About Me

Bradley and I at a Stony Brook Football game. Bradley is currently battling relapsed ALL and is one of the bravest boys I know.

Bradley and me at a Stony Brook Football game. Bradley is one of the bravest boys I know.

fave taylor at survivor day

Taylor and me at Survivor Day.

Doctors diagnosed me with a very rare craniofacial abnormality known as Crouzon Syndrome when I was born. Although presently incurable, I spent what felt like my entire childhood visiting doctors, managing symptoms and undergoing major surgeries to correct deformities. At the young age of four, during one of my many hospital stays, I shared a room with a little girl named Alana. Alana was being treated for a brain tumor and we became instant friends. I remember us playing together and trying despite our challenges and life’s curveballs to just “be kids,” regardless of our whereabouts.

Alana had no hair, no lashes or eyebrows, and I had a very swollen face, blood-saturated bandages, stitches and staples; but neither of us questioned our appearances or asked any questions. Quite simply, we saw each other for what was on the inside, and not the outside. During the few years that followed, Alana and I and our families remained friends inside and outside of the hospital.

And then one lazy Sunday, I was lying in bed with my parents when the phone rang. The room got instantly quiet and I saw the tears streaming down my mother’s face. Alana had died. My friend. My roommate. The little girl who never judged me or my differences, when so many other kids our age had teased and tormented me to the point of tears, was gone.

At seven years old, I did not really understand what that meant but; that moment, that phone call, my parents squeezing me so tight I thought I would break in half, has stuck with me for the last 25 years. Call me crazy, but I truly believe Alana and the special friendship we shared contributed greatly to the person I am today.

Where I Am Now

cole painting

Having fun painting with Cole.

So who am I? I am a young woman who took my very difficult and medically fragile childhood and found purpose and meaning in a career that enables me to use my personal experiences in the hospital setting to help other children, who like me, did not ask for this journey. I am a Certified Child Life Specialist in the Pediatric Hematology/Oncology unit at a Children’s Hospital.

As a Child Life Specialist I spend my days working with children battling cancer and their families; educating them on their diagnoses and symptoms in ways they could relate to and understand, supporting them through their rigorous chemotherapy and radiation treatments, celebrating milestones with them and conquering the demon known to us as childhood cancer. When I tell people what I do, their first response is always “Wow, that must be so hard, I would never be able to do that.” I love my job and I wouldn’t trade it for the world. But there are times when I think “I hate my job” and that is because I cannot fathom why innocent children have to die.

In my line of work, there is no way to avoid death. Unlike a nurse or a doctor, my job is less about dispersing medication and more about knowing what these kids’ hopes and dreams are, their best friends names, their favorite food and favorite color, what scares them and what I can do to help calm them down, how their brothers or sisters feel about what’s happening to their family, the never-ending guilt that their parents feel on a daily basis (“is this something I caused? Did I catch it early enough? Is my child going to beat this”?).

I see first hand the debilitating effects that cancer can have on a child & family. It’s not all rainbows and butterflies, and it’s surely not always easy, but I believe I was born to help these children. So on the saddest of days, when I question my career path, I remind myself why I’m doing what I do. I am changing lives, creating happy memories for these children and families during the hardest battle one could ever face.

My Mission

Me & Rachel, an Ewing's Sarcoma survivor

This is Rachel, an Ewing’s Sarcoma survivor.

Cancer has affected me and those close to me for as long as I can remember. It continues to affect me every single day as I work so hard to make my little warriors and their families smile through the tears, cherish every moment, fight back, celebrate and most importantly, never ever give up.

While many people in my field say goodbye to families when they leave the hospital, I continue to build upon the relationships I have made with families whose children were taken too soon. I have seen and experienced the true love and pain of losing a child to cancer. They forever leave an imprint that is etched on your heart.

I have stood in amazement watching their strength and courage as they face each challenge. I weep and pray for better days. I remember forever how these children and families have changed me as a person. I know they were meant to be a part of my life if even for a short time. No matter how much you try to distance yourself to shield yourself from the pain, you can’t. These are the children that need you the most. All those in my life who have been affected by cancer inspire me and now I have decided to do something MORE because of them.

special-events

This is me with patient Zachary heading to the Baseball Awards Hall of Fame Dinner in NYC.

I want to help spread awareness for LLS and childhood cancer as a whole, a cause I really believe in.

I want everyone to know about the incredible advancements that have been made and the critical research LLS is continuing to fund not only for blood cancer, but for all cancers. Critical treatment innovations have originated through blood cancer research- radiation, chemotherapy, stem cell transplant and new-targeted therapies.

Nearly 40% of all FDA cancer drugs in the past decade were for blood cancers. Many of these drugs are now being tested for use in other cancers such as: solid tumors, breast, skin, stomach, bladder, brain, prostate, liver, colon, ovarian, kidney, pancreatic, head & neck, lung, and esophageal cancers. Today, several blood cancer drugs are also approved for trials with other serious diseases including: Type 1 Diabetes, Sickle Cell Disease, Alzheimer’s, Lupus, MS, and leprosy.

Leukemia & Lymphoma Society’s MissionPrint

Childhood Cancer Statistics:

– Each year approximately 13,500 children are diagnosed with cancer in the US with leukemia & lymphoma being the most prevalent forms of cancer in children, representing over 1/3 of that number.

-In 1964, a child’s chance of surviving acute lymphoblastic leukemia (ALL), the most common form of childhood leukemia, was 3%. Today more than 90% of children survive. But, we are still not at 100% so there is still work to be done!

-Leukemia is the leading cause of cancer death of children and young adults under the age of 20.

Stats on The Leukemia & Lymphoma Society (LLS):

The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health agency dedicated to blood cancer. LLS’s mission is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families.

Some Facts

-Every 3 minutes someone is diagnosed with a blood cancer. Every 10 minutes someone dies.

-Since the early 1960s, the survival rates for many blood cancer patients have doubled, tripled or even quadrupled thanks to research and access to better treatments.

-Nearly 40 percent of new cancer therapies approved by the FDA between 2000 and 2013 were first approved for blood cancer patients.

-Multi-drug chemotherapy and stem cell transplantation was first successfully developed for blood cancer patients.

How Your Dollars Are Used

Research

To date, LLS has invested more than $1 billion in research aimed at helping all blood cancer patients live longer, healthier lives. We will continue to support research through our innovative and integrated funding programs, until every patient has a safe and effective therapy. In 2015, LLS invested more than $66.9 million in research and supported more than 277 research grants in the U.S., Canada and seven other countries.

Patient Services

LLS provides a range of services, such as family support groups, an extensive educational website, free seminars and conferences, direct patient financial aid and co-pay assistance. In 2015, LLS distributed more than $48.1 million in patient co-pay assistance.

Education

LLS serves as the world’s foremost source of information on blood cancers including our Information Resource Center, an extensive collection of free educational materials, professional education and an award-winning website.

Advocacy

LLS’s advocacy program has a strong voice in Washington, DC representing the healthcare and medical research interests of patients and their families to policy makers at all levels of government.