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Tess Blasko Talks About CancerCon 2019

Champagne, Tess, Hannah and Sam

A Letter of Thanks from Tess Blasko

I’d first like to start this letter to say how thankful I am to be able to be apart of the Elephants and Tea herd and how thankful I am to have been able to attend CancerCon [courtesy of the SGAYA Foundation] in Denver this year. I was surrounded by a group of bad asses who have been affected by the demon we all know, Cancer. It truly was a pleasure to travel with you all and to experience this amazing convention once again. I will forever be grateful for everything you guys have done not only for me, but also for many other patients/survivors. Keep doing great things!

 

 

 

 

 

A little explanation on CancerCon-

Have you ever felt like you were drowning and trying to come up for breaths of air in a panic of what is happening? Imagine that and even be surrounded by people watching you while you are sinking and just yelling out encouraging words in hope to help you stop drowning. They do not understand the struggle and how hard it is to catch your breath when you suffocating under the pressure of the “water”. I feel this way, yet I am not drowning… I am just living the life of a cancer survivor. I am trying to find my place and trying to get a grasp on this whole life after cancer that I thought was going to be such a simple task. I mean I lived a life without cancer before right? So it should be no problem getting back to that life, correct? Wrong… very wrong.  “You’re healthy” “you’re alive” “don’t dwell on the past”.  It is easy for those around you to express those words if you are struggling, but they truly just do not get it. I am healthy, but I am constantly feeling around my body to find something wrong. I am alive, but I was so close to death. I dwell on the past because it was traumatizing and the future also scares the crap out of me. I am drowning. CancerCon becomes the hand that pulls me up while my lungs are filling up with water and I am fighting to breathe. Before attending CancerCon I have never felt more alive and comfortable in my entire life. Being at CancerCon I am surrounded by badass individuals, like myself, who understand all the emotions that I am feeling. This convention puts into perspective that, if you had/have cancer, you truly are not alone and you have an army of individuals in your corner. CancerCon will forever impact me in the most positive ways and having the opportunity to attend is truly a blessing. 

Washington DC = WOW! The Raulerson’s Advocate For Childhood Cancer

Meet the Raulerson’s!

Thanks to our donors Micheal, Tammy and Tacey were able to attend the Alliance for Childhood Cancer’s Advocacy Day this past April!

It is people like the Raulerson’s who continue to share the responsibility of making sure our legislators know about the serious impact childhood cancer has on youngsters and their families.

It goes without saying that good solid Research and long term Survivorship Programs are needed…

And now Tammy (mom) Raulerson:

Washington, D.C.=WOW!

As usual, our trip began with its our normal hiccups and bumps.  Also, as usual, God had it all worked out.

Our first flight got cancelled and we were rescheduled to fly out of Houston in the evening.  That meant us arriving in D.C. very late at night.  In fact, we were so late the hotel shuttle had stopped running.

We left Houston in 80° weather and arrived in DC to 47° weather!  Thankfully, I had packed our jackets and travel blankets in our carryon bags!

As most of you know, our family rarely goes anywhere without making new friends.  Having been a teacher of world geography, I am curious about learning more about people when I hear accents.  Of our 5 cab rides while in DC, we learned more about Afghanistan, Ethiopia, Laos and Sierra Leone.  It was fun to make conversation with the drivers.

Even though we got very little sleep due to such a late arrival, our Tuesday training was great!  It was hard to settle down and sleep because we knew 2 of our very best friends were in the room next to us.  They came to represent South Carolina.  It had been 2 years since we had seen each other, so we were so excited to be reunited Tuesday morning!!

Not only did we meet important leaders in childhood cancer awareness and research, we also heard from vital leaders in health care organizations.  We especially enjoyed getting to know so many from other states and from Texas!  Not that I am biased or anything, but our contingency from Texas was exceptional!

One of the ladies and I got to talking about where we were from.  She grew up in Dallas and still lives there.  However, in our discussion we realized she was born in MY hometown!  Some of her family still lives there.  As we were talking, I realized I know several members of her family.  What a small world!

One of the members of our team was a 12-year-old and his dad from Houston.  As we talked, he and Tacey realized they had the same oncologist and had several common friends.  Another member was a senior biology student at A&M.  We also had friends in common with him.  Again, it felt like a small world.

Training was so informative, interesting and important.  We were updated on all the imperative points and notes we needed to share with the legislators.

After traveling and getting to the hotel in the early morning hours, the day began to be a little long and overwhelming for Tacey during lunch.  She needed a break and went up to the room to rest.  Just as I was about to text her to come back to the training, she sent me a text letting me know she was headed back down.

