childhood Cancer Researchers Receive Award from Steven G Fund!

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CAC2 CONFERENCE Speakers and Participants

CAC2 Pediatric Cancer Research Conference – 2016

“From Bench to Bedside and Beyond:

Uniting the childhood cancer community

in a collaborative forum to advance research for childhood cancers”

Cold Spring Harbor Laboratory, Long Island, NY

October 30 – November 2, 2016

The Steven G AYA Cancer Research Fund was honored to award $500 to the following scientists for their work in Childhood Cancer Research:

Angela Waanders (center) from Children's Hospital of Philadelphia. Research Title: Cavatica: empowering research with a pediatric genomic cloud.

Angela Waanders, M.D., M.P.H., Assistant Professor, NeuroOncology Program (in center) from Children’s Hospital of Philadelphia. Research Title: Cavatica: empowering research with a pediatric genomic cloud.

 

Sunitha Rangaraju,Ph.D Precision Medicine Liaison Global Medial & Diagnostic Affairs for IGNYTA. Research Title: Pediatric phas 1/1b dose-finding trial of entrectinib with expansion into patients with primary brain tumors, neuroblastoma, NTRK, ROS1, or ALK fusions.

Sunitha Rangaraju,Ph.D Precision Medicine Liaison Global Medial & Diagnostic Affairs for IGNYTA. Research Title: Pediatric phase 1/1b dose-finding trial of entrectinib with expansion into patients with primary brain tumors, neuroblastoma, NTRK, ROS1, or ALK fusions.

 

 

 

 

 

 

 

 

 

FIGHT! CONQUER! CURE!!!

CANCERCON 2016 – BY DAN DEAN

CancerCon is a set of two paradoxes:

the conference operates likes a living,

breathing pair of theater masks

and you talk more than normal,

but need fewer words to do so.

If you’re not familiar with it, CancerCon is a three-day cancer jam held in Denver, bringing together over 600 adolescent and young adult (AYA) fighters and survivors from around the country to attend seminars and network with those who share their same diagnosis. The hallways, breakout rooms and lobby buzz with the sounds of old friends catching up and new ones forming bonds that circumvent time and geography.

At times, the conference can feel overwhelming: connections are being made and rekindled, helpful information and stories are swapped between patients and survivors, attendees are dealing with aspects of their recovery for the first time, while also finding the community and resources to continue their healing. Emotions run high and deep.

Through every encounter, whether shared in joy or sadness, is a sense of relief. For the first time, many patients and survivors don’t have to give their 15-minute cancer back story. There’s not the urge or need to explain their journey that people on the outside don’t quite understand. Over time, cancer fighters and survivors become practiced storytellers, explaining gaps in employment and dating and taking outsiders on a CliffsNotes tour of their treatment and recovery.

In that sense, AYAs can feel alone, separated from their peer group and friends at home. When social dynamics change so starkly into the ascension of adulthood, throwing a cancer diagnosis in the mix can feel isolating and confusing. The same challenges that cause a person to feel alienated in one circle are embraced and accepted at CancerCon. No longer is the cancer preamble needed.

Instead, patients and survivors jump into deep conversations right away, much in the same way two old friends catch up instantaneously. About midway through a conversation you realize how amazing it is to form a bond with someone you met only 20 minutes ago who lives seven states away.

There’s no way to neatly encapsulate the range of emotions at CancerCon. It’s unique to both laugh and cry about the same experience. When you say the three words, “I had cancer,” everyone gets you. And those things are worth the trip to Denver.

Dan Dean

May 25th, 2016

Dan is an actor, writer, advocate, survivor and we are lucky to have him as a board member.

You can check out his blog at: http://www.cancer-youngadult.org

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LET’S SAVE A LIFE – BMT DRIVE APRIL 17TH

Hello friends,

Most of you are familiar with Steve’s journey through cancer and the fact that he had a LIFE SAVING BONE MARROW TRANSPLANT. And many of you did register with the Be The Match Foundation in hopes of helping Steven.

BUT SOME OF YOU DIDN’T….PROBABLY BECAUSE YOU WERE TOO YOUNG or too busy…

SO IF YOU ARE 18 – 44 YEARS OLD… HERE IS YOUR CHANCE TO SAVE A LIFE!!!

