Childhood Cancer for Life

For most of my adult life, my relationship with my body has been an uneasy détente at best.  When I’ve felt held back in life, it’s been the can’t-ever-quite-wake-up of anemia, the loss of my sprinting speed and high school soccer career to my first relapse - and most obviously, its inexplicable consistency in letting mutant cells get cozy wherever they’d like and the subsequent sidelining of every major school-age phase.  I’ve returned the love accordingly - pushing through too many all-nighters with Diet Coke and Skittles, letting potato chips make up a measurable percentage of my daily diet, and generally forcing rather than training my body to do what I want it to.  I haven’t felt fully connected to this thing that I’ve seen as the source of some of my biggest obstacles.

Part of this comes from always feeling like a nail in a room full of hammers.  Outside of the cancer world, rhabomyosarcoma isn’t commonly encountered, and I always felt like new doctors saw me as a curiosity.  Once, when I was describing the fertility saving steps I took during my relapses, a doctor gasped in awe at “how cool doctors are.”  She caught me double check her post-nominal letters on her white coat in confusion.  In college, I went to the student health center for an upper respiratory infection.  They ordered a chest X-ray and set off a week of terror when they urgently needed Emory to send my previous scans - they didn’t know how to read the scar tissue from radiation.  Still don’t remember if I actually got medicine for the infection that brought be there to begin with.  It’s been easier to just keep my head in the sand and avoid doctors all together, all the white expecting the body to fail me again before I’m ready.

I was first diagnosed in 1997 and relapsed in 2001 and again at the end of 2003.  The lag between recurrence was unusual, though it was to my benefit because prognosis for three-time rhabdo is fairly grim.  The in-between time gave me the chance to have the cancer completely surgically removed each time and to regain full strength before going into each new chemo/radiation regimen.  I was in what seems to be the first bubble of kids that were much more likely to survive than in the decades prior.  That also means I was in the first bubble of kids where the medical community was starting to realize long term effects - the quality of survival versus its mere existence - mattered.

The first indication of this nascent consideration was when I was 15 and my mom asked about the new drugs’ effects on my fertility.  We were shocked when we were told that the first chemo regimen probably knocked everything out of the works anyways.  It hadn’t occurred to the providers to address this concern secondary to life-saving, and it hadn’t occurred to us to ask.  Fortunately my mother has a talent for finding solutions, and her research, advocacy, and a few years of medically induced menopause before I was 19 seem to have done the trick.

As an adult, I’d find myself poring over the Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers put out by the Children’s Oncology Group.  This tiny-printed guide book organized by disease and drug are rife with medicalese and sliding scales of possibilities.  Here I learned I should probably start mammograms at 25 (chest radiation) and if my heart was still free from cardiomyopathy into my 20s (doxorubicin), I was probably good there.  I pretty much assumed a future diagnosis of leukemia or lymphoma was inevitable - afterall, chemo causes cancer.  The problem with this research is all of it relies on knowing your dosing.  While I knew we decreased vincristine when I lost feeling in my hands and feet and we monitored cytoxan (my only known allergy) closely - I had no idea what my doses had been.

Ten years after I finished my last chemo, I worked up the gumption to go to a survivorship clinic - still not as common then as they are now.  I looked forward to the relief of beng given a PLAN based on my unique treatment path from a team of medical professionals who didn’t see me as a novelty.  Unfortunately, I learned the team was missing at least a third of my records, and the plan was just print-outs from the already-familiar COG.  I left feeling depleted, and now I know this was the last time I tried to proactively look into my health, the detente with my body firmly established.  I always had an ob/gyn, probably thanks to the proactive care my mom ensured I had and because I’ve never wanted anything more than to be a mom, and I found a dermatologist after a couple years living at the beach with my Victorian complexion.  But I had zero interest in general care or giving cancer or its long term effects any more billing in my life.

Fast-forward another almost ten years, I pushed my body straight into a solid bout of pneumonia over the 2022 holidays, and I was aghast to have only Urgent Care as an option.  I went back to work too soon, until my office big brother kindly suggested I consider staying home until I could speak a sentence without losing my breath.  So a month or so later when I caught sight of an imperceptible bump on my neck, I assumed a lymph node was still cranky from this holiday sickness.  But the farther from the illness I got, the more I noticed the bump growing.  Dear friends (all in the medical field) happened to come for a visit and they took to nagging me to set an appointment, in the loving and persistent way that only longstanding friends can do.

Even with this encouragement and with the knowledge from my dad, a lymphoma survivor, that it didn’t feel like lymphoma, I was frozen when it came to scheduling a follow-up.  It was contrary to my adult life-long avoidance of general care.  I finally had to admit to my chief nagging angel that I’d never make the appointment for myself.  She had me send her my insurance card and I had an establish care appointment before I knew it.

I barely kept from rolling my eyes when the new PCP seemed more focused on my childhood cancer than my questions about long term effects, but when he ordered a CT scan of my entire torso to check out the neck and everything, I couldn’t complain.  It never hurts to have extra pictures of what’s going on.  I was back to rolling my eyes when I got a call about my “lung nodules” and scarring that seemed clearly reminiscent of former battles.  When my follow-up appointment then disclosed the mass on my liver and the referral to a surgical oncologist and plenty of testing, I just shrugged.  Now I’ll always be grateful for this PCP’s caution or intuition.