This may not seem like much to a lot of you, but to me it was huge.  In a very unfamiliar environment, a large city full of strangers, etc., Tacey took the initiative to leave the hotel room, find the elevator and return to training without us assisting her.  She is very independent and self-reliant, but being in an environment like this can be unsettling to most! [Editor’s Note: Tacey has a visual impairment.]

After a long day of training, we and other families were treated to dinner by St. Baldrick’s Foundation.  Tacey has been an ambassador/honored child for St. Baldrick’s since 2007.  It is an amazing foundation.

Wednesday was our big day on Capitol Hill.  It started early with the bus ride to the Hill and a group photo.  We took a few minutes to take small group photos, too.  Then, we took off to our first meeting.

While waiting to get through security at one of the building of House offices, we saw Secret Service rush to set up a perimeter as Secretary of State Pompeo exited a car and entered the building.  Later in the day, we were asked to step aside in a hallway of another House building.  As we moved to the side of the hallway, we saw security escorting the Joint Chiefs of Staff.  Yes, these things were surreal.  They also happen so quickly you don’t think to grab your phone to snap photos!

Our day was long.  We walked over 5 miles between House and Senate buildings.  At one point, Tacey walked barefoot from one of the Senate buildings to one of the House buildings.  We were rushing to get to our next meeting, so once again I didn’t get a photo!  LOL

Thankfully, we had a lobbyist from DC helping us get from one place to another.  At one point, I think we took some short-cuts in the tunnels under the House buildings that weren’t necessarily open to the public!  LOL

We met with legislative leaders from 5 of our Texas congressmen’s offices.  Everyone we met was very gracious, listened and gave us great hope for the future of childhood cancer research.

Hearing Tacey and the other 2 childhood cancer survivors in our group share their stories with these critical people was so moving for all of us, but especially for those we were meeting.  We also had 2 moms who shared the stories of the passing of their children from childhood cancer and its complications.  One particular story brought my emotions to the surface as I realized we had been in the hospital and on the cancer floor the day the young girl passed.  I vividly remember praying for the family at the time!

Being part of this type of advocacy and awareness was energizing, inspiring and empowering!  It was an incredible experience we will never forget!  It was also something we want to continue!

We wrapped up a successful day with pizza in the hotel room with our friends.  It is a good thing it was in the room closest to the elevators and our room on the other side since we laughed and talked and laughed until after midnight!

We had plans to visit the Holocaust Museum and the National Zoo the next day, but Tacey’s health decided to give us a scare in the middle of the night.  Everything turned out to be okay, but our plans had to be postponed until the next time we get to travel to DC.

It is hard to put into words the true effect of the trip on our family.  It was surreal, empowering, encouraging, inspiring and so much more.  We are so thankful we made the trip and participated in something so monumental!

Without the very generous help from family, friends and cancer organizations this trip would not have been possible.  Itis only because of so many people’s help it happened.

Just to remind everyone of God’s hand in everything… We had some emergency issues come up the week before we left.  Those emergencies used all of our savings and what we had set aside in case our expenses were over what we estimated.  We had a debit card with our money for food and other incidentals.  We returned home with $0.61 on that card!  As always, God was in control!

Being Thankful This Holiday Season

IT REALLY DOESN’T MATTER WHERE YOU LIVE

TIS THE SEASON

TIS THE SEASON TO BE THANKFUL

 TO BE MINDFUL

 TO BE GRATEFUL

…AND TO REMEMBER THOSE LOVED ONES

AND FRIENDS GONE FROM US.

PEACE TO ALL OF YOU!

MERRY CHRISTMAS

HAPPY HANUKKAH

JOYOUS KWANZAA

BLESSINGS TO YOU AND YOURS THIS HOLIDAY SEASON!

MARK YOUR CALENDARS – AND HELP US -TAKE A BITE OUT OF CANCER


JOIN US ON

SATURDAY

JANUARY 26, 2019

AS WE

TAKE A BITE OUT OF CANCER!

7:00 – 11:30 pm

St. Demetrios Cultural Center

22909 Center Ridge Road

Rocky River, Ohio 44116

TICKETS ARE $45

TO PURCHASE TICKETS OR MAKE A DONATION

https://sgayafund2019.eventbrite.com/

THIS YEAR WE WILL HAVE A PHOTO BOOTH!!! SGAYA_10thAnnual_DonorForm_Editable

and food and beverages, music, raffles, auctions, fun!

