Northern Nevada Children's Cancer Foundation
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Fall 2019 Newsletter
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Fall 2019 Newsletter

Know the Gold Campaign Kick-Off

Awareness Wreath for Know the Gold

Our goal this year is larger than ever – and there’s a good reason for it. Although researchers are developing new and safer therapies for children, the treatments are expensive and insurance costs are rising. As these costs increase for children, we are expanding our programs to provide more financial and emotional support to meet the needs of northern Nevada families.

This year, we aim to raise $400,000 during our Know the Gold Campaign to continue the expansion of our programs. The William N. Pennington Foundation has generously agreed to match each donation to the campaign dollar-for-dollar, up to $400,000, until January 31, 2020.

Join us for the Know the Gold Finale and 12-hour radiothon.

January 31, 2020, 6am – 6pm
Scheels, 1200 Scheels Drive, Sparks, NV 89434

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Celebrating 15 years with little golfer, Brady!

On September 16, 2019, we celebrated 15 years of hosting our Tournament of Hope to support local children battling cancer. It started as a beautiful day at Montreux, but just as life brings us storms, a rainstorm breezed through the course soaking golfers, volunteers and staff head-to-toe. The storm helped remind us that local children face storms every day. We thought of their resiliency and determination to get through their diagnosis and the importance of the support from others.

We thought of these children, like Brady who teed-off the tournament, and their everyday battle with cancer. “I can’t think of a way that this diagnosis has not affected our family,” said Nicole, Brady’s mom. “It has affected us emotionally, spiritually, financially, and shook us to the core, but we will come out on the other end stronger than ever.” His story is similar to many of the other children NNCCF serves and we are doing everything in our power to ease the burden of his diagnosis. We are grateful for the many sponsors and friends that have supported this tournament over the last 15 years and we hope the sunshine after the rain reminds everyone that there is hope after a cancer diagnosis.

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[one_fourth]PLATINUM SPONSORS
Panattoni
Bonanno Concrete/ MDB Trucking
Alston Construction

GOLD SPONSORS
3D Concrete
Desert Fire Protection
Granite Construction
Newmont Goldcorp
Renown Children’s Hospital
Robin S. White, MD
Sierra Nevada Construction
Vasko Electric[/one_fourth][one_fourth]

SILVER SPONSORS
Aerotek
Baker & Jennifer Krukow
Capital Glass
Hankin Speciality Elevators
Jensen Electric
Kidder Mathews
KS Dealer Services
Lewis Roca Rothgerber Christie
McDonald Carano
Morgan Stanley
New Millennium Building
Systems
NV Energy
Outlets at Legends[/one_fourth][one_fourth]
Panelized Structures
Phillips Family Foundation
RHP Mechanical
Shin-tech
Stowe/Dwyer Charitable Fund
Tectonics Design Group
Ticor Title
Umpqua Bank
Victory Woodworks
Wood Rodgers

WELCOME SPONSOR
Krukow Family Memorial

AWARD SPONSOR
RHP Mechanical Systems[/one_fourth][one_fourth]

FAMILY RECEPTION SPONSOR
Cemex Materials LLC

TEE PRIZE SPONSORS
McDonald Carano
Ticor Title
S&S Activewear

PLATINUM PLUS GAS SPONSOR
Golden Gate Petroleum of NV
PLATINUM GAS SPONSORS
Panelized Structures
TJ Duncan[/one_fourth]

 

 

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A Giant Event for Childhood Cancer Recap

The event in August was a special evening with baseball, music, hope, and San Francisco Giants Emmy award-winning broadcaster, Mike Krukow, and his wife, Jennifer. Hosted at the home of Carol Truman and Bob Phillips, supporters and friends united in the fight against cancer to support local children and research for a cure. We were joined by special guests Kristen Posey, a childhood cancer advocate, and Maddie, a local childhood cancer survivor.

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Dozers & Dirt is brought to you by the former committee of the Reno Big Dig. You may
have operated a dozer or excavator before, but this year join us and get dirty digging-in
your shovels to support local children battling cancer.