Three weeks after my establishing care appointment, on my mother’s birthday, I got the liver biopsy results.  While the bump on my neck was absolutely benign, the mass on my liver was definitively “positive for metastatic rhabdomyoscarcoma.”  Un-friggin-believable.

FULL STOP right here.

I want to be VERY clear to anyone reading this that a recurrence after 20 years is exceedingly rare and I fully expect to be a footnote in an obscure medical journal at some point.  I’ve personally coined it the Solomon Conundrum, but I’m open to suggestions.  There is solid, statistical and scientific backing that the five year cure rate is a magic number.  My path is anecdotal, and it should not set anyone’s expectations or concerns for their own long-term futures.  I wrestled with sharing this diagnosis because the last thing I want to do is cause personal fear for my RCD guests, alumni, and their families.  I decided to go ahead and share - with this VERY important caveat - because I think most of us survivors feel the same way about our own self-care and health monitoring.  This just as easily could have been any secondary malignancy or something completely new but needing attention.  While you should have full faith in your doctors when they transition you to survivorship care - I hope this story is a helpful reminder that you really should continue your care with personal agency and attention.  Unlike me, who just continuously gets lucky.

Caveat ended.

As in the first three times, this tumor appears fully resectable.  It’s also growing quite slowly.  Which is why I’ve chosen to hold off on surgery until after my 20 year high school reunion - the chance to reconnect with the people that held me close the first three go’s of this - and of course Red Carpet Day, which I expect to be one for the books.  I made this choice to avoid losing part of my heart along with a chunk of my liver.

One immediate and unexpected effect of the last few months rejoining the cancer world and of choosing to go seven more weeks knowing this joker is nice and cozy in my innermost core has been the complete melting of my lifelong, simmering detente with my body into something of a joyful, peaceful union.  There’s so much more to appreciate than hate.  My body responds very well to exercise, and while it lets cancer grow, it also keeps it encapsulated.  My body endures through where my mind pushes it even with minimal training, and I always recover well.  I can count how many times I’ve truly been sick (cancer aside) on one hand.  My body didn’t sideline me - it’s kept me in the game for 37 years.  And now I have seven weeks to invest in training and nutrition to work with my body to fight this next battle.  And I have a lifetime to nurture that relationship no longer wrought with regret or avoidance.

I hope sharing some of this has encouraged you in your own health journey - whether it’s scheduling that appointment you’ve been avoiding or better appreciating all your body does for you.  Consult your own medical professionals, and stay in tune to your body - but don’t put your head in the sand and regret what you feel you’ve lost.  You own every step of your journey, and cancer can’t take that from you.

#longtermfollowup #childrensoncologygroup #rhabdomyosarcoma #childhoodcancer

Spreading Hope through Crisis

As the world continues to navigate the unprecedented challenge of the coronavirus pandemic, Heart of Passion strives to serve as a platform for hope. Learn more about our approach in this Statement from the HoP Board. To express interest or learn more information about HoP’s coronavirus efforts, please contact us directly and someone from the team will connect with you. Check back weekly for updated opportunities, as we regularly assess needs and receive feedback from our partner hospitals. We hope you join us!

Volunteer!

Be a study buddy for the newly homebound

Tie blue ribbons / wear blue hearts in solidarity with healthcare workers!

Make masks for our healthcare partners, patients and families!

Help gather donations

Make cards / e-cards for hospital staff, HoP families, and/or guests

Hang a rainbow to inspire your neighbors!

Submit social media content to help spread uplifting stories

Social media content

Propose a daily #spreadhope challenge

Shoutouts to support/promote local businesses

General encouragement

Uplifting stories

Donate!

Gift cards to restaurants

Food delivery gift cards

Gift cards to your favorite business to use online or after the quarantine!

Mask-making supplies

Blue ribbons

Blue heart stickers/pins

Money for HoP to use towards our #spreadhope efforts

Resources:

Community Resources for Nola, by Dirty Coast

Camps and COVID-19

Team Captain Angie

Angie Rivera has attended RCD Nola for two years, as well as our Mardi Gras parade viewing party, and 2020′s upcoming virtual RCD!  We have no doubt her story will inspire you down the home stretch of MOVEment weekend!!

Angie getting dolled up at Saks before the RCD Nola 2018 dance cruise.

