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No One is Too Young

By August 30, 2021No Comments

Desolina was a typical 4-year-old child, mostly sweet with those few epic tantrums. As she approached 5, the tantrums worsened and we often joked what our household would be like during the teen years. She had developed an urge to urinate that seemed ridiculous to us and usually at the most inconvenient times. She had stopped eating as much and seemed to always be full after a few bites. Being our second child, we assumed it was the typical phases of childhood that would eventually pass.

 

While we were on vacation in August 2015, she developed subtle signs of early puberty. “Mom-gut” was telling me that something wasn’t quite right and so the appointments began. One day she developed excruciating abdominal pain and was unable to walk, but by the time we left the doctor, she was jumping from the table and showing them her light-up shoes. The abdominal x-ray was normal, and a bone age x-ray was showing something was hormonally off. Everything was still pointing to early-onset of puberty, which is more common than an ovarian tumor. As we waited for the endocrinology appointment, her pubertal signs advanced, which led quickly to a lot more bloodwork and pelvic ultrasound which revealed our worst fear, a 14-centimeter ovarian mass.

 

Surgery was scheduled for November 30th and all teams were extremely cautious about keeping that tumor intact. Pathology confirmed a stage 1A juvenile granulosa cell tumor (JGCT), we had gotten all tumor markers drawn before surgery and we had all the tools to effectively monitor for any recurrence down the road. The surgery went as planned and she is now 3 years cancer free. We very quickly realized the benefits of early detection!

 

As parents, we struggled with how to teach her about what was happening to her body and why this was such a big deal. Not many 5-year-old children have any idea what an ovary is, let alone what the signs of ovarian cancer are and what to watch out for. We knew that we would need to stay connected to a community who would foster that education and a community who could support her and us if she should ever have a recurrence. That is when we discovered the NOCC.

 

The first year that we walked in the local Run/Walk, I had to ask for special permission to get her a Survivor shirt in a kid’s size. I knew then that we had connected to the right team. The overwhelming support and love that the organizers and committee members showed for our daughter was unbelievable. After the first walk, we knew that we would be getting involved with the NOCC as an entire family.

 

Desolina now serves as the chair for the Kid’s Tent committee, Katie (Mom) is serving on the Run/Walk Leadership committee, Ron (Dad) dressed as Tealie O’Hare for the mascot debut at the 2018 Together in TEAL® Pittsburgh Run/Walk, and her siblings, Preston and Adalyn, show up wearing teal in their support at all the events. Desolina enjoys going to local support events to see all her friends. She has made friends who have since passed and has incorporated their memories into the walk events.

 

She is learning how to talk about her ovarian cancer story in ways that give hope to others and provide education to those who may need the voice of a child to remind them to pay attention to their own bodies. She wants everyone affected by ovarian cancer to have a good support system and can’t think of a better way to do it than to let them know about the National Ovarian Cancer Coalition.

Desolina Postreich

Desolina was diagnosed with JGCT stage 1a ovarian cancer in 2015 when she had just turned 5 years old!  We are so thankful that it was caught as early as it could be.  We learned very quickly learned the importance of early detection, which is not common with the silence of ovarian cancer.

The NOCC has supported us with every step of her journey.  We are lucky to have met wonderful people along the way. We especially miss our friend, and co-captain, Caryn Calarie who passed away in 2020 from ovarian cancer.  We are also very lucky to have our newest survivor friend, Meredith Mitstifer, who is a 19-year survivor and serves on the Board of Directors for the NOCC.  We were lucky enough to meet her while we were vacationing in Utah this summer, so we really are Everywhere as One this year!

 

To learn more about Desolina, visit her teams Together in TEAL  –  Everywhere as ONE page today

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Signs and Symptoms

Ovarian cancer signs and symptoms include:

  • Feeling the need to urinate urgently or often
  • Trouble eating or feeling full quickly
  • Pelvic or abdominal pain
  • Bloating
  • Back pain
  • Upset stomach or heartburn
  • Fatigue
  • Constipation or menstrual changes
  • Pain during sex

National Ovarian Cancer Coalition

30 Years of Courage

1991   

NOCC begins as a grassroots organization founded by advocates and survivors in Boca Raton, Florida

 1995   

NOCC incorporates as the country’s first national organization providing awareness and education about ovarian cancer.

1996   

The first national ovarian cancer information hotline is established (1-888-OVARIAN), now averaging 10,000 calls each year.

1998   

NOCC proclaims a week in September “National Ovarian Cancer Week,” with a declaration from President Clinton. “Walk for a Whisper” 5K Walk/Run is initiated.

2000   

NOCC and the ovarian community proclaim September as “National Ovarian Cancer Awareness Month.”

2002

The organization produces television PSA about early detection and distributes to 30 states.

2003

Ovarian.org received the Oncolink.com Award from OncoLink, the first online cancer resource founded by University of Pennsylvania cancer specialists.

