Survivor Squad: Emmett

NAME: EMMETT

AGE: 13

STATUS: CANCER FREE

FUN FACT: EMMETT PERFORMED MAGIC TRICKS FOR OTHER PATIENTS WHILE HE WAS HOSPITALIZED!

Thirteen-year-old Emmett is big into hockey. He started skating when he was 4 and playing when he was 6. He had hockey hair. He skateboarded. He was outside playing sports every minute he could be.

Then when he was 10, he started to feel lightheaded and fatigued. His doctor thought Emmett had a virus. But Emmett had leukemia. And not just one, either. He had two kinds of leukemia; chronic myelogenous leukemia (CML) and acute lymphoblastic leukemia (ALL). Between the two diseases, all of Emmett’s blood cells got really messed up.

Doctors first took all his blood out, cleaned it and put it back into his body again. Emmett then came to Roswell Park for chemotherapy. His hockey hair all fell out.

The chemo killed one of the leukemias, but for the other he had to have a bone marrow transplant (BMT), where bone marrow cells from a donor are transplanted into the patient so they’ll start to make healthy new bone marrow cells.

One really hard thing that can happen after a BMT is called graft-versus-hosts disease (GVHD), where the new immune cells from the donor mistakenly attack the patient’s normal cells. Emmett got sick a lot, especially in his digestive tract. He had to be on a liquid diet for months, and it took a long time for him to be able to eat normal food again.

After a lot of careful treatment, his doctors got both cancers into remission — but not for long. After 40 days, Emmett found out one of the leukemias had relapsed. After another procedure, he beat it again, and he’s now been cancer free since August 2016!

Emmett has a new perspective on life. He wants to help people now. And because of what he went through with GVHD, he doesn’t like to see food wasted.

“I couldn’t eat for so long, and just to think about other people that can’t eat, or don’t get food in other countries or continents or states, or anywhere — homeless people, poor people — it just makes me upset. I always think if you see someone like that, help them out.”

Battling cancer is really hard and sometimes completely awful. Even so, Emmett has a lot of good memories from his time at Roswell Park: the nurses, his friends coming to visit, spending time in Kaminski Park with his dad.

It was also magical — literally. Emmett would do magic for people in the hospital. One of the hospital pastors taught him. “It would make their day,” he says. “It was really nice.”

It won’t surprise you to learn that a hockey lover like Emmett loves the Buffalo Sabres. The players know him by name thanks to their frequent trips to Roswell Park — and because Emmett also got to visit the Sabres locker room, thanks to the Courage of Carly Fund.

When he grows up, Emmett wants to be either a professional hockey player or an anesthesiologist. Right now, he has a simple message for everyone going Bald for Bucks:

“Raise as much money as you can, and let’s try to find a cure!”

Survivor Squad: Kayla

NAME: KAYLA

AGE: 17

STATUS: CANCER FREE

FUN FACT: KAYLA VACATIONED IN THE FLORIDA KEYS AND PUERTO RICO TO CELEBRATE REACHING REMISSION

When she was almost 11, Kayla was mysteriously sick for two months. She noticed she couldn’t walk around New York City during a dance competition without feeling sick. First her doctors thought she had a cold or mono, and then a stomach bug. Then, on her 11th birthday, her lymph nodes became the size of baseballs. Her blood work showed that her white blood cell count was through the roof.

Kayla had a cancer called acute myeloid leukemia (AML).

Her mother couldn’t take it in. She couldn’t believe they’d gone from a stomach bug to cancer — and, it turned out, a rapid-growing cancer that occurs predominantly in men aged 60 and older.

When the doctors said they were sending Kayla to Roswell Park, “that is when it hit us,” her mom, Amanda, says. “We didn’t even know Roswell treated children. But when we got here it was like they rolled out the red carpet. They were fantastic from start to finish. They kept us calm.”

Kayla went through chemo. She had to quit dancing, which she’d been doing avidly since age 3 — tap, ballet, jazz, hip-hop, acro and lyrical. She says she got through her treatment with the support of her parents, siblings and night nurses. “My night nurses were my saviors,” she says. “They would watch movies with me, make me food; I was so very close with them.”