Join us for the Launch Party
November 7, 2019, 4:30pm-7:30pm
Pinocchio’s Bar and Grill, 5995 S. Virginia St., Reno, NV 89502

Save the date for the main event
June 6, 2020, 10am-3pm
Rilite Aggregate Pit, 9208 Western Skies Drive, Reno, NV 89511

[button text=”Read the Full Story” link=”https://www.justthepositive.com/blog/bearded-warrior”]
 

“Jonah’s life and ours were affected in so many ways. But it happened so fast that it was really wasn’t noticed. We adapted every day and still are,” said Troy Howell, Jonah’s Father.

 

“For Jonah it was his football. He loves to play football and had just started a new league. He loves training and being around his fellow players. Not being able to train really affects him. He lost a ton of weight and muscle. I see the sadness in his eyes when he must ask for someone to help him get up. We just take one day at a time ‘cause we don’t know what he will feel like each day.”

 

From the financial support and emotional support, NNCCF has been there for Jonah and his family to lean on throughout his diagnosis and cancer treatment. Since the COVID-19 outbreak, Jonah has continued to follow guidelines from his doctors and healthcare providers to stay safe and healthy.

Finding a Community Through Childhood Cancer

Elizabeth and her family were beginning a new chapter in life when they relocated to Reno for her dad’s new job. Little did they know that only days after they moved to the Biggest Little City, their story would include childhood cancer. Their belongings were still tucked away in boxes when they received the news.

The day Elizabeth flew into town, her parents took her to a local Urgent Care due to unexplained fatigue, soreness, and a fever. Everything was new, unknown, and they did not have the information they needed. They struggled to find answers about Elizabeth’s health and she wasn’t yet established with a pediatrician.

Eventually, they were able to see a pediatrician and by that afternoon they were meeting with their soon-to-be oncologist. The doctors advised packing an overnight bag in case Elizabeth needed to stay in the hospital for observation. Elizabeth was 3-years-old at the time and with a little sister, Caitlin, in tow.

“The news was devastating for us,” said Erin, Elizabeth’s mom. “We were living in temporary housing, we had no support network, our belongings were all in storage, and my husband was starting a new job the next week, so we didn’t have current health insurance coverage. Life was a mess.”

Northern Nevada Children’s Cancer Foundation (NNCCF) connected with Elizabeth’s doctors and social workers to organize support for her family. By the time Elizabeth’s parents received the news of her diagnosis, NNCCF had already agreed to cover the cost of COBRA to extend their insurance.

“We had literally been diagnosed for just a few minutes before we learned about NNCCF,” said Erin. “The next day as we were in the hospital, NNCCF came to our room with a giant gift bag filled with toys and activities for the kids and gift cards for us. It was like a big hug, right when we needed it.”

The childhood cancer treatment took an emotional, physical, and financial toll on Elizabeth and her family. Her parents constantly worried whenever she had a fever and expressed that it was “hard to be on guard” for a long period of time. Elizabeth’s mom had to forgo her own job search in order to care for Elizabeth during her 26 months of treatment. There were countless days when Elizabeth felt sick or tired, and for months she was in isolation until her immune system became strong enough to interact with the public.

NNCCF was able to assist Elizabeth and her family with the financial and emotional burden of childhood cancer. NNCCF helped not only with medical expenses, and travel costs related to treatment but helped their family feel included in the childhood cancer community.

“They organized social events that we could attend when we were feeling well, and it gave us something fun to look forward to,” said Erin. “And it was so nice to know we were going to be around other people who were just as cautious about germs as we were.”

Elizabeth and her sister enjoyed stopping by the NNCCF office and choosing a book or toy from the toy closet. It was a real “pick-me-up” for the girls. And although their family had experienced guilt from accepting the assistance from NNCCF – they now advise other parents to be ok with accepting help when it is offered.

“It’s so nice to know that extra help is there if things get overwhelming,” said Erin. “I had to learn to be ok with it because sometimes we really just needed it. And I would remind myself that it feels really good to help others, so it was good to let them help.”

With Elizabeth’s cancer treatment complete, Erin still takes precautions regarding her daughter’s health. Elizabeth has regular appointments for blood work every month to make sure she doesn’t relapse, and they want to follow up with psychological care to test for learning disabilities since it is a common side effect from chemo. Elizabeth is waiting on a procedure to remove her port, which was originally scheduled for March but had to be postponed because of COVID-19. 

