The meaning behind the music – an interview with Kathy and Buddy Oliver

Kathy and Buddy Oliver met in the fall of 1987 at Lebanon Valley College where Kathy was majoring in social work and Buddy was majoring in Music. Their son, Bo, was born in 1996 followed by their daughter, Rachel, in 1998. After Bo’s cancer diagnosis in March of 2012, the Olivers began their relationship with The Ulman Cancer Fund; first as recipients of support and then as ardent supporters themselves, committed to improving the lives of young adults faced with cancer.

 

Tell us a little bit about Bo’s cancer journey and how Ulman fit into it.

Our son Bo was diagnosed with Ewing’s Sarcoma, a rare pediatric bone cancer, in March of 2012, while a sophomore in high school. Bo’s initial course of treatment included 7 months of intense chemotherapy, radiation and then a stem cell transplant, to which his body’s response was very positive. In March, 2014, the cancer returned once again. This time, a donor lymphocyte infusion (DLI) was recommended. In May of 2015, we were told by our doctors that they had no further options to help Bo. Regardless, we were able to extend his life through the use of multiple holistic treatments and therapies. On June 1, 2016, Bo lost the toughest battle of his life. He faced the disease with a resilience, strength, and faith that was awe-inspiring. We initially heard about Ulman through our social worker, Allie Gubin.  Bo was fortunate to have been a recipient of a scholarship through Ulman. We also received help through Helping Others Fight.

How did your own community rally around you while you?

We have been so blessed by our community.  They have held many fundraisers for us, made us countless number of meals, visited Bo in the hospital and at home, went along on appointments, cut our grass, cleaned our house, offered emotional support, organized and attended prayer vigils, and always loved on our family.

Buddy, in what ways has music impacted your life and how did you pass down your love of music to Bo?

Music has been the single largest influence in my life. I started listening to music as a small child as my father was a stereophile. I started playing music in third grade and never stopped. The summer after my high school graduation, I was privileged to play with a Jazz group at the Montreux Jazz Festival in Switzerland which was a milestone event in my life. Music has even been an expression of my faith as I was a worship leader for almost 20 years.

For these reasons, Bo didn’t have a chance. We have a photo of him at probably 2 years old sitting behind a drum set of an old bandmate of mine. Our kids always were encouraged to do their own thing, he just always came back to music. I believe certain talents are part of a person’s DNA, Bo’s DNA was a music staff full of notes. He was truly gifted from birth and by the time he was in high school he was rivaling my 30 years of experience. As a Junior in High School, he auditioned for, and was accepted to, one of the most prestigious music schools in the world, Berklee College of Music in Boston –  which has produced almost 300 grammy winners.

Besides his love of music, Bo was also known for his quick wit, incredible sense of humor, and his love of ‘Merica. He had a definite sense of right and wrong and loved his family and fiance with all that he had. His faith was an integral part of who he was. He had a presence that filled up a room when he entered it. He had the gift of being able to engage with people of all ages, backgrounds, and ideologies.

Kathy, you recently went on UCF’s Key to Keys Experience. What was that like?

I went into the Key to Keys ride thinking the biggest challenge was the physical part, the ride. I had no idea how emotional the week would be. I was in a group of people that actually got how cancer impacted my life. I was given the gift of being able to talk about Bo, tell his story and talk about the BoStrong Foundation. I was also given the precious gift of being able to listen to other people’s stories. I have been blessed with being a part of another community of amazing people.  

What is the BoStrong Foundation?

We established the BoStrong Foundation in 2017 with the mission of supporting holistic wellness for young adults fighting cancer and their loved ones through education, enrichment, engagement, and experience. Our daughter Rachel and Bo’s fiance, Bailey Jones, serve as co-vice-presidents. They represent the organization and help with fundraisers and other organizational activities. BoStrong’s current focus includes:

  • Teaming with Ulman Cancer Fund to provide a music healing space and supporting programming in the Ulman House.
  • Educating young adult cancer patients and their caregivers about holistic treatment options and therapies.
  • Instilling confidence in those on the cancer journey that it’s “OK” to take control of their treatment, ask questions and explore options.
  • Connecting patients with available resources to support them in their cancer battle.