She also qualified for two clinical trials, which means she was able to test out a brand-new treatment before it became available to the public.

Kayla’s family celebrated her remission with a trip to the Florida Keys. Then, after two years and almost three months of remission, she relapsed.

This time she had to have a bone marrow transplant (BMT) in addition to chemo. When important cells in the bone marrow stop working, a BMT replaces them with healthy cells that get things operating again. The cells might come from the patient themselves but often have to come from a donor.

Kayla’s donor is from Germany. Since her BMT, she’s developed new allergies that might have come from her donor — including an allergy to cats, and she loves cats!

Kayla says her treatment was grueling, but once again, she got through it with the help of her family and night nurses, plus all the other kids and families she had now met through Courage of Carly Fund programs and other pediatric cancer groups.

“We can just talk about it and not feel weird,” Kayla says. “We can compare different things and talk about everything we’ve been through.”

But her true savior is the dog she got 200 days after she completed her BMT, a golden retriever named Bentley who was her reward for finishing treatment. She had to wait that long before getting him because it takes that long for doctors to be sure the new cells have locked in and started working, and the worst risks for side effects have passed. Bentley has been her best friend ever since.

Her experience has made Kayla want to go into the medical field, and she is still deciding whether she wants to be a doctor, a nurse or a nurse practitioner — the last because of a nurse practitioner at Roswell Park who had a big impact on her treatment.

Fighting cancer has changed her outlook on life, Kayla says. Due to the lasting effects of her treatment, she can’t dance now, but that’s just one small piece of the puzzle. “I am grateful for everything I have. You just don’t know what’s going to happen. Have fun with everything.”

And always remember her recipe for the best medicine of all: “Laughter, friendship and staying positive!”

 

Survivor Squad: Mashayla

NAME: MASHAYLA

AGE: 8

STATUS: IN REMISSION

FUN FACT: THIS PAST SEPTEMBER, MASHAYLA RANG THE ROSWELL PARK VICTORY BELL AFTER COMPLETING HER FINAL ROUND OF CHEMOTHERAPY!

Eight-year-old Mashayla was really excited when she rang the Roswell Park victory bell in September. She had just completed her final round of chemotherapy after more than two years of cancer treatment. She had been diagnosed with medulloblastoma in April 2015 and has been in and out of hospitals since.

When Mashayla was 5, her mom noticed that she kept falling over and had trouble balancing. A CT scan at the emergency room revealed a brain tumor. Mashayla was admitted to the ICU and prepped for surgery.

Mashayla’s doctors attacked the cancer using: surgery to remove as much of the tumor as possible, six weeks of radiation, which kills cancer cells using very strong X-rays or other forms of radiation, and nine rounds of chemotherapy, where the medulloblastoma was attacked further using strong medicine given on a regular schedule.

For over a year, Mashayla had a port for her chemotherapy. A port is a small plastic disk surgically placed under the skin that helps doctors and nurses give patients medicine — especially chemo — and draw blood for blood tests. Ports are usually placed near the collarbone. They’re a pretty weird thing to get used to, and lots of patients don’t like having one. Mashayla didn’t either. But she got through it.

Mashayla says her family and friends are what kept her going. Their visits when she was in the hospital gave her a lot of strength. She also got to have some fun thanks to the Courage of Carly Fund at Roswell Park, which offers programs to kids and funds pediatric research through donations to Roswell Park.

Mashayla loves being part of the Courage of Carly. She got to go to a Bills Game, a Sabres Game, Rolly Pollies and Build-a-Bear, where she built a Dalmatian. She really loves Build-a-Bear. She even got to go back for her birthday thanks to a gift card from the Courage of Carly Fund. Her mom is grateful for the things Mashayla has gotten to do and would like to thank all the donors who make Bald for Bucks and the Courage of Carly Fund possible. Mashayla’s school even went Bald for Bucks in 2016!

Mashayla has regular MRIs to check for cancer. Because her last two MRIs have been clean, she is now considered cancer-free. But she does need to keep having check-ups to make sure it hasn’t come back.

Mashayla loves doing arts and craft, playing with Play-Doh and watching YouTube. She’s not crazy about going back to school full time, but she knows she’ll get used to it. She just got through cancer, so school should be a breeze.