Elizabeth’s bell-ringing ceremony and end-of-treatment party were also canceled because of the virus. Her family had invited family and friends from all over the country to celebrate, and they even rented out a trampoline park for their party. While it was devastating for the family to cancel the symbolic ceremony for Elizabeth, they were used to canceling exciting plans last minute because of health concerns. Erin was still determined to celebrate her daughter’s big accomplishment and decided to organize a surprise end-of-treatment parade where people could come and honor Elizabeth in a safe, social-distancing setting.

“It was so special to see all the support and it gave us the closure we needed,” Erin said.

Family, friends, NNCCF staff, Elizabeth’s healthcare team, and many other supporters arrived to drive down their street in decorated cars and blast music. Elizabeth’s family found their support network in the Reno community – and every supporter played an essential role in helping Elizabeth during her cancer journey. The parade was not only to celebrate Elizabeth, but it was an opportunity for her parents to say thank you to everyone who helped them battle childhood cancer. 

Article by:

Allison Kibbe, NNCCF Marketing Intern

Here are two amazing kids that are overcoming cancer.

They are excited for the future and are ready to grow up cancer free. Meet the Rock Star, Kyra, and Fireman, Kahuena!

Rock Star Kyra

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Kyra’s smile lights up the whole room! This spunky seven-year-old wants to be a rock star when she grows up. Her favorite thing to do is sing and dance, especially when her four siblings join in on the fun. Kyra was diagnosed with acute lymphoblastic leukemia in March 2016. She is very resilient, and her body has responded well to cancer treatments. She faced adversity this last year because of being immune compromised. She was unable to attend school, but mom homeschooled her to keep her up to date. Kyra is hopeful to start school in the fall, despite her recent two week stay in the hospital from a virus. Although her diagnosis usually requires three years of treatment, Kyra is itching to be healthy and cancer free!
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Fireman Kahuena

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Kahuena is quite a little gentleman, with good manners and a polite disposition. Kahuena is a Hawaiian native, but his family moved to Reno to pursue more treatment options after he relapsed with rhabdomyosarcoma after only 6 months of being in remission. Kahuena has traveled often to the Bay Area for treatments. The constant treks over the hill can be taxing on kiddos, but he is one strong kid. Recently, Kahuena and his family traveled to Minnesota for a specialized surgery that he required. After his return, his family was happy to share that he is recovering and doing really well. When he grows up he wants to be a firefighter. This seven-year-old has shown immense bravery throughout his treatments, and we know he would make a perfect fireman.
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By Lindsey Gross

Northern Nevada Children’s Cancer Foundation (NNCCF) has a broader definition of “child” than most foundations. While NNCCF helps many children under the age of 18, the foundation also provides financial support for young adults under the age of 21*. Unfortunately, some families with young adults battling cancer are unaware that they are eligible for assistance. NNCCF aims to inform the community that the foundation has resources and support available for young adults.

Johnny Hartman, 19, receiving chemo treatment for lymphoma

One family recently learned that their son was eligible solely by coincidence. John Hartman heard on the radio that NNCCF was hosting radiothon at Scheels, the foundation’s 12-hour finale to a five-month campaign raising awareness and funds to help local children in their fight against cancer. John is a father of twin 19-year-old boys, Johnny and Richard. Johnny, a sophomore at CalPoly State University, was recently diagnosed with lymphoma. John was touched by his family’s experience and decided to make a donation to NNCCF. Unbeknownst to him, he walked into what would become a strong support system for his own son and family.

That night the Hartmans filled out the NNCCF Family Assistance application. NNCCF has the capability of helping young adults who are currently in treatment or in follow-up care for cancer. Many young adults are not eligible for assistance from organizations that specialize in helping children because the age of adulthood in the United States is 18. At NNCCF, as long as a young adult diagnosed with cancer submits an application before the age of 21, they are eligible for emotional and financial assistance until the age of 25.

