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.
Part 2 of a guest blog by a chronic myelogenous leukemia (CML) survivor who was diagnosed at age 18.
When I was first admitted to the hospital, a nurse told me that I was lucky to have my kind of cancer. Half of me said “Screw you!” and the other half said, “You’re right.” Today, I am nearing the 2 ½ year anniversary of my chronic myelogenous leukemia (CML) diagnosis. My blood is in remission from the disease, and my bone marrow is almost there, too. Cancer feels very far away from my daily life—when I take my pills, I don’t think “Ho hum, taking my oral chemotherapy!”. The most obvious effects of the disease today are in my early bedtime and my refusal to accept the tequila shot.
I am very lucky in this respect. I did not have to undergo a bone marrow transplant or lose my hair. I often ask myself, “Out of the thousands of types of cancer, how was I so fortunate to get one of the mildest and most treatable kinds?” I am filled with gratitude each time I think about it. People tell me that I am brave or strong, but all I have done in my “fight” is show up to appointments and swallow a pill. Billions of dollars of Novartis’ R&D are more responsible for my health than anything I’ve done.
With this gratitude, however, comes a feeling of inner conflict. I don’t have a “traditional” kind of cancer. I never will have an inspirational moment in which I am told my fight is over. I live from pill to pill, knowing that if I stop taking this drug my cancer will almost certainly cause my death. I am able to comfortably ponder the fragility of my own existence, held in limbo by a red pill (very Matrix!).