NOCC receives the National Points of Light award in celebration of the success and impact volunteers have made in their communities.

2004

NOCC launches “Body Image/Body Essence” art exhibit by sculptor John Magnan as a tribute to his wife’s journey with ovarian cancer.

2006

NOCC launches the “Break the Silence” national education campaign.

2007

The “Break the Silence” campaign reaches 100M impressions.

NOCC helps launch the first consensus on ovarian cancer symptoms.

2008

NOCC moves its principal place of operation and state of incorporation/registration from Boca Raton, Florida to Dallas, Texas.

NOCC advocates help to double Department of Defense funding for ovarian cancer research to $20M per year.

2009

“Newly Diagnosed Patient Kit” is launched. DVD resource is made available in Spanish and Mandarin; 450,000+ pieces of literature are distributed nationwide.

2010

The Faces of Hope® program and term “Run/Walk to Break the Silence on Ovarian Cancer” are initiated. 

Annual fundraising events are branded “Run/Walk to Break the Silence on Ovarian Cancer®.”

2011

NOCC partners with The Dr. Oz Show to create his Break the Silence on Ovarian Cancer® campaign.

Over 1200 newly diagnosed women receive NOCC’s TEAL PACKET®

The “Ann Schreiber Ovarian Cancer Research Training Program of Excellence: A study by Dr. Ruth Perets” is supported by NOCC with a $50,000 contribution.

2012

NOCC supports quality of life research with the GOG 0225, LIvES Study, which is ongoing and conducted by the University of Arizona Cancer Center.

2013

More than 4,000 Faces of Hope TEAL totes are distributed.

2014

More than 575,000 pieces of education and awareness literature are distributed nationally.

NOCC affirms its commitment to research with the newest  initiative, collaborating with Stand Up to Cancer, Ovarian Cancer National Alliance, and Ovarian Cancer Research Fund to support the “Ovarian Cancer Dream Team.”

NOCC is featured in the highly coveted showcase window at 10 Rockefeller Plaza in midtown Manhattan.

2016

NOCC reaches its milestone 25th anniversary.

NOCC becomes an official charity partner for the New York Marathon and launches its first platform for endurance enthusiasts across the U.S - Team Teal®.

2017

Rejuvenate, the first event of its kind, is introduced by NOCC for survivors as a retreat experience centered around the mind, body and spirit; it later expands to a national series.

Not Knowing is Killing Us is launched as a hard-hitting national awareness campaign. 

2018  

NOCC's signature Run/Walk Series is rebranded and Together in Teal® Ending Ovarian Cancer is brought to life in communities across the nation.  

2019

Team Teal®, NOCC's endurance platform, expands internationally with participants in Greece and Canada.  

Together in Teal® Ending Ovarian Cancer is hosted at New York City's Intrepid Sea, Air & Space Museum, a national historic landmark.

2020

In response to the pandemic, NOCC introduces programming offering relief to women and their caregivers including home meal delivery, Comfort for the Soul, and online professional counseling through Comfort the Mind.  

Teal Hearts Network, a series of regional survivor support groups, commences in a virtual setting.

Together in Teal(R) hosts its first virtual experience, No Boundaries, and unites participants in 50 states and 9 countries.  

Stages of Ovarian Cancer

Stage 1

The cancer is confined to the ovary or fallopian tube

1A - The cancer is confined to one ovary only

1B - The cancer is found on both ovaries

1C - One or both ovaries are found with cancer cells spilling out from the ovaries

1C1 - Accidental rupture of the capsule by the surgeon during surgery

1C2 - Rupture of the capsule occurred before surgery

1C3 - Cancer cells are found in the fluid of the pelvis/abdomen

Stage 2

Growth of the cancer involves one or both ovaries with pelvic extension

2A - Extension of cancer to fallopian tubes or uterus

2B - Extension of cancer to other pelvic organs

Stage 3

Growth of the cancer involves one or both ovaries, and the cancer has spread beyond the pelvis

3A - Microscopic cancer cells found in upper abdomen or lymph nodes

3B - Visible tumor found in upper abdomen less than 2cm in size

3C - Visible tumor found in upper abdomen greater than 2cm in size, including disease on the surface of liver or spleen

Stage 4

The cancer growth is widely spread throughout the body

4A - Cancer is found in the fluid around lung

4B - Cancer is found inside the lungs, liver or spleen

National Ovarian Cancer Coalition

Stages of Ovarian Cancer

Before ovarian cancer - healthy ovaries

Stage 1 - Cancer is confined to one or both ovaries

Stage 2 - Cancer spreads within the pelvic region

Stage 3 - Average stage of diagnoses is stage 3C; cancer spreads to other body parts within the abdomen

Stage 4 - Cancer spreads beyond the abdomen to other body parts

 

National Ovarian Cancer Coalition