Survivor Squad: Erin

NAME: ERIN

AGE: 16

STATUS: CANCER FREE

FUN FACT: ERIN WANTS TO GROW UP AND BE A PEDIATRIC ONCOLOGIST

When she was 9, Erin loved to swim and dance. She was really into music and reading. One day, she woke up and felt like there was something in her left eye or like maybe she had a sty. Within days, it had grown into a penny-size lump, and she couldn’t see. Before Erin knew it, she was being prepared for surgery.

The surgery discovered that she had stage 1 rhabdomyosarcoma, a rare soft tissue cancer, above her left eye.

She remembers clearly the day her doctor called with the diagnosis, five days after her surgery. Her mom pulled Erin into her lap and told her she had cancer, but that they would get through it together. Erin asked if she was going to die. “We just have to stay strong, and we can get through anything,” her mom answered. Erin could barely sleep that night.

Erin’s treatment started with surgery and was followed by chemo, with her staying in the hospital for her infusion every other week for six months. Then she was cancer free for 11 months.

There was only a 2 percent chance the cancer would ever come back. But it did. It was found again when she was 11, but below her eye this time when the area below it started to swell up. She and her mom just thought it was allergies at first.

Now she had to have surgery again, plus stronger chemo and radiation.

Erin has gone through a lot for a 15-year-old, with four surgeries to put in medi-ports, two for tumor removal and two for eye reconstruction, with more reconstruction to come.

What got her through these really hard times, when she was in so much pain that she felt like giving up? Her family and friends, as well as her own optimism. The experience has changed her outlook on life:

“It forced me to see what was really important to me compared to what normal 9-year-old girls think is important, such as hair, brand of clothing, acne or a silly crush. My view of what is important is my family, friends, doctors and donors. In the long run, I will know that they are the real ones who saved my life. They were there at my worst and never left my side.”

This thoughtful young woman had others on her mind even when she was in the hospital. “When I was diagnosed the second time,” Erin says, “I wanted to make sure that no one felt so down as to just give up, which is unfortunately so common for us in the cancer world. I would go around the hospital with my IV pole asking if anyone wanted to watch a movie or even just talk to make sure others didn’t feel alone.”

Erin has been cancer-free for four years now! She is still involved in music and loves to perform on stage. She’s also very involved in sports, especially volleyball and softball. She’ll have to be watched very carefully for the rest of her life because of the chance of recurrence, but she’s going to make the most of every minute she has: “I promise that because I am still here today, I’m going to live life to the fullest!” She even wants to become a pediatric oncologist. “I want to help kids that I can relate to and help them get through it with less pain than I did.”

To everyone who gives to the Courage of Carly Fund or goes Bald for Bucks, “I would like to just say a huge thank you to the donors for saving my life. You helped bring me joy and lifelong friendships, and taught me that you can make the best out of any situation.”

Survivor Squad: Alex

NAME: ALEX

AGE: 18

STATUS: CANCER FREE

FUN FACT: ALEX LIKES TO SPEND HIS TIME FLYING SMALL PLANES

It was pretty strange when Alex started to get winded just from climbing a flight of stairs. At 16, he was an active athlete, playing soccer four or five nights a week and doing CrossFit. Even other kids’ parents could tell something was off, that he was running slower during the last soccer game of the season for the Chili Shamrocks, a year-round premier-level soccer team. It had been an extremely hot summer, so he attributed his problems to that.

Just two minutes into tryouts for his school’s soccer team about a month later, he almost passed out. He was sent right to Strong Pediatric Emergency, where blood work showed that he had leukemia — acute lymphoblastic leukemia. He was immediately admitted to start treatment at UR Medicine Golisano Children’s Hospital, where he received many blood and platelet transfusions along with intense chemotherapy right away.

He didn’t get back to school all year after that.

His doctor felt that the leukemia would be curable, at least. But Alex says, “I really didn’t know what to do. Because I couldn’t do anything to help myself get better other than just sit there and let them do what they were gonna do.”

