Category: Young Advocate

I am fortunate to say that I had great health as a child and teenager. My parents would only serve me fresh organic food and make sure I took my vitamins every day. I had so much energy and always stayed active. It was not until halfway throughout college that I got a sense of what health complications really looked like; my life completely turned upside down.

It all started in the beginning of my sophomore year. The second semester something frightening happened to me. I started to experience unforeseen anxiety, developed rashes all over my chest and back, and had night sweats which caused me to wake up in damp pajamas in the middle of the night. I knew something in my body was not right. It was not until a lymph node the size of a golf ball popped up above my collarbone during one of my Spring semester night classes that I started to become very concerned. I was very confused and immediately dismissed myself from the room, went to the lavatory, took a photo of myself in the mirror and sent it to my mother. She suggested I go to the medical center on campus.

After taking blood tests and receiving the reports back, I was told that nothing was wrong and I was told that my body was probably fighting off a virus. They had suggested I visit an ENT at home just to make sure I was okay. During my visit with this doctor, I went through a series of exams including: a nasoendoscopy, MRI, and fine-needle biopsy. The results: negative, negative, and negative. Even my internist said there was nothing wrong with me. I thought this was peculiar. I let my fears release themselves as I complied to the medical professionals.

Still, deep down I knew something was wrong. My parents agreed. I figured it would be a good idea to get further testing before going back to school and traveling abroad for a semester with my classmates. I went to another ENT and was told within seconds that the size was abnormally large and that the area it was in was concerning. He said I needed to go in for surgery, that I could not let it wait any longer. Although I was afraid to go under the knife and risk other complications, I knew that it was the best thing for my health. I scheduled a biopsy, and a week later my pathology report came back positive. I was diagnosed with Hodgkin’s lymphoma the first week of what was supposed to be my junior year of college and had to start chemotherapy right away. I was 19, and was not ready for this battle. Just a few days after I turned 20, I started treatment, and ended it in the beginning of 2018.

It took a long time to process everything, but with time, I realized that cancer was my greatest blessing.

It happened for, not to, me. Although I knew that it was going to be the most challenging time of my life, I used this season as an opportunity to discover who I was meant to be on this earth. Through faith, I learned how to persevere. And with time, I embarked on a journey to help others see the purpose behind pain.

It did not come easy, but when I finally started to fight my fears and slowly share my story with friends and then strangers, I was floored by everyone’s encouragement. I knew I had to impact and inspire a wider audience. I then made the decision to share my unique perspective and wisdom. I embarked on an initiative and decided to write a book, Power to Persevere: Inspiring Stories to Help You Get Through Challenging Moments. It was just published in December 2019.

I knew deep down that we all face hardship, so I decided to share stories on how others have dealt with cancer, whether they lost someone from it or were diagnosed with it, limb loss, substance abuse, depression and anxiety, and homeless in addition to my personal experience.  I also share advice from health professionals, life coaches, spiritual directors, and other certified professionals. I also include little reflection questions that I asked myself throughout treatment and a space in the back to write and author the new story you want to share about your life.

Here are some of the tools that helped me:

Acceptance

Becoming Vulnerable

Praying and meditating

Learning how to fuel myself through food

Creating affirmations

I am making it my mission to be the person who I wish I had to look up to during my fight to life.

I want others to remember one thing: your life is worth living. I always think to myself, “If I can beat death, I can do anything.”

And the truth of the matter is, anyone can do anything. Remember, challenging moments are meant to mold and shape you. In order to grow, you have to go through pain. It is when you start to believe and trust in the pain that you will persevere.

Allison Rosen was born and raised in the beautiful state of Texas and is a loyal graduate of Texas A&M University. She is your typical young adult who loves sports, animals, hanging out with her friends, and volunteering her time for a good cause. She has worked in the world of Oncology researching at Baylor College of Medicine for over 11 years. Last year, she decided to move into cancer education and prevention for the underserved population. She is still at Baylor but works in the Dan L. Duncan Center in the Office of Outreach and Health Disparities. On June 7th, 2012, at the age of 32 after years of struggling with Crohn’s disease her life was turned upside down after a scope with her GI doctor, when she was diagnosed with Stage 2C colorectal cancer. She had been having some weird bowel symptoms for about a month but had put off her routine yearly scope because she was too busy. Cancer was the last thing on her mind. It wasn’t until things got to the point that she thought she had some sort of blockage in her small intestine that she scheduled her scope and that blockage turned out to be a 13 cm tumor.

She had combination radiation/chemotherapy, surgery to get a J-pouch and then chemotherapy Unfortunately her treatment, which she could write a novel about, and the healing process has been a very bumpy road with complication after complication that resulted in her having her ileostomy recently made permanent in December, 2016. Her goal now is to get back to the best quality of life possible and figure out what her new normal is now.