In 2016, 144 families received support through NNCCF’s Family Assistance Fund and 19 percent of those children were over the age of 18. NNCCF expanded assistance to this older population three years ago to run parallel to its Inspire Survivorship Program that offers services such as scholarships and vocational training for young adults. Through generous grants, NNCCF afforded 15 cancer survivors $57,319 in scholarships through the Inspire Survivorship Program last year. This program offers survivors support and encouragement in the pursuit of achieving their dreams.

NNCCF provided support for the Hartmans as Johnny started aggressive chemotherapy back in January. The family is celebrating as Johnny recently completed his final day of chemotherapy last week, and is hopeful his next scan will continue to show no active cancer in his system. Johnny is ready to get back to normal life and resume studying to become an architect.

The day John walked into Scheels and met the NNCCF staff, there was one thing in particular that stuck with him. It was a response from NNCCF’s Executive Director Debbie Strickland upon hearing his family’s story: “It’s our turn to help you.” John was overwhelmed by the positivity and support he received after speaking with the staff and learning that his family was eligible for assistance. The Hartmans are eager to have Johnny healthy and to also give back to the foundation. One could say it was a bit of fate or a stroke of luck that John decided to give a donation that day. He may have never known that his son was eligible for assistance. NNCCF hopes to help all families with children in the fight against cancer so that they too can have the care and support system the Hartmans found.

*As of 5/1/2019 the NNCCF age cap has moved. NNCCF now serves young adults facing cancer until their 26th birthday.

The Northern Nevada Children’s Cancer Foundation is the region’s only local nonprofit solely dedicated to serving local children and their families affected by childhood cancer. NNCCF’s programs and services include the Family Assistance Fund, Inspire survivorship program, Adopt-a-Family program and emotional support through counseling and family activities.  For more information, call (775) 825-0888, visit www.nvchildrenscancer.org or follow on social media @NVKidsCancer.

 

My experience at NNCCF during a month-long sabbatical

By: Rachel Kiserow
When I was diagnosed with breast cancer in 2011 and underwent surgery, chemo, and radiation in 2012, I realized how critical it was for me to somehow show my gratitude for all of the help and support I received during that difficult time. So, I helped organize Charles River’s annual bake sale in 2016 that benefitted a local charity. I learned about the Northern Nevada Children’s Cancer Foundation (NNCCF), and after being educated on what NNCCF does for our local community, I felt like I didn’t do enough.

That’s what led me to request my month-long sabbatical to be spent at NNCCF.  I was compelled to give back in a meaningful and lasting way. And now that my sabbatical has come to a close, I hope I’ve contributed to the good work that is done by the people of NNCCF each day.  My passion to do more for NNCCF stays with me, and I want to continue to give and volunteer in any way I can for years to come.

My experience at NNCCF has been an unforgettable one, and so much of that has to do with the wonderful people that work day-in and day-out at NNCCF. NNCCF’s work is unlike any other work I’ve ever experienced.  They are driven by the children and families that need their help the most – they take their work to heart and carry an immense obligation to help families in need.  In my short time with NNCCF, I felt this prevailing sentiment each day I was volunteering and I was fortunate enough to witness NNCCF’s impact on children and their families. The experience also gave me a clear understanding of what it means to truly volunteer – to give of yourself without any benefit in return.

Charles River’s Corporate Social Responsibility (CSR) program has grown since inception just a few years ago with an increasing number of employees participating.  Charles River has worked with a number of local, national, and world –wide non-profits because we believe that giving back to our community is crucial to our work and an important part of our employee’s lives.  With our growing number of employees world-wide, the impact on our communities will be exponential if we can all do a little something to give back to those that need a helping hand.  I feel fortunate to work for a corporation that makes community service and volunteerism a priority and for being afforded the opportunity to volunteer for a month at NNCCF. It is an experience that will stay with me for the rest of my life.

I’m convinced of this,
Good done anywhere
Is good done everywhere.”

~Maya Angelou

“Salamat is thank you in Tagalog (Filipino).  Salamat for opening your doors and your arms to me this last month and for making me feel so much a part of the team.  I feel truly blessed for the opportunity to help an organization that does so much good every single day.  You’ve given me an invaluable experience and a glimpse into the selfless work you do each day and the immense impact you have on our local children and families affected by cancer. Our community is so very fortunate to have an organization like NNCCF here, and I’m better off having gotten the chance to get to know all of you

Thank you for all that you do! Count on me for coming back and volunteering again soon!”