Our friend Joanne Filina was first diagnosed at 35 years old with Leukemia. She went into remission but it came back a second time. She is in remission again. BUT her doctors are telling her that it might come back again…and soon.

PRETTY FRIGHTENING DON’T YOU THINK?

So here is your chance to help her and others like Joanne.

JOIN THE REGISTRY.

IF YOU ARE A MATCH YOU WILL BE NOTIFIED BY TELEPHONE.

IF YOU ARE CONTACTED…PLEASE SAY YES TO BEING FURTHER TESTED.

AND THEN IF YOU ARE STILL A MATCH YOU JUST MIGHT GET THE CHANCE TO SAVE A LIFE.

YOU WILL BE INCONVENIENCED FOR A COUPLE OF DAYS. AND THAT’S IT!!!

IF YOU NEED MORE CONVINCING TO HELP OUT…THEN HERE IS A QUOTE FROM STEVEN’S DONOR:

“I am honored to have an opportunity to help save a life. When I was first notified that I was a match I didn’t tell anyone until it was confirmed I am a match for someone in need. 

So I mentioned it to my wife…she didn’t hesitate for a moment. I am a parent just like you with three boys… and I couldn’t imagine someone turning down a boy with a full life in front of him….Please know this, you, your husband and your son Steven do not owe me a single thing no even a debt of gratitude, what I did was for myself, and the act in itself was self gratifying. I think you all are great people, and if anything, it is I who owes you and not the other way around. Please keep doing what you are doing in helping other cancer patients and may God help and Bless you. 

With warm regards,  A…..” [Note from Angie: I am maintaining our donor’s anonymity because I did not ask him if I could share this message on the website.]

SO JOIN US 

SUNDAY, APRIL 17TH, 2016 – NOON – 4:00 PM

ST. DEMETRIOS CULTURAL CENTER – FELLOWSHIP ROOM

22909 CENTER RIDGE ROAD

ROCKY RIVER, OHIO 44116

THERE WILL BE A RAFFLE TO RAISE FUNDS FOR “BE THE MATCH”

REFRESHMENTS WILL ALSO BE AVAILABLE.

QUESTIONS:

CONTACT ANGIE: Angie@fightconquercure.com

OR TONYA DAVIS

tdavis2@nmdp.org

for more information

or to make a donation visit:

http:www.bethematchfoundation.org/goto/jojofilina

or to download more information

Joanne Filina Event Flier (1)2016 FAQ and Responses

 

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Wishing you a Joyous Holiday With Family and Friends

Dear Family and Friends

YOU ARE VERY IMPORTANT!!! WITHOUT YOU WE WOULDN’T EXIST!!!

Through your support the Steven G AYA Cancer Research Fund has reached out and served the pediatric, adolescent and young adult (PAYA) cancer community. We have funded clinicians and researchers in medicine and the social sciences to find better ways to treat and serve PAYA Cancer Patients and Survivors. 

Your financial support sent YA cancer patients to the uplifting and empowering annual Stupid Cancer Conference where young adults interact and learn what it means to be a cancer survivor between the ages of 21-39 years.

Our Wellness Packages have been a hit at Rainbow Babies and Children Hospital, Seidman Cancer Hospital and the Cleveland Clinic. Each newly diagnosed AYA Cancer Patient receives a large canvas bag of materials that encourage and support positive mental and physical health behaviors. Let’s face it these young people need as much support and encouragement as possible!

Our foundation is small but mighty!

THANKS TO YOU!!

We wish you and your families a Merry Christmas, Happy Hanukkah, Joyous Kwanzaa, and a Blessed New Year.Christmas-Candle-and-Rose

Looking forward to seeing you on January 23rd, 2016.

God Bless.

Angie and Harry

EVIDENCED BASED CARE FOR AYA’S – AMELIA BAFFA

CONGRATULATIONS TO AMELIA BAFFA, CLINICAL ONCOLOGY NURSE, AYA PATIENT NAVIGATOR AT RAINBOW, BABIES & CHIMG_5577ILDRENS’ HOSPITAL AND SEIDMAN CANCER CENTER FOR HER CONTINUED EFFORTS TO IMPROVE CARE TO ADOLESCENTS AND YOUNG ADULT CANCER PATIENTS,

AMELIA RESEARCH POSTER WAS PRESENTED AT THE ACADEMY OF ONCOLOGY NURSE
NAVIGATOR CONFERENCE IN ATLANTA, GEORGIA LAST WEEK.