All this craziness she has experienced the past few years has helped her realize a new mission in life; to help others and spread awareness about young adult cancers. She volunteers her time and is a part of the Young Adult Advisory Council and the Patient and Family Advisory Council at MD Anderson, is on the Steering Committee for MD Anderson’s annual Survivorship conference, serves on the Ostomy support team for MD Anderson, is on the Never Too Young Advisory Board with the Colon Cancer Alliance, is an Ambassador for Figh Colorectal Cancer, and is the Chair of the Get Your Rear in Gear 5K in Houston with the Colon Cancer Coalition.

These along with various other opportunities with National Coalition for Cancer Survivorship and American Cancer Society-Cancer Action Network and other organizations have allowed her to talk to politicians on Capitol Hill about various initiatives that were patient centered. Her passion for volunteering turned into a more personal mission, and every day that she can help someone endure the struggle of his or her own cancer journey gives Allison a wonderful sense of accomplishment.

I’m Neal. I’m 18 years old, and I’m a high school senior from Dallas, TX. One of my favorite things in the world is uncontrollable laughter. From messing up a note on my trombone in jazz band (womp womp), to flipping into the lake during a morning row, I can find myself laughing about a lot of my mistakes, foibles, and experiences.

Yet, cancer was different. As a sophomore in high school, I was diagnosed with Hodgkin’s lymphoma. It really wasn’t a laughing matter. Treatments, appointments, and side effects made my treatment difficult. I tried my best to keep up with my schoolwork, too, which added even more stress. And what also didn’t help was I rarely encountered any teenagers; every time I came in for an infusion, they had request for a longer bed because I towered over the other younger patients. It was a little amusing, but it made me feel even more lonely.

Eventually, I went into remission, thanks to the work of my amazing doctors and nurses. And thanks to the love and support of my family and friends, and the guidance of my teachers and mentors, I transitioned back into my daily routine. I’m very grateful that I had all of these resources in place to help me back up after such a difficult moment in my life.

I know there are a lot of patients who don’t have the same resources to overcome the challenges of teenage cancer. Teenage cancer patients are a unique group— we’re changing from children into adults, each at a different stage in that process. Adolescent and Young Adult Care is especially important for patients with cancer diagnoses. With our unique circumstances and situations comes unique stressors. As a patient, I was in an awkward place: I didn’t want to be treated like a baby, but at the same time, I wasn’t ready to be treated like an adult either. But at the time, I really couldn’t articulate this feeling.

When I came across Teen Cancer America, it felt like someone had read my mind. The work that TCA does across the US means so much to me. As a Young Advocate, I’m striving to contribute to this positive change in AYA Care. I hope to become involved in bringing teen-oriented resources to my local hospital and beyond.

It was hard to even break a smile as I was being treated. As much as I appreciated the activities in the pediatric ward, they really weren’t for my age group. I was isolated, detached, and just sad. But I know now that we can improve the experiences of teenage cancer patients. I want to do just that.

Rhabdomyosarcoma: Kaitlyn’s Story

Kaitlyn is an ambassador for the 2018 Parkway Run and Walk, and is one of the most positive 16-year-old girls you will ever meet. She lights up the room with her beaming smile and is a kindred spirit to so many, easily making friends wherever she goes. You wouldn’t know she has spent the past year fighting for her life.

At age 15, Kaitlyn went for a routine checkup with her pediatrician. At the appointment, they noticed a lump on the roof of her mouth. It didn’t seem too out of the ordinary, and it was thought to be related to her orthodontics. Her pediatrician sent her to see her orthodontist, who identified the lump as unrelated to her braces. As a final precaution, the pediatrician recommended she go see an Ear, Nose and Throat (ENT) specialist.

The ENT surgeon diagnosed the issue as a fairly common, benign growth called a papilloma and scheduled surgery. On July 7, 2017, the mass was removed and sent for testing. Just days later, on July 13, Kaitlyn’s mom, Dori, received a phone call and a devastating diagnosis. Three pathology reports had confirmed that Kaitlyn had rhabdomyosarcoma, a soft tissue sarcoma — a cancer of skeletal muscles that occurs in children. Her ENT surgeon referred her to CHOP.

Understanding cancer treatment

Children’s Hospital of Philadelphia (CHOP) called the family right away and within hours they were meeting with Richard Womer, MD, a pediatric oncologist, to discuss what this diagnosis meant for their daughter.

After the meeting, they scheduled an MRI and a PET CT scan to determine how best to move forward. Chemotherapy and proton beam radiation were both part of the treatment plan.