“Hey guys my name is Angie Rivera, On January 23,2017 I was diagnosed with (ALL) also known as “Acute Lymphoblastic Leukemia”.  It all started because I was very pale , and I had lost a lot of weight , nobody knew what was wrong . I was brought to the doctors several times to check if I was good and they kept insisting that everything was okay . My mother went along with it until my grades started to drop and I was sleeping every chance I got  , with strong  migraines every day . Which wasn’t normal for me at all , I was always full of energy and active .  My mother then took action and brought me to the doctors again but forced them to do a lab test on me and that same day , they didn’t tell me what was wrong they just said that It was mandatory that I went to the hospital that day so I was rushed to New Orleans Children’s hospital . Where I was brought  to the ER for them to do  blood work  and that’s when they discovered that I had (ALL) .  I remember Dr.Cruz giving my family the news that I had leukemia , I was confused, shook And overwhelmed with the news not knowing what was next . “My journey then began after I was admitted into the hospital where I stayed for about 2-3 months and began chemo right after I had my spinal tap procedure done . I thankfully did not need a bone marrow transplant . I remained in very good spirt through chemo days but just like that I also had days where I was stuck and confused on why I couldn’t leave the hospital and do things that my friends where doing, I felt trapped.  During my Chemotherapy phases I felt unhappy at points and felt like nobody understood me . I began to think it was my fault and that I could’ve prevented it but when in reality I couldn’t really do nothing about it . With the process of chemo and steroids my knees and right arm were affected , I was also diagnosed with Avascular necrosis where at times I can’t walk /run long distances because it causes joint pain when I move around. But overall that just made me stronger and gave me a reason to Remain positive and grateful for every day I’m given. “Heart of Passion has helped me find teens who I can relate to with my story and understand me.  With Heart of Passion, I was able to be myself around everybody with not being looked at any less then everybody  because I was “sick.” It has also giving me the opportunity to do things I never did before . HOP never fails to welcome you with caring/ loving leaders as well as mentors . HOP is truly a great experience for teens fighting life threatening diseases , they find many ways to enjoy themselves and get to know other people going through the same illness or alike to them . You make memorable memories that last a lifetime . I always look forward to summer for red carpet week i always have the most fun that one week . I am beyond thankful for this experience I get to have every summer.

Angie and the group after ESCAPING the room at RCD Nola 2018.

Posing at the Audubon Aquarium of the Americas at RCD Nola 2019.

Angie and family at our 2020 Mardi Gras parade viewing party.

Team Captain Josh

Josh Lashley has been part of the HoP Charlotte family since we kicked off the program in 2016!  He has an incredible story, and we’re so glad he offered to share it.  Hope he inspires you as he has us!

Josh and Daniel cruising during RCD Charlotte 2019.

“Hi my name is Joshua Lashley, I was diagnosed with Acute Myeloid Leukemia (AML). It was April 25th of 2015 I believe when i had a really bad neck pains, fatigue, and just know energy to do anything what so ever.  I was always exhausted and never feeling good.  I kept getting bad mouth sores that wouldn’t go away for weeks. After a couple of days went by I brought it to my parents attention that I felt like I needed to go see a doctor after having several fevers. I went to the hospital and they ran a CAT scan to see if anything would come back abnormal which it did. The doctor told my parents that i would need to be further looked at by Vidant Medical in Greenville, N.C.

“After the hematology/oncology ran their tests my results came back with the news of me having the blood cancer which I stated in the beginning of the story. I remember being strong and hopeful about it. I asked Dr.Fuh “What is it gonna take for me to get better? I’m willing to do anything to live!” He told me that I had good spirits and that if I kept that mindset I would be just fine.  I started chemo probably the next day or two and it was real. It was very draining and tough on me.  I stayed as strong as I could and never gave up. The cancer went away and then it came back. Hope still wasn’t lost though!

“I received a bone marrow transplant. I was blessed to have over 38,000 bone marrow matches!!!! I had to go through treatment again then receive my bone marrow transplant. And I have been good every since.

“HOP was very good to me. It helped me be able to find friends who understood what i went though and it also allowed me to be happy. I got to enjoy myself for a weekend of fun with friends who are just like family. HOP helps a lot of kids who are struggling to be outgoing or to find friends during their difficult time of fighting whatever disease they have. I even feel like I uplifted a lot of people’s spirits that I met while attending HOP. HOP is definitely a good group for anyone battling a life threatening disease. It’s even good to the volunteers. They also make friends and good memories.”

Josh and friends walking the HoP Step and Repeat at RCD Charlotte.

Group dinner at RCD Charlotte 2018.

Goodbye hugs at RCD Charlotte 2016

Team Captain Collin

Collin Boyles has attended RCD Atlanta for three years and is captaining our 2020 Virtual MOVEment.  Both his story and his daily workouts should inspire you this weekend AND in life!  Thank you, Collin, for being part of HoP!

Collin kicked off the Virtual MOVEment with time on the elliptical! 

Collin was “MOST SUPREME” at RCD Atlanta 2018!

Collin’s Story:

On July 15, 2015 I was diagnosed with ALL (Acute Lymphoblastic Leukemia). After a few weeks of having flu-like symptoms my father decided to take me to the hospital. After getting blood work done they had discovered that I had blood cancer. They weren’t sure what type of cancer he had so the doctors had me rushed to East Tennessee Children's Hospital.  After I got to the hospital they did blood work and discovered I had an astronomical amount of white blood cells. I spent about a week in the ICU for a total of three weeks in the hospital doing chemotherapy. After I was discharged I had to go for treatment a few times a week for chemotherapy and blood work. I had to move down to Tennessee permanently  from Ohio to continue my treatment. I  spent over a year away from school and my  friends. My treatment lasted for about four years with weekly, monthly, or daily visits to the hospital. It was a hard process to go through but I feel like it made me a stronger person in the end.

Collin playing games at RCD Atlanta.

Heart of Passion at red carpet day helped me because I got to meet new people who had gone through the struggles I went through most of my teen years. Heart of Passion gave me the opportunity to  meet and find new friends who I can relate with and talk to about what we went through or what we are going through.  Heart of Passion at red carpet day has also helped me step out of my comfort zone and made me try new things and new experiences. Heart of Passion has some of the best, most caring leaders and mentors who put time, effort, and passion in everything they do with and for the guest.

Heart of Passion has made me feel like a true survivor of cancer.