Alex had to have chemo and a bone marrow transplant (BMT*), which also involved radiation. He tried to focus on getting from one day to the next, because the chemo and BMT left him feeling sick a lot. So he kept his thoughts on the positive. His family and thinking about the things he would do with the rest of his life got him through treatment. Another thing that helped was visits from his friends.

“A lot of kids from school came and went, visited me from time to time. A lot of people kept in contact with me through the phone and stuff. The varsity soccer team all dyed their hair blond right after I was diagnosed, so that they matched my hair color. Some even had my initials shaved into the sides of their head. That was something different I didn’t know they were gonna do. It showed the support and how much they cared about me. Everybody looks so different, but you know they did it for you.”

After eight months of treatment and isolation, Alex was declared cancer free. His body’s bone marrow is now completely his donor’s. These days, he likes to go boating on Conesus Lake and play video games with his brother. He also likes to fly. He’s a student pilot, having started with a program called Young Eagles. He hopes to get his pilot’s license one day.

Living in Rochester, Alex found out about 13Thirty Cancer Connect, a cancer support organization that brings together teens and young adults who are cancer patients or survivors. Bald for Bucks raises funds to benefit 13Thirty. Alex wasn’t sure he wanted to go to their meetings at first because he didn’t want “to sit in a circle and talk about my feelings and stuff.” But he went anyway, and “it turned out to be a blast. I met a lot of the other kids. They know what it was like to go through it, so you immediately connect.”

Having cancer has taught Alex to look at the positives in life. “You’re always gonna have challenges in your life, but just persevere, and there’s always good things that come out of everything.”

 

*When important cells in the bone marrow stop working, a BMT replaces them with healthy cells that get things operating again. The cells might come from the patient themselves but often have to come from a donor.

Survivor Squad: Emily

Name: Emily

Age: 30

Status: Cancer Free

Fun Fact: Emily loves cruises and traveling

 

Three days after Emily’s 19th birthday, she received the devastating news that she had stage 3 malignant melanoma, one of the most serious forms of skin cancer. She was given less than a 59 percent chance of surviving the next five years. In a state of shock, she felt her only options were fight or flight – to face her diagnosis head-on or to live in fear – and she chose to fight.

“My emotions just shut down, and I had to do whatever it took to get me to the next day. And then the next,” Emily said.

She faced many surgeries and biopsies, but Emily says Roswell Park really supported through her entire battle with cancer. “If it wasn’t for the nurturing care of the nurses, oncologists and surgeons, I don’t think I would have come out the other side as the same person. Roswell was more than just an institute to me. It was a home, and every part about it gave me a second chance.”

After more than a year of treatment, Emily was declared cancer-free. She doesn’t take her current cancer-free status for granted and is very grateful for where she is today. “I love to live,” she said. “It’s taken some tough times in my life to make me realize that I HAVE a life, and that life moves fast so I have to enjoy it while I can.”

Emily now enjoys traveling and exploring the world from the deck of a cruise ship. When she is not globe-trotting, she is at home playing with her three cats, Smuggie, Blue and Luna. Regardless of where she is or what is ahead of her, she continues to confront life’s challenges head-on and with a positive attitude.

Survivor Squad: Alexis

Name: Alexis
Age: 9
Status: In Treatment
Fun Fact: Alexis loves Katy Perry’s music

Although Alexis is only 9 years old, cancer has been a part of her young life for nearly three years.

It was in May of 2014 that the Lincoln Elementary School student was diagnosed with a Wilms’ tumor. The diagnosis was a tough one to hear for Alexis and her family. This type of cancer originates in the kidneys and primarily occurs in children younger than 5 years old. It also has the terrifying ability to spread to other parts of the body.
Alexis underwent surgery, chemotherapy and radiation and spent roughly a year without any evidence of the disease. In March 2016, her family got the news that nobody wanted to hear – she would have to fight cancer again.

This time, it is in her lungs.

The second diagnosis meant another round of commutes to Roswell Park Cancer Institute. Long trips from Jamestown to Buffalo for treatment are not easy, but Alexis likes to pass her time by listening to her favorite musician, Katy Perry, or even reading about the singer. She also enjoys cheerleading and when she is well enough, playing soccer. The effects of her treatment can sometimes make physical activity impossible.