– Rachel Kiserow, Human Resources Representative, Charles River

Inspiring Fashion Show with Cancer Survivors

Sofia, dressed in a black and pink ensemble with teased hair and “Girls can change the world” top, was nervous before she took a step onto the runway.

She’s a ten-year-old retinoblastoma survivor and showed the crowd what it looks like to be an inspiring cancer survivor.

“It was a good nervous,” said Sofia. “I knew a few minutes later, millions of – oh not that many people – lots of people would be staring at me.”

The 10th annual Runway for Life Fashion Show was last Sunday at the Atlantis Casino Resort Spa in Reno. Mom’s on the Run included childhood cancer survivors in a runway event to support women diagnosed with breast and gynecological cancers.

The fashion show empowers women and children alike to be confident in their own skin. Sofia enjoyed being a part of the fashion show and her favorite part was being cheered for.

“It made me feel like I mattered,” said Sofia.

Sofia was diagnosed with retinoblastoma a couple weeks before her second birthday and lost her left eye from cancer. She has had three prosthetic eyes and has re-sizing appointments to keep up with her growth spurts.

Desiree, Sofia’s mother, explains the importance of inspiring self-confidence in her daughter as she gets older and nears going into tomiddle school.

 

“We fight extra hard to instill confidence in her and tell her that her physical effects from cancer are marks of strength and beauty,” said Desiree. “The blessing is that she is learning early that everyone has ‘something’ that is hard for them, hers just happens to be on her face.”

The Runway for Life Fashion Show is an example of a positive atmosphere inspiring community support.

“It’s incredible to have an experience where she can tangibly feel the truth of those statements,” said Desiree. “She gets a chance to feel beautiful and celebrated exactly the way she is, prosthetic included.”

 

Photo credit: Heather Gallagher Smith, Sixth Generation Studios.


In 2016, NNCCF featured Maya in the fall newsletter when she was 3-years-old and newly diagnosed with leukemia. Maya and her family started their journey with cancer and were trying to grasp what was ahead in the next couple of years. Maya experienced lumbar punctures, steroids, oral chemo, infusions, and hospital visits. Her family shared their thoughts and fears with us, and we gathered around to support them through their life-changing diagnosis.

Now Maya is an energetic 5-year-old with the world at her fingertips, and we are ecstatic to announce that on June 18, 2018, she rang our “No More Chemo” bell. She celebrated with a large group of family and friends, and rang the bell in her new, pink, childhood cancer survivor dress. The party was decorated, in tribute to her nickname Maya the Dragon, with large dragons made out of balloons and streamers.

Maya’s father, Scott, expressed the gravity behind Maya completing her last dose of chemotherapy, “The emotional weight of the moment was more than I expected – there was some cheering, a few high-fives, but mainly there were firm hugs and whispered expressions of gratitude,” he said. “The reality of this transition was not lost on Maya who celebrated as happily as anyone.”

During Maya’s party, we celebrated the outpour of support from the community during her “Aloha Chemo” fundraiser at Shoe Tree Brewing Co. to benefit NNCCF. The fundraiser raised $9,505 to help local children and families affected by childhood cancer.

“NNCCF is more than just monetary support for families trudging through this mud. It is a safe place to visit, experiences for our kids when they are isolated or not, mental health resources, advice, and hugs. Great hugs,” said Sara, Maya’s mother.

Her family included the fundraising element to commemorate the “beauty of community” and support system they had during treatment. “At first I thought the generosity we received was intended to save Maya’s life. Now I see that our people mobilized to save our whole family– that we might come through this as strong as we were before,” said Scott. Maya and her family presented their fundraising check and equally matched our gratitude to the kind people that support our foundation and families.

Honors Graduate and Cancer Survivor

Childhood Cancer Survivor Victoria recently graduated from the Academy of Arts, Careers, and Technology (AACT). Her high school experience was unique in comparison to her peers; she completed school with CTE endorsed honors and a weighted 4.59 GPA, and underwent 9 months of rigorous treatment for leukemia.