Collin’s Day 2 Virtual MOVEment workout consisted of 3 sets of 25 crunches and 45 minutes on a elliptical!

#Spreadhope in Crisis

As we are all aware, the world today is unlike anything any person alive has ever experienced.  All ages and backgrounds are learning together.  We’ve seen the COVID-19 Public Health Emergency bring daily news of people hurting or passing away and it leaves us wondering what we could have or should have known sooner.  However, this unique time has also highlighted the unique joys of service, a new appreciation for family, and the value of  little wins.  Heart of Passion (HoP) seeks to add to the latter conversation  and #spreadhope to our greater community.  We also intend to remain as transparent as possible as we face changing and unprecedented circumstances.

During this time of change, some key things for HoP remain steadfast.  We continue to serve our HoP community however they need it most, and we continue to work towards growing our future.  We are also doing our best to let our current Teen Leadership Development Program (LDP) students finish a strong year on a high note.

On March 12, 2020, the HoP Board put a moratorium on in-person events for 30 days with plans to reassess the safety of our events. Since then, federal guidelines and school systems have provided more information.  We will continue to follow CDC guidelines and local/regional requirements for general operations.  As we look towards interacting with our pediatric oncology and healthcare worker populations, we will consult hospitals for guest interaction guidelines, suggested screening procedures, and permission for individual guests to participate.  To stay abreast of the standards within our camping community, the Board has participated in numerous town hall meetings and seminars with fellow members of the American Camp Association, the Children’s Oncology Camp Association, and various nonprofit groups.  We have done our best to stay abreast of the changing environment on a daily basis and are committed to continue gathering as much information as possible to guide each decision we make.

Moving forward, the Board will hold  a special meeting on May 15 to revisit Red Carpet Day 2020 in each of our cities. We could go forward with Red Carpet Day events as originally planned, with the assurance that appropriate health precautions are in place. We could postpone our 2020 retreats until the fall. Or, recognizing how swiftly guidance is changing each week, we could vote to simply “wait and see” as communities continue to target a “return to normal” date. We will make this decision based on federal, local, and regional guidelines, industry discussions, and the comfort and preference of our partner hospitals and venues.  The final decision for each city will be made one month prior to the currently scheduled retreat.  We will be transparent through this process and share the reasoning and vision behind each decision as it’s made.

Our LDP is scheduled to wrap up in the coming weeks.  Our high school students have shown flexibility and resilience, continuing towards their year-long goals and shifting to the virtual workshop format.  We will recognize our 2020 student leaders before our graduates leave for college - hopefully for an in-person celebration!

So what now?  Adversity builds innovation, and we hope to live the truth of that axiom - with your help!

Coronavirus affects every population a little differently.  Within the Heart of Passion realm, we recognize that our...

Guests - are high risk and further isolated

Guest families - may have heightened fear/concern for their child

Medical staff - may have concerns with morale, risk of personal health, stress, and supplies

Our LDP Student Leaders - may feel a sense of loss (especially seniors)

Businesses - are losing income/solvency/patronage

Community - are feeling uncertainty, fear, boredom/loneliness, sense of helplessness

To serve these populations, we are offering numerous volunteer opportunities (for anyone!) and donation needs that directly and immediately serve the unique needs outlined above.  We will share needs on our social media page and keep our #spreadhope web page updated each week.  As we all learn this new world landscape together, we hope you’ll join us in spreading hope however you’re able!  Thank you for your continued support of Heart of Passion.  We’re all in this together, and we’ll come out of it stronger than ever.

Best,

Savannah, Hannah, Jae, Margie, and Matt

The Heart of Passion Board

Our guest blogger, Grant, was a guest at RCD Atlanta 2017, and he is raising awareness for testicular cancer. We love having him in the HoP family. I’m Grant Moseley, I moved to TN from GA in July 2016, I was looking forward to my junior year in high school, and getting my driver’s license. In November 2016 I noticed pain and swelling in my right testicle. I could hardly walk, and knew I had to tell my mom. I ended up in Urgent Care the next afternoon. They simply prescribed antibiotics, and said to follow up if things did not improve. Right before Christmas break I spoke with my mom again, and told her things were still not better. I ended up in a doctor’s office the next day. My life changed in an instant. An ultrasound showed a solid mass, I was sent for bloodwork, then scheduled to have my right testicle removed the next day. Several week later it turned out that the cancer had spread, and with one of the Tumor Markers being very high, I was diagnosed with Stage 3 Testicular Cancer. I had to begin Chemo on January 27, 2017. Since the chemo really does a number on your immune system, I was placed on Homebound Services. I did not attend classes at school January-mid April, I also had to stop attending church, Boy Scouts, and youth group due to flu, cold, and other illnesses around Knoxville, TN. At the end of treatment I had another CT Scan to see if my enlarged nodes had responded to the chemo. Imagine my shock when I found out they had NOT. My Oncologist even had me wait a few weeks and sent me for an additional CT Scan to make certain, and it was obvious I needed further surgery to remove the enlarged nodes. I was able to return to school for a couple of weeks in April 2017. Just in time to take the ACT exam. The lymph node removal surgery was scheduled for May 8th, first I was able attend my HS Prom on May 6th. My surgery lasted almost 7 hours. I stayed in the hospital 3 nights. I recovered quickly from the surgery, and even went to Boy Scout Camp 4 weeks later. My recovery from Chemotherapy has been more difficult even after almost 13 months later. Testicular Cancer is not talked about often. I hope to change that and raise awareness about this terrible disease. It is the most common in men fifteen to thirty years of age. But it can strike men at any age. This disease is highly curable if detected early. My hope is that raising awareness will make more boys and men do monthly self- exams.

