Thank you for taking the time to read my story. As you may know, I am a candidate for the Leukemia and Lymphoma Society’s Woman of the Year. My team's goal is to raise 50,000 dollars for cancer research.This goal will allow me the honor to link my name to a research grant.
"She has between 1 and 5 years to live."
...and then along comes Mary
“Your child has cancer” - four of the most devastating words a parent can hear. Devastating doesn’t even come close to how it must feel, but I wouldn’t know because I’m not the parent. I am the daughter of the parents who had to hear those life-changing words. I am that child with cancer. I am no longer a child, though. I am now 24 years old and have beaten my enemy because of committed doctors, amazing family and friends, and cancer research. This is my cancer surviving story.
I was born a healthy eight pounder. Around age two, my parents noticed my growth beginning to slow, a decrease in my appetite, and frequent low grade fevers. The day they discovered a huge mass in my abdomen, I was rushed to the doctor’s office and quickly admitted to the hospital. That was the day my life - my whole family’s life -changed forever. My spleen was growing because it was filling up with white blood cells and wasn’t doing the job a spleen should do-filter blood. From there I had a blood test that revealed my white blood cell count – a whopping 525,000. A normal white cell count is 5,000 – 10,000. Chronic Myelogenous Leukemia (CML) was the diagnosis. CML is a blood cancer found mostly in older adults, but there it was, present in my two year old body.
Looking through our old photo album with my mom, she points to the above photo of me with my older sister Jamie. My mother tells me "that was the night before your diagnosis." The next page of our family photo album shows me in the hospital with the white teddy seen in the second photo. From there is the photo of me with my pediatric oncologist Dr. Ruki. It was chilling to see the story of our photo album. Healthy baby, energic toddler, who slowed down into the tired little girl you see in these photos.
After a few weeks, my health was stabilized enough to go home. Once my parents were comfortable giving injections of alpha Interferon, we were discharged from the hospital to begin living our “new normal” life. The Interferon would keep the disease in check for a short period, but only a bone marrow transplant (BMT) would get rid of the leukemia permanently. Unfortunately, my age, combined with the advanced stage of my disease, made a BMT a risky procedure, with an estimated 5 – 10% chance of survival. With that, my parents faced their next challenge. Should they do a bone marrow transplant? The transplant was, at the time, the only chance at eradicating the leukemia, but it was very risky and could prove deadly. My parents made the decision not to go through with it. The doctor in charge of transplantation told my parents, "You can't come back and change your mind when it's too late", but both my Mom and Dad felt very strongly they were making the right decision. At the time, they had no idea of the outcome of their choice. It was a good one-Like-really good.
Over the next seven years, I had to take a lot of medication, including one that delayed my overall development. Seventy shots in my legs every month wasn’t my cup of tea, but my parents made sure I got a toy or a treat after, and that helped me through. I remember a time when I was around 4 years old, the doctors and nurses were trying to draw blood from a central line implanted in my chest. (I thought it was called a "lion"). They were holding me down as I screamed, until it got to the point when I was fed up! I said “I’m not crying because of the lion. I’m crying because you’re holding me down!” The doctors stopped, looked at each other and continued without holding me down. Glad we all could be on the same page.
First day of preschool, Just hanging out with my sister Jamie at the doctor's office, Finally tall enough to ride Space Mountain at 8 years old
During this time, I experienced some normal childhood events...like Kindergarten! Who knew? No, really. Who knew I would make it to kindergarten? I was placed in a speech class since the medication made it hard for anyone but my sister Jamie to understand me. All this cancer business made a girl tired so I had a bean bag chair in my kindergarten-third grade classrooms where I could go take naps during class. Sometimes, I would sleep through the whole day, but I fought on and kept getting stronger.
The "Make A Wish Foundation" gave me and my family the opportunity to see my grandparents that lived in New Orleans and New Hampshire. My parents picked out my wish for me since I was too young. They wanted me to meet our far away friends and family just in case I didn't defeat the odds. I am grateful for all the unexpected trips that
followed my wish.
Jumping ahead to 1999, my parents heard about a Phase 1 drug trial from an online pediatric cancer support group. While we had been battling CML with Interferon and chemotherapy, Dr. Brian Druker was battling the disease in a new way, toiling away in his laboratory to develop an oral medication targeting the very gene translocation found in CML. It was around that time that the Leukemia & Lymphoma Society stepped in to help Dr. Druker get his revolutionary approach approved for Phase One clinical trials.
We were very fortunate that I was approved to be part of the trial - one of only a handful of children who got to participate. We were so hopeful, since this drug could end the dreadful seventy shots in my legs each month. The very successful, life saving medication, then called STI-571, eventually became Gleevec, literally turning the world of cancer treatment on its head. My mom and I flew to Portland, Oregon to meet Dr. Druker, and about a month after, I was able to take my first dose of the drug. My mom and I lived in a hotel by the hospital, even celebrating my 11th birthday with the hospital patients and staff. Once they determined the correct dosage and established that I could tolerate the drug, I was able to go back home to our overjoyed friends and family.Two months later, we returned to Portland for a bone marrow biopsy to determine if the drug was effective. We waited for the results and were overwhelmed to hear that I had gone from being 100% positive for leukemia in every one of my cells, down to 2% (that's not a typo). After eight months of taking Gleevec, the disease was undetectable, even with the most sensitive of tests. I was considered CANCER FREE! (No big deal).
I am the living proof of what cancer research has done. Because of cancer research, and my wonderful doctors, I am able to live a life that no one ever thought was possible. I have had more birthdays than anyone would ever guess. The little girl who was not expected to make it much after eight years old, is now a healthy 24 year old who has a job, goes to college, achieved a teaching permit and even has an amazing boyfriend who stands by her side in sickness and in health. I have been asked before, Mary, if you had the choice would you go back and live your life without cancer? Tough question-Truth is, no. I would not have met the friends and doctors that mean so much more to me than cancer. I certainly would not be writing this story in hopes for donations. According to the Leukemia and Lymphoma Society, "about 5,920 people in the United States are expected to be diagnosed with CML in 2013," but then...along comes Mary, with a commitment to fight for those people diagnosed with other blood cancers and lymphomas. I invite you to join me in this fight. Thanks to Gleevec, someone diagnosed with CML now has the same life expectancy as someone without cancer.
If I reach my $50,000 goal to link my name to a cutting-edge research portfolio, The Leukemia & Lymphoma Society will give 100 percent of the $50,000 to my selected portfolio. I want there to be more stories like mine. I want there to be children who are able to grow into adulthood, go to college, get a job, get married, whatever their dreams may be.
LLS funded drugs like Gleevec, Sprycel, Arinza, Tasigna and Zolinza are now being tested for patients with other non-cancerous diseases like Diabetes, Rheumatoid Arthritis and Multiple Sclerosis.
All donations are greatly appreciated and are tax deductible. They'll not only support LLS research but patient services, advocacy, public and professional education, and community services as well.
Please visit my Web site often and bring friends who would also like to donate. I can accept donations starting March 6, 2014! The winner will be accounded May 17, 2014!
On behalf of blood cancer patients everywhere I thank you for your support! For more information about LLS, please visit www.lls.org