We thought this was the summer of Hamilton. The soundtrack filled our house every day, all day, for the past 2 months. With the music memorized from start to end, the kids were ready to take the stage. In fact, Elena is taking the stage in CATS in August. This was a summer of music, theater, and laughter. This was a summer of swim team, tennis team, play dates, pool dates, camping, family, travel and much more. The summer of 2016, Seattle. Then The World Turned Upside Down. It started little by little, then all of a sudden. Ewan had knee pain after tennis practice. It was difficult to walk. His pediatrician took a peek and said to bring him back if not better. A few days of rest and… he felt better! Then the pain came back with vigor. He had a light fever on a Wednesday evening and by night’s end was unable to walk because of the leg pain. Resting on Thursday didn’t alleviate the pain. Friday, Ewan visited his pediatrician again. She noted light bruising, stated she was confounded and suggested a blood draw to run tests. Saturday, we received news that he had an elevated sediment rate, indicating inflammation in his little body. We received an ominous call on Sunday evening. We now know you never want your doctor calling on a Sunday evening.
Dr. Ellner explained that that Ewan’s white blood cell count (WBC) was very high and that the hematopathologist saw abnormal cells in his blood. The words “possibly leukemia” were used and she said, “if he were my child, I would take him to the emergency room now.”
It was not an easy decision, Ewan was tucked in for the night. We were tired. What difference would a few more hours make? I called my dear friend Kate with concern in my voice. When she echoed back the concern and urging us to following doctor’s orders we knew what we had to do. Earlier in the week, I had started reading the massive book The Emperor of All Maladies by Siddhartha Mukherjeeand and remembered reading in the first 15 pages:
Leukemia is cancer of the white blood cells—cancer in one of its most explosive, violent incarnations. As one nurse on the wards often liked to remind her patients, with this disease “even a paper cut is an emergency.”
I can’t underscore the gift of living within 20 minutes of Seattle Children’s Hospital. Children’s Hospitals, in general, are magical places that meet their patients needs like no other. This was is especially adept. At the emergency room entrance, a nurse was standing and waiting to greet us. When we stated Ewan’s name, with a warm nod, she replied, “yes, your doctor called us, we were expecting you.” Ewan was taken back to a private room within 3 minutes. That’s when the flurry began.
I can’t recall all the details of that long night, even though it is less than 72 hours behind me. There was a nurse named Jill, then vitals, then a team of doctors: the ER resident, a hem/onc attending, a fellow and a resident. Tests were ordered: blood draw, iv fluids, chest x-ray. I remember seeing about 6 tubes of blood sent off. After about 90 minutes, I turned to Michael and remarked, “No one has even asked us for our insurance card.” It would come later, but that is the magic of Seattle Children’s Hospital – they take care of the important thing first – the child.
Then there was The Conversation. We followed the team to a quiet room while Ewan was been monitored. This was a “have a seat” talk. They asked us what we understood. High white counts, inflammation, fever and abnormal cells. It started to hit me. There were 4 doctors in this room. Ewan’s puzzle pieces were coming together to form something larger than a passing virus or tennis tendonitis. WebMD had ill-prepared me. The pediatrician’s comment over the phone about leukemia was an honest seed of a message. The team explained that in all likelihood, our son had cancer.
The question keeps coming up: “do you have any questions?”
No, not any that will give me the answer I want to hear.
I want hear, “this isn’t happening.”
For the last year, I’ve been working at Seattle Cancer Care Alliance performing clinical cancer care with stem cell transplants.These are a later stage, extreme phase of treatment. In the past, I’ve worked in the Hematology & Oncology Department at The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins School of Medicine. Our research focused on stem cell biology with the aim of treating blood cancers. This situation in front of me is a completely foreign phase in the spectrum of cancer’s beginning and end. This was the start of a diagnosis in my own flesh and blood, our 6 year-old-son. If you are reading this, you know Ewan is the sweetest, smily blue-eyed boy. He is earnest and lovable. He is eager to please and loves his friends and family with fervor. And now he is also a medical record number with a seemingly endless growing number of orders, reports and results and medicine. By 2am, the hospital’s own hematopathologist had confirmed a large number of blast cells under the microscope.
An hour after an antibotic, ceftazidime, was administered, Ewan was admitted and moved upstairs to the cancer ward.
Our summer drama will not be a civics lesson set to music and dance, but rather a lesson in medicine and a new reality of Ewan living with a cancer of the blood, until it is cured.