Survivorship

At the beginning of treatment, many parents are told:  “Your child has to survive to experience side effects.” And with so many surviving today many families are finding that while grateful for every day their child is alive, lifelong side effects are proving to be more challenging than initially thought. According to the National Cancer Institute, “survivorship focuses on the health and life of a person with cancer post treatment until the end of life. It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life.” For most of our survivors, who actually deserve classification of “surviving” each day they are in treatment as well as post treatment, they may experience challenges in each of these areas at one point or another during their lifetime. Survivors deserve to do more than survive treatment, we must aspire to a much higher goal than simply preventing death. Many

survivors continue to struggle, surviving day-to-day challenges because of lifelong side effects that may continue to get worse over time. PREP4Gold commits to increasing support and services for survivors and families, and providing a higher quality of life.

 

Saturday Survivorship Spotlight

Monthly spotlights to celebrate the lives of our survivors

SATURDAY SURVIVOR SPOTLIGHT

September 25 - Claire Nowicki

AGE:  3 yrs old

DIAGNOSIS: Neuroblastoma, High Risk

DIAGNOSIS DATE: June 11, 2020, Relapsed Feb 4, 2021

DATE OF NED/CURE: Oct 20, 2020, August 7, 2021

Claire likes selling ice cream, having tea parties, and dancing!

"I want to go see the doctors!"

-Claire; booted from playing with mommy!


"Thank you for getting it (a large tumor) out of my nose!"

-Claire, who returned to NED after relapse. She had proton therapy that worked getting a huge tumor out of her maxillary sinus.

SATURDAY SURVIVOR SPOTLIGHT

October - Carolyn Koncal Breinich

AGE:  41 yrs old

DIAGNOSIS:  Leukemia

DIAGNOSIS DATE:  January 25,1994

DATE OF NED/CURE:  April 15,1996

During treatment, I advocated for myself with my voice, asking questions about every aspect of my treatment. Years later, I lost my voice when depression set in. In 2010, I discovered ballroom dancing and quickly fell in love with it. Dancing was a way to forget my thoughts and be free. I can close my eyes, feel the music and just follow my partner's lead. Dancing became a way for me to express myself without my voice. Ballroom Dancing led to me loving life again after years of depression. Since then, I have found my voice again, this time advocating for childhood cancer survivors.

 

I recently turned my voice into the written word and wrote Faith, Hope and Cancer: The Journey of a Childhood Cancer Survivor. I wanted to share my story to help other survivors not feel so alone as they go through treatment and learn how to live again once treatment is over. I believe I survived for a reason, and I am using my second chance to make the world a better place for future cancer patients and remind everyone to Live Life, Love Life, and Cherish Every Moment.

241094027_10224947504209175_1211188697276924272_n.jpg

SATURDAY SURVIVOR SPOTLIGHT

September 18 - Mariah Forster Olson

AGE:  41 yrs old

DIAGNOSIS: Neuroblastoma

DIAGNOSIS DATE: June 6, 1980

DATE OF NED/CURE: 1987

"It has never been, and never will be, easy work!  But the road that
is built in hope is more pleasant to the traveler than the road built
in despair, even though they both lead to the same destination."

- Marion Zimmer Bradley

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."

- Kahlil Gibran  

 

In addition to my childhood cancer nonprofit work, I am an oboist and have played for nearly 30 years. I play in a variety of community ensembles as the principal oboist, and I also give oboe lessons. Additionally, I love to write and I am writing a book about my cancer story, all of my late effects, and perspectives on life and how I have made it through the difficult moments. The book is tentatively titled, "Hope Over Despair."

MariahOlson_edited.jpg

SATURDAY SURVIVOR SPOTLIGHT

September 11 -  Nicole Pitsnogle

AGE:  23 yrs old

DIAGNOSIS: Neuroblastoma, High Risk Stage IV

DIAGNOSIS DATE: August, 1999

DATE OF NED/CURE: August, 2000

"Heavy is the crown and yet she wears it as if it were a feather. There is strength in her heart, determination in her eyes and the will to survive resides within her soul. She is you. A warrior, a champion, a fighter, a queen."

 

Every picture I've seen of myself in the hospital I have a big smile on my face. I have learned that even through cancer and everything else, I smile!

SATURDAY SURVIVOR SPOTLIGHT

September 4 - Joshua Hofmeister

AGE:  24 yrs old

DIAGNOSIS: Neuroblastoma Stage III, nmyc amplified, unfavorable histology, treated as a Stage IV

DIAGNOSIS DATE: January 8, 1999

DATE OF NED/CURE: August, 1999

I am currently working on two albums -- one with my band, and one with a band I play with -- and building a portfolio for music production. Yes, the profound, chemo-induced hearing loss is an obstacle when compared with someone with all five senses. You have to get over not being able to hear. It motivated me to be "innovative" every day to support the four senses I have. I rely heavily on vision and feeling. It's not really the "heightened or elevated sense" like people say. Instead, it is more like using a screwdriver & wrench to do what other people do with a hammer. It may not be the same, but you can accomplish the job. You get really good at using other tools. In the end, most don't know that your new roof was completed with a screwdriver or wrench. Further most people really don't care, as long as it keeps you dry. When I play with my band, or mix/master music, most people can't tell I have lost my hearing. Because I don't let it get in the way of the music.

JJH.jpg
nancybrood10straggler1500.jpg

PREP4Survivorship

For children who have experienced chemo-induced hearing loss, the periodical cicada who emerge every 17 years can cause additional damage.