At this point, Bo’s passion for music is pretty apparent, but why did you decide to create the music room in the Ulman House?
Bo’s own words describe the power of music best…

What I really needed was something that would relax me. Something that would pass the time and ease the horrible and terrifying battle that I had with Cancer. I knew it! My guitar. Every second I was on the inpatient floor I was playing my guitar. I truly believe that the guitar made me feel better. Music has such a way of relaxing you. I know for me, I get sucked into my playing. I’m in a different world. Whether I’m on stage with my band or in a dinky hospital bed with my amp plugged in next to me playing for my family and the nurses. Along with anyone else that wanted to hear. Music is a medicine that did more for me than Chemo ever would. Chemo wasn’t there to take away the stress of having Cancer. And it certainly didn’t make my time in the hospital enjoyable. Music made that experience bearable.
Bo Oliver

 

We don’t just believe music will help the ‘experience’ of treatment. We believe it IS treatment and Johns Hopkins along with NIH and many other medical learning institutions agree. There are countless papers and studies validating the healing power of music, particularly in cancer patients. We believe that the music room can be part of a holistic and complementary treatment regimen. Through trained music therapists that will be available, we can work with young adults on music therapy, drum circles, singing bowls, education on curating playlists geared toward pain management, depression, anxiety, etc. These lists can be used in the ‘sanctuary’ of the dedicated music room as well as while in therapy.

How can the Ulman community help with the process of completing the room and/or carrying out your goals for patients staying at the House?

The Ulman community can help primarily through exposure and highlighting our foundation. They can join with us on events, lending weight and credibility to our cause. We still need to raise considerable resources to build out and outfit the room. Any connection with and exposure to donors is helpful. After the room is completed, we will rely heavily on the Ulman House staff to promote the room and its programming to the residents. We will need help coordinating and scheduling programming with therapists. We will also be organizing ‘Jam Sessions’ for residents who are musicians by bringing in local ‘on call’ semi-professional volunteer musicians. We will also collect feedback on the state of the room, any suggestions for improvements, maintenance needs, training, etc.

If you would like more information about the BoStrong Foundation or would like to contribute to the building out or operating of the music room, please email Kathy and Buddy at: partners@bostrong.us.

 

 

The Ulman House – A Visual Timeline

The new year brought a ton of progress to the house! It is amazing how quickly things moved along once the foundation was laid. The focus in January was getting the structure and the beams in place. With the walls up, we were able to put the windows (generously donated by Vytex Windows) in the back of the house. The facade took a little longer to complete as work needed to be done first to remove the Formstone and then to restore some of the brick and make the windows and door spaces uniform. This work was done throughout March and April and as you can tell from the pictures, the facade is beautifully restored to its 1905 glory!

<<Click here to see the deconstruction process>>

May was an amazing month of progress on the house. With the structure nearly complete we got to spend a lot of time inside going over all of the details that will make the house both comfortable and functional. We went through the placement of the outlets, whether doors would open into rooms or swing out, where to place the pulls on the kitchen cabinets, how to incorporate the original salvaged wood, how big to make the back decks, and so much more. There is an incredible amount of detail involved in bringing a house to life and we are so fortunate to have the amazing talent of J Cole Builders to help us through the process.

As construction begins to wrap up we will we need the help of our wonderful community to make this house a home! With the beautiful vision of our founder and interior designer Diana Ulman, we have created our Housewarming Registry to begin furnishing the space. We ask that you visit the registry and purchase an item for the house that will make our guests’ stays a little more comfortable. We’ve put everything from kitchen utensils to furniture on our registry. Feel free to purchase something individually or team up with friends and family for one of the bigger items. Donations are tax-deductible through an in-kind gift receipt. Please direct any questions to maeve@ulmanfund.org.

We look forward to working with our community to make the Ulman House a home!

 

January 

After the steel beam was placed, the walls and trusses were erected. All of the trusses for the ceilings were carried through the alley by hand. Our construction crew are masters of navigating the challenges of building in Baltimore!

 

February

We have windows! The natural light that will come in through the many windows- including two amazing skylights at the top of the main stairs- will create a bright welcoming atmosphere for patients and caregivers.