Neha’s Leadership Journey: Empowerment through Service

Heart of Passion is an organization that creates uplifting experiences for teens with cancer. Our Red Carpet Day (RCD) is a weekend-long event that brings together teens with cancer for exciting activities across Charlotte.

Cancer is a serious illness that affects people of all ages. Personally, I believe that cancer which impacts children and teens is the worst since it brings difficult hardships to the raw youth too early in life. This momentous struggle at such an early age can force someone to lose his or her innocence and hope. It is truly a hefty burden to bear. Unable to even grasp the struggle that teens with cancer face, I wanted to do something to bring a little happiness and create some memorable moments in their lives.

As a Youth Leader for Heart of Passion, I partake in an intensive year-long program that encompasses lessons in service, business, and communication. Since the start of junior year, I have been working with my peers to construct a fun RCD for our guests coming from the Carolinas. The “for teens, from teens” is a major concept that Heart of Passion prioritizes. The activities and events are planned by us, the Youth Leaders, for our RCD guests. To acquire the expertise necessary to plan an expense-free weekend-long event, the Youth Leaders and I train in professional workshops to adopt a stronger confidence to engage in the community and share the purpose of Heart of Passion. Additionally, we contacted local businesses and organizations like Discovery Place Science and Strike City for donations and sponsorships. We even learned grant-writing and earned a grant of $4,500 from KOA Care Camps for HoP Charlotte. Working with community leaders, I have strengthened my networking skills and produced a newfound boldness to approach challenges.

This entire experience has changed my perspective on service. In the past, I simply participated in many community service activities, just counting hours. Imagining Red Carpet Day, planning the weekend activities, contacting businesses and corporations, and experiencing the event with our teen guests is a whole other sphere. To physically construct something that was a piece of my imagination takes service to a brand new level. However, this process was not all smooth-sailing. My team has heard more “No” than "Yes.” But those no’s pushed us even harder to make our vision a reality. Organization helped my team to manage our work and stay motivated to keep approaching companies. All the dedication and community support helped my team construct something meaningful from start to finish. RCD stands as a testament to prove hard work can bring a simple idea to life.

WHOA Nola!! We have received the most leadership applications we've had in YEARS and are excited for a competitive and compassionate cohort! It's not too late to swing by the meet and greet tonight (no rsvp no problem! Just let us know when you arrive!) to learn about HoP - and show us what you want to bring to the team! If you can't make it tonight, don't worry - applications are open until FRIDAY at midnight (link in bio). Thanks for all the interest and good luck! #HoPNola #forteensfromteens #workhardplayhard

HoP: A Platform for Passions, Hannah’s Story

Heart of Passion's Leadership Development Program is driven by planning and development meetings facilitated by young professional mentors for teen leaders. These meetings may include lessons about networking, balancing budgets, email etiquette, or contingency plans to empower these teen leaders to become strong and well-rounded leaders of the future. One of the most compelling lessons that I have been a part of implementing with Heart of Passion is "Passion Projects." This lesson involved the mentors helping the teen leaders to discover and state what they are excited or passionate about and figure out how this passion can be applied to Heart of Passion or Red Carpet Day, a four-day retreat for teens with cancer that serves as a culminating project of the Leadership Development Program. The teen leaders' passions did not need to be directly applicable to the mission, vision, or goals of Heart of Passion's Leadership Development Program. Rather, the mentors wanted the teen leaders to find something that they could get excited about, a unique contribution that they could make to the organization, and execute this activity or project in a way that would also concurrently benefit the organization.

Personally, my passion is working as a child life specialist with children and families who are facing unique challenges and difficult situations, such as a cancer diagnosis, in order to help these children and families feel informed, empowered, and able to cope with these challenging experiences or events. I was an aspiring child life specialist at the time that I applied for Heart of Passion three years ago and I believed that my unique skills and professional interest in working with children who have a chronic illness would fit perfectly with Heart of Passion's ultimate goal to provide a four-day retreat for teens with cancer. Red Carpet Day's mission is to provide teens with cancer respite from their diagnosis and an opportunity to interact and engage with other teens who may be going through similar experiences. HoP was the passion project that I had been searching for as a way to expand my reach and impact on children and families. 

However, when I met my fellow mentors and the 15 teen leaders from New Orleans, I quickly realized that each of us had different reasons for joining Heart of Passion, different skill sets, and different passions. For instance, my fellow mentors were in law school or running a local non-profit organization. In turn, the teen leaders were involved in a variety of after school activities and spent their weekends involved in different interests or pursuits. Their unique reasons for joining Heart of Passion became clear when we executed the aforementioned "Passion Projects" lesson. Photography, sports, and event planning were just a few of the passion projects that our teen leaders chose to pursue and engage in alongside their own Heart of Passion and Red Carpet Day planning. While these projects did not directly relate to Red Carpet Day, the teen leaders were able to creatively and seamlessly intertwine their projects with some aspect of Heart of Passion or Red Carpet Day. For example, the leader who was passionate about photography served as the photographer at Red Carpet Day and built a wonderful and memorable photo compilation of the event. 