Following the initial 3-month phase of her chemotherapy regimen, Kaitlyn began radiation treatment at CHOP’s Pediatric Proton Therapy Center, which is run in collaboration with Penn Medicine. During radiation, Kaitlyn turned 16 and spent her 16th birthday in treatment. Kaitlyn’s mom recalls the prep for the proton beam treatment — “It was heartbreaking to see her in the radiation mask. It covered her whole face to ensure she kept perfectly still during treatment. She, of course, handled everything with poise,” says Dori. “Listening to New Kids on the Block really helped me through the radiation treatment,” shares Kaitlyn. Her chemotherapy continued during the radiation.

A rocky road to recovery

The treatment path was not short of obstacles. In addition to the 10 months of chemotherapy and 28 days of radiation, Kaitlyn was hospitalized twice due to side effects from the treatment. These 17 extra days in the hospital were hard on the family, but Dori and her husband, John, were determined to be by Kaitlyn’s side every step of the way. John would drive to CHOP each evening after he got off work, spend the night at Kaitlyn’s bedside and Dori would arrive in the morning so John could go back to work for the day.

In addition to her parents’ support, Kaitlyn’s sister, Morgan, was there to offer encouragement every step of the way, especially when Kaitlyn began to lose her hair due to treatment. Morgan would give her a friendly head rub and tell her how beautiful she looked, and how soft her head was. Another beacon of support during Kaitlyn’s treatment was her grandmother, a retired oncology nurse, who never missed an appointment.

Remaining positive and making friends

Despite the rough road, Kaitlyn handled the situation with grace. She remained upbeat and positive, even during the roughest patches. “She is very, very strong. And always keeps a brave smile on her face. I’m sure she was scared, but she punched through it,” says Dori. “Even when I would say, ‘I just wish this wasn’t happening to our family’, Kaitlyn would remain positive and would respond with: ‘I don’t … because then someone else would be feeling the way we do,’ ” shares Dori.

Kaitlyn made friends with other children in the hospital and was always there to offer them support. Even after her treatment was over, Kaitlyn made the trip back to CHOP the next day to see her friend ring the bell in the waiting room, signaling her last day of radiation therapy.

Nothing keeping her down

Kaitlyn has relied on her hobbies to keep her mind off the treatment. Strumming her banjo and working on her golf swing kept her mind focused on better days ahead, when she would master playing John Denver’s Country Roads and be able to hit the green with her dad for a round of golf.

In December, Kaitlyn and John traveled to New Orleans to see her favorite football team — the Saints — play, and she happily describes the great food she had. “I tried beignet Lindt chocolate, and chicken and waffles. All of the food looked amazing although, I didn’t taste a lot of it because the radiation treatment made it painful,” she says. “I really hope to go back someday when my taste buds improve and try more, even crawfish!”

In the meantime, she remains upbeat, helped by her team at CHOP. “We’ve had a great experience at CHOP,” says Dori. “Everyone is really friendly. The nurses and Dr. Womer have been very diligent with all of the exams and making treatment as smooth as possible for Kaitlyn.”

Now that Kaitlyn has been out of treatment, she wakes up at 4 am everyday to go to the gym before school. When she gets home from school, she then goes to boxing class. She is currently working on her book about her whole experience with cancer. 

Even though Kaitlyn is busy, she still keeps up to date with all her friends at CHOP. While she was in treatment, Kaitlyn created something called teen group. teen group is held every Wednesday in the teen room located on the oncology floor. During teen group volunteers from Hoel In The Wall Gang do projects and arts and crafts with patients while they wait to be checked in. Kaitlyn came up with this idea because the playroom(for the little kids) always had projects, and all of the older kids were in the waiting room. The group is a great way for patients to meet each other and a safe place to share their thoughts. Kaitlyn only has to go back for check ups now, but teen group is still being held. 

She is super into WWE, and watches wrestling every night. If she is not watching wrestling, she is listing to podcasts, and studying every part of the business. She met Dana Warrior, Stephanie McMahon, and The Big Show at the gala for the Still Strong Foundation. She stayed in contact with Dana, and they became really good friends. For her Make-A-Wish, she chose to meet The Miz. Her and her family went down to The Wells Fargo Center, and had an AWESOME! time. 

Currently, Kaitlyn is a senior at Lower Merion High School and is getting ready to graduate. She is going to The University Of New Orleans next year to study sports medicine. 

Today, David has several dreams; to publish the light-hearted book he wrote to help children dealing with cancer and treatment, snorkel the Great Barrier Reef, become a Marine Biologist, and to find a cure for cancer.