 

March

After the Formstone was removed, the brick mason spent countless hours refurbishing the brick and making sure all of the window and door openings were uniform. The stars you see aren’t just for looks, they actually provide important structural support from steel rods that go deep into the house.

April

The Music Room is coming to life! Insulation, sounds proofing, and drywall were completed this month.

                    

May

See that giant generator? Generously donated by Windsor Electric, the generator can power the whole house in case of emergency. Our beautiful cabinets were also installed in May a gift (along with all of our appliances) from the Maryland Homebuilders Cares Foundation.

 

 

A community of support – A word from Sophia, Volunteer Coordinator, Ulman House

When I first heard about the Ulman Cancer Fund for Young Adults, I was in college and looking for an adventure.

I found the 4K for Cancer and immediately was struck by the power of the mission. I remember searching UCF online and getting caught on the mention of community.  The word “community” was the first thing that caught my attention. “A community of support” was at the center of my own personal mission and I knew I wanted to be a part of an organization that was utilizing this to support young adults with cancer. Fast forward two years to when I signed up for the 4K to fundraise $4,500 and bike 4,000 miles across the country. I wasn’t sure I was cut out for that kind of experience and was about two clicks away from rejecting the offer until I read about the dedication circles that started every ride. The idea of motivating with the mission every morning was my first inclination that this would be something life-changing. I completed the 4K for Cancer ride in August of 2017 and less than a month later moved down to Baltimore to start an AmeriCorps year serving at UCF as the Volunteer Coordinator.

Throughout my service year as the Volunteer Coordinator, I have been able to expand my ideas of what volunteerism is, what it can be and why our volunteers are the lifeblood of our organization. Our organization is unique because of the diversity of our programs and the varied use of volunteers. Volunteering for UCF can mean cooking and delivering a home cooked meal to a patient, helping run registration at one of our many events, serving food to our 4K for Cancer Riders and their families at send-off or even planning an activity hour for guests staying at the Ulman House. Coordinating the Volunteer program has allowed me to observe how powerful a small act can be to a patient who is going through so much. I have watched as some of our incredible volunteers have changed lives with simple acts of service, and that is pretty special.

When I came onto the team in August, I saw that our supporter and volunteer network was large and long-standing. The individuals who have supported UCF often come back and support again and again and again. The commitment of the volunteers is one of the reasons we are able to put the idea of a free housing opportunity for Young Adult patients into reality. As we prepare for the Ulman House to open, there is an incredible opportunity for volunteers to hop on board and be a part of the (literally) groundbreaking project.

Volunteers write letters to patients in treatment

Volunteers at the Ulman House could help with…

  • Check-in desk duties
  • Setting up an activity hour for our young adult guests and their caregivers.
  • Preparing meals
  • Keeping the house clean and comfortable for our visitors

with more opportunities to come!

My favorite moment of my service year has been our Martin Luther King Jr. Day of Service we had in January. Unsure of how the turnout would be we were thrilled that over 50 people donated their days off and came ready to help out. There was an overwhelming sense of purpose in the room as the volunteers packaged chemo care bags, wrote cards to patients and nurses, and helped clean up the neighborhood in East Baltimore where the Ulman House will soon be opened. It was a wonderful day full of connections, laughs and an important reminder of what we can accomplish when we come together.

Volunteers pick up trash and clean up the community around the UCF house

 

Sophia Garber

Volunteer Coordinator, Ulman HouseSign up to Volunteer

UCF Milestone: A Victory in Annapolis

Dear UCF Supporter,

Parenthood is a lot of things. Being a parent is frustrating and hard and miraculous and exhausting and beautiful and thankless and joyful and overwhelming. It is everything–sometimes all at once. And yet, it is by far the most rewarding, important thing I do. Like many, I could probably write about my experience as a parent until it’s an entire novel. But today is not about me. It’s about all of the to-be parents who will now be able to experience what it means to have a child, even after going through cancer treatment.