Regardless of what your passion is, you can also find a way to seamlessly integrate your talent, skills, and passion into the Heart of Passion Mentor Program or Heart of Passion Leadership Development Program. Certainly, I have come to realize through my work with Heart of Passion that it is critical to have a variety of interests and skills represented in the mentor and leader cohorts in order to develop and challenge the leaders throughout the Leadership Development Program and, in turn, to produce a meaningful Red Carpet Day event for teens with cancer. Indeed, I have learned so much as a professional and am continually challenged personally as I share my passion with the teen leaders and as they share their own passions with me. Consequently, each successive Leadership Development Program and Red Carpet Day event is distinct and remarkable as each mentor and leader cohort has their own individual impact on the process of planning and executing Red Carpet Day. Heart of Passion is continuously looking for committed young professionals and teens to make their own individual impact on this process. Therefore, if you have a passion or talent to share, whether it is fundraising, networking, event planning, volunteering or something entirely different; please join us so you can share this passion and make your unique impact on the mentors, teen leaders and teens with cancer. HoP is a platform for passions, and we’d love YOURS to round out the team as a mentor OR leader!

heartofpassion.org/LCPapply

heartofpassion.org/Mentor

#mentorHoP #whyimentor #pursueyourpassion #mentor #passion #lead

Pierce’s Mentor Story: Five Leadership Lessons Learned

When first introduced to Heart of Passion’s mentor program, I was eager to join because it offered the unique opportunity to teach leadership traits and business skills to high school students, incorporating multiple interests of mine into one experience.  Knowing that it would be my last year in New Orleans, I was looking to volunteer with a non-profit that would allow me to leave a lasting impact on my community, and without a doubt, Heart of Passion offered exactly that.  What I never expected when I first signed up as a Heart of Passion mentor, however, was the incredibly transformative impact that HoP would end up having on my own personal leadership style.  Despite only working as a mentor for a year, my experience with HoP has helped me become the authentic and passionate leader that I am today more than any other organization with which I have worked.

In many ways, Heart of Passion’s mentor program has unique qualities that set it apart from many of the other organizations with which I have worked have, pushing me to further my talents and strengthening my effectiveness as a leader.  By working with the leadership team to formulate a plan and then executing that plan with the teenage leaders, I found that my time as a mentor was just as much about helping our leaders grow as it was about growing as a leader myself.  While this mindset was integrated into everything we did within the mentor program, there were major themes throughout the year that I noticed were especially important in helping me grow as a leader, making Heart of Passion the unique and transformative experience that it was.

Beginning Everything with a Clear Understanding of “Why”

From the very first conversations I had with the Heart of Passion leadership team, I have always noticed a strong emphasis placed on the “why” behind everything we do as an organization and, furthermore, everything we do as an individual.  Each HoP volunteer is drawn to the same mission and works towards a common goal, but what motivates each of us to work towards achieving the best possible outcome is unique.  After starting our year with the understanding of why we joined HoP, we continually returned to this firm foundation throughout the year, ensuring that we stayed focused on what we needed to achieve.  During phone calls with the leadership team, conversations between the mentors, and meetings with the teenage leaders, all aspects of our work focused on grounding ourselves in the intrinsic and unique motivation that each of us had, remembering at all time that we worked hard to guarantee the best possible experience for our guests.

Identifying and Developing Individual Strengths to Create a Cohesive Team

After strongly focusing on motivation, Heart of Passion’s mentor program devotes a large amount of time to helping each mentor realize his/her unique strengths within the team, capitalizing on these to ensure that the entire group works effectively to realize our common goals.  As I worked throughout the year with the two other New Orleans mentors and the leadership team, I was impressed by how HoP pushed each of us to understand and communicate our own personal strengths and weaknesses.  When it came time to work on anything as a group, we were encouraged to take on the responsibility of tasks that we thought were well-suited for us as well as to speak up about anything that might be a weakness of ours.  After only a short amount of time of working together as mentors, the three of us understood how each person would best contribute and where each person might need help. Heart of Passion’s goals, while somewhat daunting when we first started out as mentors, became easily manageable and perfectly executed because HoP helped us to understand how each of us could contribute effectively as mentors.

Using Honest and Positive Communication to Encourage Growth

Because Heart of Passion operates in multiple cities, proper communication was an essential component of our success throughout the entire year.  While “communication” seems to be a tenant of pretty much every organization, HoP specifically challenged us to take it one step further than what I had experienced elsewhere.  Instead of using communication only as a way to get our ideas across, we further used it as a very positive and encouraging tool to help delegate tasks effectively, speaking directly to whomever we thought was best suited for the job.  Since HoP had helped us to understand our individual strengths and weaknesses as mentors, we would often nominate each other for specific tasks based, simultaneously acknowledging past successes while motivating future ones.  Furthermore, when it came time to work with the teenage leaders in planning Red Carpet Day, we as mentors understood how to use communication to help lead and encourage them to pick specific tasks based on their unique leadership styles as opposed to simply interjecting with our own ideas or choices.  By placing the emphasis on communicating goals and visions instead of directions and rules, Heart of Passion’s mentor program taught me how to best use communication to encourage the entire team’s growth.

