In the summer of 1992, just before my 12th birthday, I was feeling tired all the time, didn’t have much of an appetite, and would come home from camp and tell my mom I was too tired to participate in my dance classes. She said I just wanted to get out of doing my chores.
Our pediatrician was a family friend and he was on vacation, and we figured it could wait. I went away for a weekend with my friend’s family to their lake house, and throughout the weekend had a bloody nose that wouldn’t stop. We went to walk down to the public beach a couple of houses down and I had to sit down on the way because I was out of breath. When we finally got there, I told my friend I didn’t want to go in, but I was actually afraid I wouldn’t be able to breathe in the water. As a typical teenager, she said that I was being boring, and we walked back to the house and again had to rest on the way. The bloody nose continued on and off, and by the time we got back, her mom called my mom and said she really thought I should get checked out.
We saw the pediatrician and initially he found that I was anemic, but wanted to do more bloodwork. The nurse came back with the results; he told her to run it again, but she said she had already run it 3 times. He sat us down in his office and explained that my counts should be around 13, but they were at 5. Over the next 24 hours I had more bloodwork done, spiked a fever, was sent to the ER, admitted overnight, and the next morning, July 22, 1992, I was diagnosed with acute lymphocytic leukemia (ALL).
The oncologist sat down with me and drew pictures of what my blood cells were doing to each other, and I figured, ok, I’m sick, I’ll take medication for a while, and I’ll be fine. They all thought I handled it surprisingly well. It wasn’t until a nurse hung an IV bag and mentioned “chemo” that I started to put together that chemo was what they used for my grandfather’s cancer, and that leukemia was cancer. It came crashing down on me and we had to do have the whole conversation over again.
One of the first things my doctor said to us was, “If this had been 10 years ago, I would have told you to spend a lot of time with her. But because of all the research and progress we’ve made, it’s not only a hope, but an expectation, that she’ll be fine.” I was lucky to be diagnosed when I was because I had a good prognosis and we knew it would be about 2 ½ years of treatment ahead of us, but there was a light at the end of the tunnel.
In addition to that, I was told I was a good candidate for a clinical trial in which they were testing whether the treatment would be effective without using radiation. Children were just starting to live long enough where they could see that radiation was having all kinds of longer term effects like learning disabilities and other dysfunctions, and now that they were living past the treatment there was starting to be a bigger focus on quality of life.
As lucky as I was, those 2 ½ years weren’t easy. I lost my hair, had no immune system so I often had to miss school and couldn’t see friends and sometimes even family. I had countless spinal taps, bone marrow tests, and endured the many side effects of chemo, all while trying to be an adolescent in middle school, which is hard enough in itself. Everyone is just trying to fit in and this made me really stand out. And let’s be honest, kids in middle school are just plain mean.
There were a few bumps along the way, but 2 ½ years later in October of 1994 I took my last chemo pills, and 5 years later I was considered cured.
Something that I think a lot of people don’t realize is that after you walk out of your last treatment, and even after being considered “cured”, cancer is the gift that keeps on giving. There’s a lot of mental aspects of it like survivor guilt, fear of relapse, and just having very different life experiences from other people your age, and I really didn’t deal with a lot of that until years later. There are also physical long-term effects that also may not show up right away. I’m now part of a survivorship clinic in which I’m monitored every year by my oncologist, nurse, and social worker, and we discuss any medical issues that I’ve had. They monitor me for certain known long term side effects such as fertility and heart issues, and record anything else that might start showing as common trends that other patients are experiencing so they can better address those going forward. Every appointment brings a lot of anxiety, but also a lot of comfort knowing they’re proactively trying to catch anything that could come along, and I always feel better when I get clean results back each year.
One time the survivorship program was particularly helpful was learning that I had a risk of early menopause due to one of the chemo drugs I had been on. I was able to proactively meet with a fertility doctor and freeze my eggs to give me the chance to start a family a few years later when I decided to become a single mom by choice.
When I had been away at college, I had seen a brochure for our Light The Night walk at a local store. I reached out to what was then the Delaware region and started volunteering. I always say I just kept volunteering until they finally started paying me. I started as a Team In Training campaign manager, and despite myself and my family being extremely non-athletic, I decided it would be a great idea for us to do a ½ marathon together in honor of my 10 year anniversary off treatment. It took some serious convincing, but we did complete the ½ marathon as a family, and you could say I “drank the purple kool-aid” and got sucked into Team In Training as a full time hobby. It’s now 22 years later and though I’ve held many different roles in multiple offices, I’m still working at Blood Cancer United and have completed 7 marathons, countless half marathons, and personally raised hundreds of thousands of dollars. I coach our Moms In Training group with over 100 moms, daughters, grandmothers, doctors, and survivors across Westchester and NYC. Our 2026 team takes on a bold mission to raise $1 million, and my daughter runs along with me as one of the team. It’s an opportunity to teach her and model how important it is to help others as well as to challenge ourselves to do hard things.
Stacey
acute lymphocytic leukemia (ALL)