 Around 10 years ago, the Ulman Cancer Fund for Young Adults first sat down with young adult cancer patients and their families in a hospital room to seek out the ways in which we could make this experience better. What resources were they lacking? What had they wished they had known prior to treatment? This is where I first learned about the dire need for fertility preservation–and the extreme financial burden that comes along with it. At that point, Maryland law did not require insurance companies to cover fertility preservation, which would only add to the high costs that come with a cancer treatment. During treatment, the high levels of radiation can lead to the destruction of fertile egg or sperm cells, severely limiting the chances for patients to have a child of their own. For a young adult who already has to spend their weekends in a hospital bed, instead of out in the world gaining life experience, this seemed like twisting the knife. We had to do something.

<<Read the full Press Release HERE>>

After countless hours of meeting with elected officials, medical experts, and many courageous individuals who fearlessly told their stories, we succeeded in getting our bill passed through state legislation. It mandates that medical insurance companies cover the cost of preserving a patient’s fertility. In other words, just because you had cancer does not mean you can’t also be a parent–a no brainer, in my opinion.

Ultimately, this bill is about choice. Not everyone knows for certain that they want to become a parent, especially if they’re only in their young twenties, for example. But imagine what it might feel like if the option is entirely stripped from you, or if it’s because you can’t afford it? No one should ever have to face this decision, and now–at least in Maryland–they won’t have to.

It seems fitting that only two days after Mother’s Day we are able to come together to officially cement this bill in legislation. There has been so much hard work, bravery, and thought that has gone into crafting this bill, and I am so proud of our team and everyone who has had some contribution into creating this milestone for the Ulman Cancer Fund for Young Adults and the young adult cancer movement.


Brock Yetso,
President & CEO

Governor Hogan Signs Legislation Making Fertility Preservation Affordable for Young Adult Cancer Patients

The Ulman Cancer Fund for Young Adults spearheads passing of bill that will preserve the possibility of family for thousands of Marylanders

BALTIMORE – May 15, 2018 – The Ulman Cancer Fund for Young Adults (UCF) is pleased to announce that Governor Larry Hogan signed legislation this morning requiring insurance coverage of fertility preservation services for cancer patients who face infertility from their treatments. Maryland is the third state in the country to provide this important benefit.

 

This law will require certain insurers, nonprofit health service plans, and HMOs to cover standard services like sperm banking and egg banking for at-risk young cancer patients.

 

 

“For many young cancer patients, loss of fertility is an unfortunate side effect of treatment. But the fact is, we have the medical means to preserve the possibility ofparenthood for these patients,” said Brock Yetso, president and CEO of the Ulman Cancer Fund for Young Adults. “Parenthood is a fundamental life function that shouldn’t be eliminated due to disease or financial barriers. We’re proud to say that, in Maryland, fertility preservation is now an affordable reality for the majority of cancer patients.”

 

The financial cost associated with emergency fertility preservation is often too great for patients to manage, especially on top of other medical and treatment expenses. The cost is particularly high for young women, often exceeding $11,000 for egg retrieval and freezing.

 

According to a Maryland Health Care Commission Report, the costs for this benefit would be minimal – between $0.14-$0.24 per member per month – in added insurance costs.

 

“We strongly believe that having cancer should not preclude having children,” said Joyce Reinecke, Executive Director of the Alliance for Fertility Preservation. “Young cancer patients have already suffered enough, and they deserve the chance at a full and complete future after cancer. This coverage protects that chance.”

 

 

UCF advocated for this bill alongside the Alliance for Fertility Preservation, University of Maryland Greenebaum Comprehensive Cancer Center, the Shady Grove Fertility Clinic and countless patients and survivor advocates who testified at committee hearings supporting the bill. The bill will go into effect on January 1, 2019.

 

About the Ulman Cancer Fund for Young Adults

The Ulman Cancer Fund for Young Adults is the oldest and largest non-profit, 501(c)(3) organization in the United States solely focused on the unique needs of young adult cancer patients. Founded in 1997, the Ulman Cancer Fund mission is to change lives by creating a community of support for young adults and their loved ones impacted by cancer. The organization works at both the local and national level to ensure all young adults (age 15-39) impacted by cancer have a voice and the necessary resources to thrive. For more information about Ulman Cancer Fund, visit: ulmanfund.org.