Improving Leadership Skills by Learning and Applying New Techniques

While most of what I have already mentioned about Heart of Passion involved strengthening leadership traits that were already in place, one of the most personally transformative aspects of the mentor program came from the exposure to new leadership styles that I was immediately able to apply.  After each phone call with the leadership team to discuss what we were teaching in the weeks ahead, I loved how I was able to take everything new that I was learning and actually use the information when working with the leaders.  Whether it was writing a 30 second elevator pitch or planning an entire fundraiser, Heart of Passion provided hands-on opportunity to apply these newly-discovered leadership skills, ensuring that I fully understood how to use them myself.  By learning about, applying, and then teaching these skills, Heart of Passion’s mentor program challenged me to reach a better understanding of different leadership styles as opposed to other programs which emphasized learning far more than application.

Exploring New Ideas in an Encouraging Environment that Promotes Growth

Throughout my year as a mentor for Heart of Passion, one aspect of the program that helped me grow most as a leader was that I was continually encouraged to try different ideas, work on new projects, and explore new leadership styles, all with the understanding that it was okay to make mistakes along the way.  All too often in the leadership programs in which I have participated, I was told exactly what to do and how to do it, learning leadership as a specific action or skill as opposed to certain traits or characteristics.  As a Heart of Passion mentor, I was pushed to explore my own leadership style within an environment that focused on growth as an individual.  If at any point something I tried was not working, we, as a team, used that opportunity to remind ourselves of the goal and come up with a new solution, using any past mistakes to help guide us in a more successful direction.  Heart of Passion’s mentor program provided the space that each of us needed to explore our own ideas and try out new skills, helping us to discover our unique leadership styles with positive encouragement along the way.

While there are potentially many ways to accomplish Heart of Passion’s ultimate goal of a successful Red Carpet Day, it effectively achieves this every year through its unique organizational structure where mentors are trained to help facilitate the teenage leaders in planning the entire event.  Throughout my year-long experience, Heart of Passion’s mentor program ensured not only that I would be ready and able to teach the skills that the leaders needed for a successful year, but it also helped me personally to discover and develop my own leadership style, something I had not been pushed towards in the past.  My time as a Heart of Passion mentor was different than any other leadership development program that I have experienced, and I continue to use what I learned in every new leadership opportunity I undertake.

Want to be a mentor yourself?  Visit heartofpassion.org/mentor today!

Nowhere in life is worth going if you can’t reach back and help someone else...

HoP Nola Mentor Brie’s Story

I first found out about Heart of Passion through a best friend who worked with Teach For America. The organization was kicking off a new guest mentor program as a way to expose more young adults with the great things they were doing and the expectation of me as a guest was to simply observe the meeting.

After just thirty minutes of sitting in, I knew this was an organization I wanted to continue working with. Seeing students discuss topics such as fundraising and event promotion while they were growing in leadership was fantastic and I knew I wanted more of it.

I’ve always been an advocate for mentorship, believing that nowhere in life is worth going if you can’t reach back and help someone else take similar steps. So having a regular space to pour into teens has been a huge blessing for me. Something I love about HoP is that they don’t just use the motto “for teens by teens” because it’s catchy. They do everything in their power to make sure that the teens are the driving forces behind all that the organization is doing. They foster a sense of true ownership.

If you’re looking for an organization that does a lot handholding and coddling, this is not it. But if you’re looking for an organization that will teach transformational life skills to students and then give them the space to use them, then you should definitely mentor as a part of Heart of Passion. It will help you to become a better teacher, a better leader and even a better student.

www.heartofpassion.org/mentor

For #HoPAtlanta's next GIVEAWAY we’ll be giving a basket filled with Heart of Passion swag shown here, a $50+ value! Donate $10 to http://www.heartofpassion.org/donate and like this post to be entered for a chance to win this great basket! The winner will be drawn on April 24th. Spread the word! #forteensfromteens #inittowinit #grabthatswag #donate #hop2017

Hi, I’m Savannah Solomon! I was 11 (going on 12), 15, and 18 for my diagnoses of rhabdomyosarcoma (left shoulder, right lung, right lung, done). Slight cop out, but I detailed the diagnosis feelings here. My peers helped me stay positive when they showed in very thoughtful ways that they knew I was going through something and they cared - but keeping me as part of the normal conversation. For example, my soccer team gave me head scarves in our team colors to wear to the games, and they sprayed their hair to match. Just laughing and spending time with me was absolutely key. I obviously have a unique relationship with RCD because it's more like my baby than my vacation - and I've been to 19 of them, so picking a favorite memory is practically impossible! The first event was four months after I finished my second bout of treatments, and hundreds of people from Atlanta has supported it coming to fruition. They put in the memo line of their checks "For Savannah's dream," which sounded unbearably cheesy to me at the time; however, now it's the best (although still cheesy) way to describe it - like watching a dream play out in real life. I did not expect people to share how important the event had been to them on a pretty deep emotional level, but the feedback from a girl named Erica from Charleston that said she'd never before felt comfortable with her cancer until that weekend struck me. We weren't providing a party - we were giving comfort. Fastforwarding, the third RCD Atlanta was unique for me because I'd only been off my final treatments for a few weeks. I was incredibly weak and underweight - and fit every quality of our priority registrants (relapse, homebound, recent treatment). RCD 2004 drove me through a semester of treatments, and it was when I first added a training element for the teen leaders. After that event, I knew continuing and expanding the event was as much a part of me / my future as my right arm. I founded HoP within the following month. Every single event lends at least a few glimmering memories, so I won't run down all 19. As I've gotten older, my memories come from watching the teen leaders own their retreats and hosting with incredible grace and enthusiasm, and I love when their success allows me to stay in the background. #ForTeensFromTeens has always been the magic of RCD. That and the laughter, relationships, and wall-tumbling at a key phase in every guest and leader's life is the heart of each of my favorite memories. #MissionMoments by #HoPCharlotte