For now, Alexis and her family are commuting back to Roswell Park, fighting for a second time, but the fourth grade student is far from alone in her journey. She recalls on one occasion that she returned to school to find that all of Lincoln Elementary was clad in purple – her favorite color – to show their support.

“Even the boys dressed in purple,” said Alexis with a smile.

Despite her treatments and difficulties, Alexis radiates love and joy. She adores her pets and helps care for five dogs, two cats, a guinea pig and a hamster. All of those furry friends might help Alexis prepare for a career someday, as she either wants to be a veterinarian or a pediatrician.

“I like babies and I love animals,” she said.

Her adoration for animals is far from the only thing that defines Alexis. She says that the first thing most people notice about her is her smile or her eyes – which are a unique shade of amber – but her mom says it’s her character that truly stands out.

“She doesn’t have a mean bone in her whole body,” she said. “She always tries to make other people happy. She’ll give up things just to do that.”

It’s no surprise given her bubbly attitude and kind disposition, but Alexis says that she makes friends easily and loves to spend time with them.

The young fighter, along with her family and her doctors and nurses at Roswell Park are doing all they can to get Alexis back to cheerleading, soccer, her friends and a happy, healthy childhood.

Survivor Squad: Ra’Quan

Name: Ra’Quan
Age: 20
Status: In Remission
Fun Fact: He is a member of the Men of Merit

When Ra’Quan was 12 years old, he did not understand what having cancer meant, so when his mom told him that he had a bone tumor, the severity of the situation did not immediately strike him.

That was in 2009 and at the time he was a seventh grade student. One of the difficult realities of cancer for Ra’Quan was being forced to take a full year out of the classroom to be homeschooled while he underwent treatment. Like many kids would, Ra’Quan initially enjoyed a break from classes. Soon, though, he began to miss his friends and feel bored and isolated at home.

Ra’Quan did not miss an academic beat, keeping up with his schoolwork during treatment. Despite that, homeschooling was simply not the same as having friends by his side as he faced his fight against cancer.

When he returned to school, he was not the only one who was excited.

“I got a big reaction from my classmates when I walked back into class,” he said.

Although the moment was joyful, Ra’Quan still had challenges to face as a result of his cancer. Lasting side effects caused him to miss more school, including dealing with a broken arm as a result of his weakened bones.

Everyone deals with the challenges of cancer differently, and Ra’Quan found inspiration and happiness in the music of his favorite artist, 50 Cent.

Cancer disrupted his adolescent years, taking away the carefree nature of that time that most children are able to enjoy. Despite these obstacles, he was able to graduate from Middle Early College High School with his classmates.

He was also able to discover Camp Good Days – a camp for patients and family members whose lives have been touched by cancer. While there as a camper, Ra’Quan said it was comforting to meet other children going through similar experiences. Last summer, he returned as a counselor and gained insight into the struggles family members face as well.

During his adolescent years, Ra’Quan didn’t just learn about cancer. In a way, cancer helped him to learn more about himself.

“I think I matured a lot and I think I became a lot nicer from that experience,” he said.

Ra’Quan recently graduated from Erie Community College with a degree in general studies. He hopes to pursue a career in fashion design and merchandising and says that one day, he wants his name to be on everything he wears.

He now lives by the motto, “Adversity breeds champions,” as his childhood battle led him to be a stronger adult.

Survivor Squad: Hank

Name: Hank
Age: 8
Status: Treatment completed
Fun Fact: Hank loves to learn about history

Hank was 7 years old when he was diagnosed with a stage IV Wilms’ tumor last year.
The tumor started in his left kidney – all Wilms’ tumors begin in one of the kidneys – and by the time it was found, it was the size of his head and had spread to his abdomen and both lungs.

“His first lung CT scan looked like Swiss cheese from all of the growths,” said his mom, Christine.
The whole family was scared, including Hank.

“It was shocking,” said the third grader. “The first thought that raced through my head was, ‘Am I going to live?’”

Treatment was extensive and included 33 weeks of chemotherapy, two rounds of radiation and a big change in routine. Hank was forced to leave school for almost a year, but while we was out he kept up with all the same work as his twin sister.