 

###

Media Contact:

Molly Dressel

Abel Communications for Ulman Cancer Fund for Young Adults

molly@abelcommunications.com

443-986-1173 (cell)

443-961-4410 (office)

 

 

Your Voice Matters – A word from Brock, President & CEO

 

Giving remarks at 2012 Columbia’s Cure

The month of April marks the beginning of spring.  For so many of us, this time of the year represents transformation.  As we transition from winter’s cold and darkness to summer’s warmth and light, spring gives us a chance to reflect, renew, and celebrate.  For these reasons and many more – the beginning of baseball, hockey playoffs, spring break, family BBQ’s, late nights playing ball in the yard with my kids – April also represents an important milestone in my life and the life of the Ulman Cancer Fund.  

Seventeen years ago this month, I was fortunate to be hired as the first full-time Executive Director of this incredible organization.  At the time, we had very little to show in regards to programs and impact, but we were a community strong and united, ready to drive change.  They still tell me to this day there were other candidates vying for the job and I was selected from the crowd, but I’m fairly certain I was the only one who applied.  At any rate, I landed the job and got to work.

I was young, naïve, and clueless but I had one of the most powerful assets you can have when you start something new – a burning desire to succeed; a story to tell; and a commitment to helping others who have experienced the pain I endured – losing a mom to cancer.  This April is particularly unique because it also marks the 20th year anniversary for the Ulman Cancer Fund.  As I reflect on the transformation and development of both Ulman and myself, I’m reminded and humbled by the incredible people I’ve met along the way who have helped us get to this point together.

Testifying in Annapolis in February 2018 with cancer survivors sharing their voice

We’ve accomplished so many great things over the past two decades – way too long of a list to include in this blog.  One special milestone that has been unfolding over the past couple of months is the result of many year’s worth of hard work and countless, brave cancer survivors sharing their stories.  

On May 8th, our team will travel to Annapolis, MD to join Maryland Governor Larry Hogan for a ceremony where he will sign a piece of legislation into law that will preserve parenthood for thousands of cancer patients indefinitely.

When the law becomes effective on January 1, it will mandate insurance companies to pay for a patient ’s fertility preservation prior to them starting their cancer treatment, which can render them infertile. This will make Maryland the 3rd State in the country to offer this important benefit, providing momentum for others states to follow suit.

After two year’s worth of meetings and hearings with legislators educating them on the importance of this bill, I am reminded of a powerful lesson I’ve learned during my time at Ulman – Your Voice Matters! Meeting after meeting, hearing after hearing, I watched as brave young men and women opened their hearts to share stories of pain, anger, perseverance, and conviction.  The tears in their eyes and smiles on their faces took me back to a place I haven’t been in many years. It took me back to the day I was alone in an office as the first and only employee at Ulman. Although I was fueled by a different experience then, I recognize so many of the same emotions that motivate these survivors now. After my mom passed away, I found my voice immediately, and I feel lucky I was able to harness it through my life’s work at Ulman.  

And so as I celebrate my 17th year at Ulman and our 20th year as an organization this April, I’m continually reminded of the power of having a voice.

Sometimes you need to advocate for those unable, or not comfortable sharing, and many times you need to do it for yourself.  

We still have so much work to do, but I’m encouraged by the progress we’ve made thanks to thousands of young adults and families who have chosen to share their stories as vehicles for hope, inspiration, and change.

 

Giving remarks at 2018 Blue Jeans & Bowties Ball

Giving remarks at 2018 Fight Night Baltimore

Cancer changes lives… SO DO WE!

 

 

 

Brock Yetso
President & CEO
The Ulman Cancer Fund for Young Adults

 

“A Dash of Destiny” – an interview with Adam Van Bavel

Name: Adam Van Bavel

Age: 38

Occupation: New Business Development Manager

Give us a little background on your life and who you are (hobbies, professional life, etc.)  

I was born and raised in Baltimore. My wife and I just celebrated our 5 year anniversary. We’re parents of one (soon to be two) little boys. As a Baltimore native, when people ask where I went to school I always respond Calvert Hall despite the fact I went to the University of Maryland and love my Terps!