ALL PROCEEDS GO TO OUR 

RESEARCH, PATIENT EDUCATION, SOCIAL SUPPORT AND WELLNESS PROGRAMS.

 

AYA? What does THAT mean?

AYA?


YOU MAY BE WONDERING WHY ON EARTH I AM ASKING SUCH A QUESTION.

WHAT IS AYA?

IS THE WORD PRONOUNCED “AHYA”? …NOPE.

AYA MEANS FOR ADOLESCENT AND YOUNG ADULT. 

AYA REPRESENTS A POPULATION OF INDIVIDUALS FROM 15 YRS TO 40 YRS OLD.

AYA CANCER REPRESENTS A POPULATION OF INDIVIDUALS STRICKEN WITH A TYPE OF CANCER THAT IS OFTEN VERY AGGRESSIVE, LIFE THREATENING AND LIFE ALTERING.

AYA CANCER REPRESENTS 70,000 YOUNG PEOPLE THAT ARE DIAGNOSED EVERY YEAR HERE IN THE USA! 

AYA CANCER OFTEN MEANS THAT THESE YOUNG PEOPLE GET THE RAREST CANCERS AND THE MOST DIFFICULT TO TREAT AND CURE.

AYA CANCER SURVIVORS OFTEN ARE AFFLICTED WITH SECONDARY EFFECTS THAT WILL ALTER THE COURSE OF THEIR LIFE AND PRODUCTIVITY IN OUR SOCIETY.

WHAT CAN YOU DO ABOUT IT?

HELP US GET THE WORD OUT!

SUPPORT OUR FOUNDATION!

AS WE REACH OUT INTO THE COMMUNITY

AND HELP OUR YOUNG WARRIORS THROUGH

EDUCATION, ADVOCACY AND RESEARCH!

-REMEMBER-

WE WILL NOT REST UNTIL THERE IS A CURE!

FIGHT!

CONQUER!

CURE!!!

 

PS.

THIS WEEK IS AYA CANCER AWARENESS WEEK.

#FIGHTCONQUERCURE

 

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

JOIN IN THE MARCH MADNESS FUN and HELP RAISE MONEY FOR CHILDHOOD CANCER

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It’s THAT time of year!

You are personally invited to play a bracket supporting

Childhood Cancer Research!

This year The Steven G AYA Cancer Research Fund and Win It Together have joined forces…

because let’s face it

WE ARE STRONGER TOGETHER!!!

Put your college hoop skills to the test by playing a bracket (or two) with us. $10 to play (per bracket). Bracket picks will start Selection Sunday (March 12th) and need to be in by the start of the tournament games (March 14th) by noon.

Grand Prize is $300

Second Prize is $150

Third Prize is $50

GET NOTIFIED WHEN BRACKETS ARE OPEN BY

Visiting  winittogether.org

So Sign Up and Play!

You can pay online, or if you prefer, mail your check made payable to the Steven G AYA Cancer Research Fund and mail to 1269 Overlook Road, Lakewood, Ohio 44107. The site will go live on the evening of SELECTION SUNDAY when you’ll be able to make your bracket selections.

As always, we appreciate your continued support as we

FIGHT!

CONQUER!!

CURE!!!

CANCER

 

logo-for-sgaya-2016

 

MOONSHOT 2017: TAKE A BITE OUT OF CANCER

HELLO FOLKS,

JUST A FRIENDLY REMINDER

THAT OUR

TAKE A BITE OUT OF CANCER FUNDRAISER

IS LESS

THAN

TWO WEEKS AWAY!!!

SO VISIT OUR WEBSITE  (AND CLICK ON EVENTS) TO ORDER TO YOUR TICKETS ON-LINE!

HERE ARE SOME OF THE ITEMS UP FOR SILENT AUCTION

RESORT VACATIONS

GOLF OUTINGS

PRIME INDIAN TICKETS

PRIME CAVS TICKETS

CLEVELAND PLAY HOUSE TICKETS

CLEVELAND ORCHESTRA TICKETS

TITO’S VODKA GIFT BASKET

JEWLERY

CHINCHILLA SCARF

ART

LADIES CLOTHING & ACCESSORIES

CAVS MEMORABILIA

ROMANTIC DINNERS

BOWLING PARTIES

BASKETS GALORE!

SOMETHING FOR EVERYONE!

 

join-us-copy

REMEMBER

WE WILL NOT REST UNTIL THERE IS A CURE

FIGHT CONQUER CURE!!!

Childhood Cancer Researchers Receive Award from Steven G Fund!

cac2-research-conference

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!!!