Diane Balistreri of Hartsdale, NY, recalls her diagnosis and treatment for acute myeloid leukemia -- without a doubt the most difficult experience of her life.
“Hola,” I said playfully, as I answered my cell phone on a beautiful Saturday -- April 21, 2012.
“This is Dr. so and so. I’m calling because your blood work from yesterday is all out of whack.”
“What do you mean, ‘Out of whack?’”
“Your white blood cell count is high,” he said.
“It's at 63,000.”
“And what's it supposed to be?”
In that moment, while at a barbecue with friends, I knew that I had leukemia. I uncharacteristically fell apart crying, saying, “This can’t be happening to me!” He said specialists were waiting for me at Westchester Medical Center and that I needed to get there immediately. So with just the clothes on my back, I checked into the hospital to begin the most surreal experience of my life.
Within the next few days, I was officially diagnosed with acute myeloid leukemia (AML), a rare and aggressive disease that is treated with intense chemotherapy. The goal is to annihilate diseased bone marrow, thereby killing the leukemic cells too. Unfortunately, this form of leukemia often returns within two years, so a stem cell transplant is highly recommended.
The news was devastating and unbelievable, yet I felt a strange calm. I think I went into warrior mode -- relying on sheer determination, strength and positivity to assist my body in combating the illness.
Fortunately, the initial round of chemotherapy put the cancer in remission, and after some hesitation, I decided to go for a stem cell transplant. Four potential donors were found within weeks and one was a 9 out of 10 match – 9 out of his 10 blood proteins matched mine.
Diagnosed at birth with a rare leukemia, Eevie had a 17 percent chance of making it to age 2. Now 18 months old, she continues to defy the odds as she marks the same milestones as others her age.
Her parents, Brynne and Ryan, report that she is all smiles and is a very happy (and thankfully ornery) little girl. Eevie was assessed and dismissed from physical therapy as she is "right on track." She is walking around the house, trying to put on Mommie's shoes, and is saying multiple words. Eevie loves to make animal noises (mainly the tiger, her inspirational mascot) and growls often! She is a HUGE Minnie Mouse fan and enjoys hugging and kissing her Minnie as well dancing to the Mickey Mouse Clubhouse songs.Her parents are optimistic about her prognosis.
“I feel like I'm the luckiest mom alive,” said Brynne. “All of the odds say she shouldn't be with us and she is. What a gift."
As far as her study protocol, Eevie is nearing the middle of the maintenance phase of her treatment for congenital acute lymphoblastic leukemia (ALL). She is currently taking low-dose IV, oral, and intrathecal chemotherapy. Eevie still struggles with swallowing and thus remains on her feeding tube. She is working with a speech therapist once a week. She enjoys licking KitKats and Pizza crust, but that's about it.
Though research on congenital ALL is extremely sparse, one study reports that by this time in treatment, very sadly, 27 of the 35 babies in the study had passed (van der Liden et al., 2009). If Eevie lives to age two, her odds of beating the disease increase to 85-90%. Her parents are often reminded that she is at high risk for relapse and multiple side effects of her treatments (e.g., secondary cancers, growth problems) but they choose instead to focus on her incredible progress and fierce spirit.
Nancy Hallberg was first diagnosed 16 years ago with indolent non-Hodgkin lymphoma before LLS-funded research helped develop the drug that put her into remission – or as close to it as she’ll ever get. She is now the chief marketing officer for The Leukemia & Lymphoma Society.
This blog is the third in a series.
With the recurrence, my doc scheduled me for a PET scan, explaining that this imaging test uses a radioactive substance to reveal areas of higher chemical activity – indicating cancer – where we otherwise might not see or feel a lump. Despite the innocuous name, there’s nothing warm and fuzzy about a PET. I was perched on the exam table, shivering in the ubiquitous thin, backless exam gown, when the technician entered – faceless in a full body radioactive hazmat suit. With obvious effort, he opened the heavy gray lead mini-sarcophagus he was holding, to reveal yet another larger-than-life needle in an industrial strength metal holder. Eyeing it, I fought back vertigo as I signed multiple release documents and then received an affidavit for me to carry stating that I was temporarily radioactive as the result of a medical procedure, not for some other nefarious reason. Just in case I planned on traveling anywhere for the next six months!
After all that drama, the actual test was a relief. You simply have to lie still in a big, slow moving tube for a full 60 minutes without moving while the radioactive tracer does its sleuthing. After 10 minutes of resisting the urge to scratch my nose, I gave up and fell asleep in the darkened room. A human glow stick. Very anticlimactic.
The results, on the other hand, were anything but. The test revealed that not only was the lymphoma back, but there was another malignant area behind my left knee. An escalation in treatment would be required. Time to move on to the next course in being a cancer patient: Cancer 201: How far we’ve come.