I was raised in Baltimore County where I now reside, but bought my first home in Baltimore City. There aren’t many cities in the US that rival the history, urban landscape and amenities, and culture of Baltimore. I’m an advocate for our City and the opportunity that exists for improvement.

During my 38 years of life, I’ve worked in nonprofit and for profit always with a focus on social good. I’m currently the New Business Development Manager for ONeil Interactive where I work with home builders across the country to improve their digital efforts. I also manage BmoreEvents promoting social good events and causes as well as nonprofits resources.

My favorite activities revolve around spending time with my family enjoying the outdoors and working towards our goal of visiting every National Park.

 

How has cancer impacted your life?

 

My senior year of high school was 1997. This also coincides with the inception of the Ulman Cancer Fund for Young Adults. I was an active guy who played sports and lifeguarded at Beaver Dam. During the excitement of summer my senior year, I had several medical issues arise that changed my college experience.

The long and short of it was after going to the ER and a gastroenterologist I was diagnosed with Barrett’s esophagus and Ulcerative Colitis. I had polyps in both instances and the Colitis polyps were villous adenomas. It’s not often that boys in high school are diagnosed with these issues, but more often men ranging from 40-60. Of my 38 years of life, I’ve spent 20 of them having countless procedures, medications, and other treatments. I’m extremely fortunate that the polyps weren’t cancerous when they were found and my symptoms have gotten better over time which isn’t common.

I’ve escaped cancer for now, but several of my friends and colleagues haven’t. I’m committed to becoming better educated and helping to share that knowledge and the experience of cancer in young adults. I also want to make the lives of those (and their families) enduring cancer at a young age better in some way by supporting the great work of the Ulman Cancer Fund.

 

How did you get involved with the Ulman Cancer Fund for Young Adults?

 

I first heard about UCF several years ago participating in Mustaches for Kids – a month long charitable initiative that tied in facial hair. M4K occured for a time during November along with several other beard/mustache related organizations. I wanted to give exposure to them all. I was able to do so locally after reconnecting with Averil Christens-Barry. My first UCF experience was via this No Shave November blog post. That post and promoting many of Ulman’s ensuing events led to my involvement in the inaugural Game Changers class.

 

What have you gotten out of the GameChangers program?

 

Participating in the Game Changers program was an amazing opportunity. I was able to gain a deeper understanding of the work being done at UCF and serve first hand. I listened to personal stories, met patients/survivors, and experienced meaningful impact.

 

How are you blending your personal and professional life?

 

Working in the home building industry and being focused on social good has allowed me several opportunities to blend my personal and professional life. While I was at the International Builders Show I was able to meet one of the founders of Iowa Skilled Trades. The work they’re doing to address the skilled trades gap recently garnered the involvement of Baltimorean, Mike Rowe.  

 

It’s also been incredible to be involved with the completion of the UCF House!

 

Tell us about your work with the UCF House

 

It was an exciting coincidence (with a dash of destiny) that after being nominated/accepted to be a GameChanger, I found out about the UCF House. As part of my career I’m active with the Maryland Building Industry Association and their Future Industry Leaders Council. This natural alignment and the dedication of key MBIA staff and members facilitated the donation of cabinets, appliances, and their installation. A fantastic outcome from a most unexpected opportunity!

 

What do you find most exciting about the UCF House opening?

 

The UCF House not only fills the need of providing housing for young adult cancer patients and their families, but also provides a supportive communal environment just blocks from Johns Hopkins Hospital.

 

What do you want your legacy to be?

 

My hope is that the work I’m passionate about and participate in creates positive impact and inspires others. Ultimately, my goal is to raise my children with opportunities to contribute meaningfully to society. It would bring me the greatest joy to have them experience the incredible sense of progress and fulfillment that comes with service and stewardship while valuing their time doing so.

The Ulman House – It’s all in the Details

It’s been an exciting time here at the Ulman Cancer Fund since construction began on the Ulman House! In September, we began the process of deconstruction on the existing row homes in our six-unit stretch of E Madison Street in East Baltimore. For the deconstruction, we worked with Baltimore based company, Details whose workforce is made up of local people facing barriers to employment. One man we worked with grew up just blocks from the Ulman House! Besides the social impact of Details work, their environmental impact is important too. They were able to recover brick and wood from the deconstruction process that will go back into our rebuild of the property and into future construction projects around Baltimore.