Being a student and a cancer patient proved to be difficult for Victoria mainly because she missed out on social aspects of high school during her sophomore year. She was not able to enjoy learning in a classroom while in treatment and had to adapt to learning in an isolated setting away from her teachers and friends.

At her graduation, Victoria delivered an inspiring speech where she shared her gratitude to the support system that helped her through schooling during treatment. “For the families sitting out there that aren’t aware of this, I was diagnosed with cancer in 2015 and underwent experimental chemo. You need to know that the students and staff sitting up here are the reason that I survived my sophomore year. I never felt alone because the people here today supported me and loved me unconditionally,” said Victoria.

Victoria was an assiduous high school student who earned numerous awards to validate her years of hard work.  She was a four-time Health Occupational Students of America (HOSA) state medalist in Pathophysiology, a HOSA International Hall of Fame inductee, a HOSA state Outstanding Student Leader 2016, and she received the Renown Courage Award. These prestigious awards will undoubtedly help her on her path to becoming a Pediatric Hematologist/Oncologist.

Childhood Cancer in NevadaVictoria was inspired to help children because of her own experience with cancer and enjoys sharing her story with others. The Leukemia and Lymphoma Society invited her to speak in front of 10,000 students about her experience with leukemia. “Being able to share my experience with so many people felt absolutely incredible,” she said.

College is right around the corner for Victoria. She will be majoring in biology at the University of Nevada, Reno, and is excited to take more steps towards her dream job in helping children with cancer. She was awarded the Inspire Scholarship from the Northern Nevada Children’s Cancer Foundation to help her pursue her dreams in medical care.

“To the graduating classes before us: thank you for blazing the trail. To the graduating classes after us: thank you for keeping our legacy alive. And to the graduating class of 2018: I am so proud to be a part of this group. Class of 2018, it’s time to say goodbye and, more importantly, thank you for making me the person I am today,” said Victoria.

On April 23, the Northern Nevada Children’s Cancer Foundation (NNCCF) represented the state of Nevada on Capitol Hill in support of the STAR Act. NNCCF childhood cancer survivor, Johnny Hartman, lead the team and shared his story with legislators. In 2016, Johnny was diagnosed with Stage IV non-Hodgkin lymphoma and completed treatment in May of 2017. We asked him about his trip and how advocating for childhood cancer inspired him.


Q: How was training and the whole run-down on day one?

A: I thoroughly enjoyed training day. The informational sessions made me incredibly excited as I learned how extensive this bill is and how it will be beneficial to so many children and their families. Learning of the new, less-toxic treatment plans researchers are trying to perfect for all pediatric cancers made me excited for the future of immunotherapy and the extinction of chemotherapy.

Q: What was the experience like, meeting legislators on the Hill on day two?

A: The training day was fun, but meeting the legislators was something I will take with me for the rest of my life. First off, it was an honor being given the opportunity to be the voice of pediatric cancer patients across Northern Nevada, but it was profound to also express the importance of the STAR Act by letting our representatives know how essential this bill is for so many families.

  

Q: Who did you meet with on Capitol Hill?

A: I met with Senator Dean Heller and Senator Catherine Cortez-Masto along with their staffers. I also had the chance to meet staffers from the offices of Representative Mark Amodei and Representative Dina Titus.

 

Action Days 2018

Q: Who did you meet from other childhood cancer organizations and what inspiring things did you hear?

A: The training day session was not only a time for soaking up all the information of the STAR Act but also a networking opportunity. I met with other advocates from other states and got to hear of some incredibly empowering stories of other survivors as well as parents of children who have fought, fighting, or are just beginning their cancer journey. Listening to the stories of relapse, children battling cancer even before starting kindergarten, and discovering similarities of common chemotherapy drugs during each other’s treatments all made for profound connections.

Q: How was your experience seeing Capitol Hill and Washington D.C. as a whole?

A: As a person who lives to travel, it was also another gift being able to travel to the most important city in the United States. The history, architecture, and culture of Washington, D.C. is so polarizing to that of the west coast. It was fun being immersed in a society that is a little out of my comfort zone.

Q: What was the most empowering part of the trip?

A: Ultimately, overall, being part of something that could potentially change the future of cancer care was easily the most empowering aspect of the trip.



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