HoP Stories - Bryce from RCD NOLA

I’m Bryce. I was diagnosed at 15 with testicular cancer, I went into treatment the day after Easter day of 2015. I then went into remission at the end of July the same year. It affected my teenage life because I was In the middle of my 10th grade year, it affected because some people reacted differently than I thought they would and It was hard for me to trust many people after that experience. I then got invited to the Red Carpet Day about 2 weeks after my last treatment. When I went I was very self-conscious because I was bald, a six foot nine inch stick that weighed about 150 pounds. But as I met more and more people I soon saw that everyone looked like the way I did, bald and looking like a sickly child. It has changed my life as a teenager because I was not in a good place in my head, and when I went to The Red Carpet Day it broke me out of that mindset and that shell that was built up because I saw people the same age as me with what I had and the same symptoms. I did not feel out of place there, it was a comfortable place to be because everyone talked to you and did things with you. They did not make you feel like they were there for you, but you were there together. One of my favorite moments of Red Carpet Day was when we went on an airboat tour, I myself is from Louisiana but it was really interesting seeing other people looking and awing at people who saw something new and interesting. The time I had at Red Carpet Day was the best experience I could have after my treatment to break me out of my shell. #MissionMoments by #HoPCharlotte

HoP Stories - Guadalupe from RCD Nola

I’m Guadalupe.  I was diagnosed with Hodgkin's Lymphoma on May 10th, 2016. At the time, I was 16 years old and had already been through one surgery for a biopsy of a swollen lymph node on my neck. After being diagnosed, I stayed in the hospital for my second surgery for the chemport and to begin my chemo treatments. I never returned to school, but I did receive calls from my teachers checking up on me. During the days of my first few days of chemo treatments, my friends would often check up on me if they saw I posted on social media, but their messages soon stopped. It would be nice to say that I did have their full support through those days, but I never spoke to many of them until later on towards my last chemo treatment in August. Because of that, I almost didn't attend the RCD trip because I was so upset of everything that happened. The nurses eventually convinced me to go, and I'm really glad I did because I met really nice people and made new friends who understood better. The trip really helped me cheer up a lot, made me feel more normal- made me forget I had cancer, made me realize things I was still capable of doing if I tried, and helped me make an amazing friend that I still talk to today. My favorite memory from the trip is the dance on our last night there. We went on the Creole Queen paddlewheeler boat and just the view alone was so mesmerizing and beautiful. The dancing part of the night was also fun despite any walking problems I had then because there were people there who made me lighten up and actually step out of my little 'awkward shell' and dance with the others. #15YearsofRCD #ForTeensFromTeens #MissionMoments by #HoPCharlotte

HoP Stories - Joz from RCD ATL

I’m Joz.  It was 2011 and I was 13 yrs old. Finding out that I had cancer and was only in the seventh grade completely changed my life! All of a sudden I no longer felt normal nor did I feel as though I was a kid anymore... Unlike many kids I was in a hospital almost 24/7, instead of going to sporting events, school plays, parties, or even just out with my friends, I was in Memorial Hospital  in Savannah GA getting Chemotherapy, Dulcolax lol, disgusting hospital food, and laying a cold brick of a bed but it was my reality.. I thought my life was going to be written differently..  As a teenager that was my life for 3 years so I really don't know what it is like to be teenager but with the help of my peers at school and my really close friends,they helped me keep my head up a lot. My peers kept me up by doing things in school by trying to involve me even though they knew I would be too sick or blood to low to attend but they would always send me cards to assure me that they were thinking about me and that they loved me very much! My peers also came and visited me while I was in the hospital... that made me feel very great because I could how much people cared even though I felt like they didn't.. But the biggest impact on my life came when I was asked to attend a Red Carpet Day Event... I had no clue what I was getting into but when we arrived to Atlanta I was more than glad that I had chosen to attend. RCD made me feel like a teenager for the first time ever! The activities that they did with us and the places that they took us just gave us the opportunity to be teenagers and kids again and not have to worry about our next treatment or when we'll have to go back to the hospital. RCD gave us kids and teenagers the happiness that we kids needed and the friends that would forever be lifelong! I had great memories that I'll never forget... One great memory from RCD is trip to Stone Mountain... I had never been! It was so fun! I got to get on the ride that took me to the top of the mountain and that was the best feeling ever! I felt as though I was on top of the world! Another great memory is when I met a girl name Angel Watkins. She was  there as well and we connected very well. She and I both had the same cancer and were both diagnosed at the same age so we had a connection from the start but unfortunately she had lost her leg but that didn't stop her! She taught me that it doesn't matter what the circumstances are you can still be brave and keep your head held high! She taught me that it doesn't matter what others think because her smile was so wide and bright you could tell she had no worries! I had made a lifelong friend thanks to being apart of such an amazing gift (RCD)given to children to be themselves. #15YearsofRCD #ForTeensFromTeens #MissionMoments by #HoPCharlotte