This deconstruction of the property and recycling of materials helps us towards our goal of becoming LEED (Leadership in Energy and Environmental Design) certified.

LEED is a green building rating system which provides a framework to create healthy, highly efficient, sustainable buildings. We believe this is important not only for the health of our patients and caregivers but for the health of the environment as well.

One of the most exciting parts of this deconstruction process was that we were able to save the more than one-hundred-year-old facade. Keeping the original brick front was important to us to be able to continue the timeline of the story of Baltimore. The red brick row home is an important architectural staple in Baltimore and we’re happy to showcase it on E Madison Street. The bracing of the facade has allowed the dig out of the lower level to begin. Stay tuned for more updates!

     The back of the property before deconstruction

Details worker who grew up blocks from the House

Back of property during reconstruction
 The facade braced for construction to begin

Lower level dig out

Amanda’s Story

I was 23 when my life changed forever.

I know this isn’t a groundbreaking statement – lots of people graduate, get a new job, get married, or do other life-changing things at 23.

I got cancer.

I had graduated from the University of Hartford and stayed on campus to get a Doctor of Physical Therapy degree. I played Division I basketball at Hartford and was excited to go into a career related to sports. My plans were interrupted though, when a chronic health issue I’d quietly managed on my own got out of control.

For seven or eight years, I had been dealing with an embarrassing problem – gastric distress and bleeding – on and off; sometimes mild, sometimes severe. I hardly talked to anyone about it, and when doctors played it down, tried to blame it on my diet, or told me to wait it out, I just accepted what they said. I had to miss a game now and then, but overall I learned to live with it. What I realize now is that I was living with a pit in my stomach every time I would see that blood, but not want to talk to anyone about it.

During my first year in the DPT program, I got pretty sick and felt like I had to push harder for a diagnosis of some sort – that pit was telling me that something bad had to be going on. It was really hard to advocate for myself. Little did I know it was the first of many times I would have to speak up more than I felt comfortable with or make a decision I didn’t feel ready to make.

I had a colonoscopy and was expecting to hear that I had Chron’s Disease or IBD.

Nope – colon cancer. WTF.

I had been prepared to give up gluten, but I was NOT ready for moving home, putting down tens of thousands of dollars for fertility preservation, surgery, chemo, radiation, losing tons of weight, botched surgery, more surgery, hysterectomy, ostomy bag.

I also wasn’t ready for the feelings I had when I started my PT clinicals. I would go straight from the infusion room to the PT clinic, from hearing deathly ill people talk about their hopes of healing to hearing perfectly healthy people complain about how much a sprained ankle was cramping their style. I may have been the youngest person in that room getting chemo, but I felt for all of those survivors beside me and realized I wanted to give back to people like them.

After I was through with that litany of treatments and learned to live with my ostomy, I enrolled in nursing school at Johns Hopkins and a year later started working on the adult inpatient leukemia unit. I was so happy to be in a place to support these people I shared a kinship with.

But when I left work every day, I was alone. Forget dating – there was no way I was getting close to intimate with anybody with my new “companion” always at my side. No social sports or working out to relieve stress either; I didn’t think intense physical activity was an option for me anymore.

Then a friend from high school who also lives in Baltimore told me about the Ulman Cancer Fund and its Body of Young Adult Advisors. I checked it out – somewhat hesitantly – but once I was halfway through my first BOYAA meeting I knew I had found my place. These people looked and acted like me, and they spoke my cancer language. For the first time, I had peers my own age who could actually understand what I had been through, and some had even been through similar experiences themselves.

Before I knew it, I had signed up for Point to Point, and was going to have to figure out how to RUN from Baltimore to Key West. Cancer is still the toughest thing I have overcome, but this experience ended up being a very close second! The first few days, it was so hard to get through ten miles, but with Ian, Brock, and a bunch of other new friends – no, family – by my side, I managed to tick them off one by one.