OVER 700 ONCOLOGY NURSES ATTENDED THE CONFERENCE, AND MOST OF THEM WERE WORKING VERY HARD TO RAISE AWARENESS OF THE NEEDS OF AYA CANCER PATIENTS DURING AND AFTER TREATMENTS.

THANK YOU AMELIA FOR YOUR DEDICATED WORK!!!

FIGHT! CONQUER! CURE!!!

GO FOR THE GOLD – CHILDHOOD CANCER AWARENESS MONTH

FRIENDS

PLEASE REMEMBER THAT SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH. 

PLEASE REMEMBER THAT CHILDHOOD CANCER SURVIVORS BECOME ADOLESCENTS AND YOUNG ADULTS WITH SECONDARY ILLNESSES 

PLEASE REMEMBER THAT EACH DAY PARENTS ARE MOURNING THE LOSS OF THEIR CHILD AS A RESULT OF CANCER.

PLEASE REMEMBER THAT PEDIATRIC CANCER IS THE #1 DISEASE RELATED KILLER OF KIDS IN THE UNITED STATES.

KNOW THAT THE NIH (NATIONAL INSTITUTE OF HEALTH – WHERE YOUR TAX DOLLARS GO) GETS $30 BILLION FOR RESEARCH ANNUALLY, YET CHILDHOOD CANCER RESEARCH GETS LESS THAN $200 MILLION. THE DEADLIEST CHILDHOOD CANCERS GET LITTLE OR NO FUNDING.

IT’S NOT A MATTER OF MORE MONEY, IT’S A MATTER OF PRIORITIES.ribbon

 

 

 

 

WE MUST MAKE CHILDHOOD CANCER RESEARCH A NATIONAL PRIORITY AND GIVE KIDS PEDIATRIC CURES, TREATMENTS, PROTOCOLS AND HOPE!!!

fight! conquer! CURE!!!

EMILY’S RAINBOW RUN and Family Walk – April 19th

YOU ARE INVITED

TO

EMILY’S RAINBOW RUN and Family Walk

In honor of the Memory of our friend Emily Lewis 

The event will take place

Sunday, April 19th, 2015

Westlake High School

Westlake, Ohio 44145

4 MILE TIME RACE starts at 8 am

2 MILE RUN/WALK starts at 8:05 am

Kids Run starts approximately at 9:15 am

To register and for more information visit:

www.emilysrainbowfund.org

or

info@emilysrainbowfund.org

or download this flyer and registration form 2015_ERR_Registration

EmilyPhoto Emily8

Cleveland: what a great place!

Hi folks,

As I sit here watching Neptune dump another 6 inches of snow, I remember a time when Steve was in the hospital during a mega February snow storm. Harry was supposed to stay the night and I was going home…however, the weather was so incredibly awful, I just decided to remain safe in Steve’s hospital room.  Harry and I shared a single bed next to Steven… It was a good decision as the weather was wicked!

Safety in the hospital…staying over night in the hospital…common phrases we hear everyday when we are impacted by a serious illness or a planned or unplanned surgery.

We are fortunate to have that “safe place” here in Cleveland.  We our blessed to have University Hospitals and the Cleveland Clinic.  It’s nice to be able to choose based on one’s needs.

Interestingly folks outside of Cleveland, particularly our friends on the East and West Coasts…aren’t aware of the medical facilities available to us Clevelanders’. I recall attending a conference where out of towners’ were AMAZED at the medical facilities and AYA CANCER SERVICES  …here in Cleveland…Wow!

So this is my plug for my hometown.

And also to say…thanks.

Last but not least…we continue to deliver BE CALM STAY STRONG PACKAGES for YA Cancer Patients. Feel free to email me at angie@fightconquercure.com to learn how you can support this important service.

Below you will see a photo of Erin Gibson, Pediatric Oncology Social Worker at the Cleveland Clinic’s Children’s Hospital, and me…with ten BE CALM STAY STRONG PACKAGES  for Ya Cancer patients and two bags of apples and two bags of oranges for their Ronald MacDonald Family Room. Anyone who has had an extended stay in a children’s hospital has likely visited the Ronald MacDonald Family Room….a great refuge.

 

clevel clinic photo