Hank found ways not to be intimidated by his diagnosis. Although he is young, he knows about and understands exactly what is going on with his diagnosis and treatment. Being informed helps Hank to feel more comfortable.

“I ask a lot of questions because I like to know what’s going to happen to me,” said Hank.

“For him, fear of the unknown has been harder than reality,” added his mom.

He also did his best to maintain a positive attitude, no matter the circumstance.

“I think there’s one main thing that helps and it’s basically, just be positive,” he said. “I wasn’t always good at that, but I think it helps.”

He battled the boredom that sometimes accompanied treatment by reading a great deal, including the biography of fellow cancer survivor Mike Lowell, a Boston Red Sox player who was named Most Valuable Player of the 2007 World Series.

When Hank returned to his school, some things went back to normal, but there were still challenges. As he walked around school, he often found other students looking at him.

“When I walked the halls, I usually got a lot of stares from other students because I was bald,” he said.

Enduring the looks wasn’t easy, but he leaned on his friends for support, especially his best friend whose mom is also a cancer survivor. Having a friend who understood what having cancer really meant – from losing his hair to the severity of the situation – made Hank feel more comfortable.

His hair has since grown back, but the young patient is not out of the woods just yet.

Wilms’ tumors have a high rate of recurrence especially in areas like the lungs, and while Hank has finished treatment, it will be five years without a recurrence until he has achieved remission and 10 years until he’s considered cured of the disease. The elementary school student will be a high school graduate before that day comes.

Hank is already looking beyond that time and thinking about what he might like to be when he grows up. He’s considering being a librarian or a law professor like his parents, for the time being.

Despite the long road Hank and his family must endure to get to that time, having Roswell Park as his partner in this fight has given him strength and hope.

“I think that Carly’s Club, which is devoted to helping kids with cancer, was a great help. I wasn’t bored and I had something to take my mind off of being scared,” he said. “I think I was very lucky to have such a great team of doctors and nurses.”

Survivor Squad: Cat

Name: Cat
Age: 23
Status: In treatment
Fun Fact: Cat’s dog, Belle, keeps her company when she isn’t feeling well

Cat is 23 years old, a graduate student, a dog owner, an academic fraternity member and much more. Nothing can slow her down – not even a cancer diagnosis.

On April 21, 2015, she was diagnosed with acute lymphoblastic leukemia at the age of 22. She was in her second year of pharmacy school at the University at Buffalo, which she said is the hardest year in the program.

“I had just been feeling really sick for a while. It’s not like me to be sick and not get better like that,” she said.

She consulted doctors several times about her health, but her concerns were dismissed until a blood clot lodged in her left leg. When it began to swell immensely, Cat sought emergency care and there was no getting around the fact that something was seriously wrong.

The testing that followed concluded that her illness had, in fact, been caused by leukemia.
While most cancer patients feel devastated and scared in the moments following a diagnosis, Cat had a less-than-common reaction – relief. After feeling unwell and seeking answers for so long, it was good to know what was wrong and what steps could be taken.

She made the difficult decision to return to her hometown of Rochester to be close to her parents while she received treatment at the Wilmot Cancer Institute.

While in Rochester, Cat found an additional support system in 13thirty cancer connect which helps teens and young adults through their cancer journeys. She participated in a fitness program there and said that seeing other young people working toward returning to their “normal” lives was a great help to her.

Despite having her family and new-found friends by her side, battling cancer isn’t an easy task.

Cat spent 30 days in the hospital to receive treatment and then returned to Buffalo as a part-time student. She did not stop moving toward her goal of graduation, and now takes oral chemotherapy while continuing her studies at the University at Buffalo full-time.

She’s learned a lot of lessons outside of the classroom, too.

“I’ve really taken the time to think about what makes me happy,” she said.

To her, that means taking the time to give back to others. She began participating in the Light the Night Walk, which supports the Leukemia and Lymphoma Society. In addition to participating, she tries to raise awareness about the event through her social media.

Although she is still being treated, Cat does not dwell on her cancer.

These days she focuses on keeping her grades up, pampering her new pup Belle, spending time with her boyfriend and making sure that she is staying both happy and healthy as a student and a cancer survivor.