I also managed, for the first time, to truly TALK about my experience with cancer. My Point to Point teammates were willing to put their own problems and priorities aside and just listen to me. Each of them had their own story, and in sharing theirs, they helped me be able to share mine, knowing I wouldn’t be judged or questioned or stigmatized or forgotten.

My life was changed forever at 23 when I learned I had cancer. And it was changed again at 26 when I came to UCF.

I know you have made a donation to UCF at some point, so in some way, you are part of my story. Thank you for giving, so that this organization and these people were here when I needed them. I know it sounds cheesy, but you have made all the difference.

As you could probably tell from earlier in my story, I don’t like to ask people for help. But I’m going out of my comfort zone to ask you to contribute again this year to the Ulman Cancer Fund. I know, without a doubt, that your support – financial and moral – will help someone else like me regain their body and their confidence after cancer.

Cancer changes lives…so do you.

Sincerely,

Amanda Weaver

The Marquarts and the Woods – BE Committed

Jim and Keri

Be Committed. The meaning ascribed to these two words can vary a great deal from person to person. In times when health and circumstances are beyond one’s control – as is often the case for young adults experiencing cancer – we are inspired by those who take these words seriously. They look beyond themselves, they get comfortable with discomfort, and they just keep showing up.

At the Ulman Cancer Fund for Young Adults, we are honored and humbled to partner with these types of people every day. Sometimes we even get to interact with an entire community of truly committed people – this is the case in a small town, three hours away from UCF headquarters, in Northeastern Pennsylvania.

Each fall for the past four years, a small group of UCF staff has piled into the car and made the trek up Route 83, gone over the river and through the woods, and arrived at the “Back Mountain” of Luzerne County, PA – more specifically, at the home of Jim and Keri Wood for Screw Cancer Brew Hope PA.

It all started because of the Woods’ natural inclination as 

Marjorie and Brian

helpers. This bent prompted them, in 2013, to introduce long-time friend Olivia Marquart – a recent college graduate newly diagnosed with synovial sarcoma – and her family to Brian Satola, Chief Operating Officer at UCF, where Jim serves on the Board of Directors. The relationship, and ultimately, the community that developed as a result of this introduction, soon made the distance between the Back Mountain and Baltimore seem inconsequential.

The Woods have always been committed to having a good time, hosting a big end-of-summer party at their home each year. Upon Olivia’s diagnosis, they saw a need and felt compelled to leverage this event into something more meaningful. They partnered with Olivia’s mother, Marjorie, and sister and brother-in-law, Samantha and Jamie, and committed to turning the lighthearted party into Screw Cancer Brew Hope PA: an awareness-building opportunity and fundraiser for UCF.

 

Samantha on Key 2 Keys

Both the extent and impact of this commitment are impossible to quantify. For four years in a row, this small group and their extended families and friends have spent countless hours on event planning and execution – spreading the word across the neighboring towns, collecting donations for silent auction items, negotiating with vendors, setting up and tearing down decorations – all toward the goals of teaching their local community to be ambassadors of the knowledge that young adults are not immune from cancer, and giving that community a tangible way to support Olivia and family throughout her ups and downs with cancer.

Through their commitment to Screw Cancer Brew Hope, the Marquarts and Woods have come together to donate and raise more than $175,000 for the Ulman Cancer Fund. Their commitment to building relationships has decreased the alienation Olivia has felt, and created stronger connections throughout their community. It has enabled the Ulman

 

Cancer Fund to expand the programs through which we fulfill our mission of creating communities of support for young adults, and their families, facing cancer.

Marjorie, Olivia, and Keri

Both Olivia and Samantha have been able to extend their communities beyond the Back Mountain through UCF’s Key to Keys program. Each sister has participated in the experience, driving or bicycling to Key West with a group of strangers who, over eight days and 1,200 miles, become family. They have created cherished memories of riding into Key West and sharing dedications with their teams, which empower them when recalled on tough days. Through Key to Keys, they have each committed to supporting their newfound friends, and have received invaluable companionship and encouragement back in return.

Margaret Mead is often quoted as having said “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” At UCF, we are so grateful for this small group of committed people, and we have no doubt that they will change the world for countless young adults well into the future.

 

Donate to Be Day https://tinyurl.com/y8btb4mz