Days 1-5

On Sunday night our 2-year-old daughter Dayssi was diagnosed with leukemia. Six hours earlier she was a healthy happy little girl with what everyone assumed was a sprained ankle.

Just the Facts

So just to get the important facts out right away:

Dayssi has Acute Lymphocytic Leukemia (ALL) B-precursor. This is the most common - and most treatable form of the disease in children. She is also in the lower risk subgroup (Children 1-10 years of age). In addition, her white cell count at initial diagnosis was 35,000 - below the 50,000 marker for higher risk. Finally, tests on her cerebral spinal fluid (CSF) from a lumbar puncture show no evidence of lymphoblasts (leukemia cells) in her spinal cord fluid - another good indicator. So, in sum, the prognosis is very good. 80% of patients with her profile are-- in effect-cured.

The bad news is that the treatment is both lengthy and unpleasant. She will undergo 1 month of induction (intensive chemotherapy) designed to knock out the diseased cells, 5 additional months of intensification, designed to consolidate remission achieved during induction, and 2 years of maintenance, designed to ensure the elimination of any traces of the leukemia cells.

The History

It was only after an X-ray of her ankle showed no breaks or fractures and we learned that toddlers rarely get sprains that the pediatrician at the PAMF clinic suggested "additional tests," which were probably "unnecessary," but that we would do just to be safe. She would call us if anything came up.

Well about an hour later she did call us and we went in with Dayssi. She described a series of anomalies in her blood work-up. She was tentative and indicated that additional tests would be done, but that she was sending us over to Stanford University's, Lucille Packard Children's Hospital (LCPH) emergency room and had called the hematology/oncology fellow who would see us there. A few hours later additional tests confirmed the diagnosis of leukemia.


Dayssi's Team

Dayssi's primary physician is Dr. Dahl, a professor at Stanford Medical School and a specialist in leukemia.

One of the most comforting things he said, at least as I remember it, was the initial reassurance after he delivered the diagnosis:

"It's just cancer and we're going to kill it."

Dr. Dahl exudes a kind of confidence that comes with 30 years of experience, and having observed first hand (and contributed to) the advances in treatment methods and outcomes. For my part, I found his understated cockiness reassuring.

He is supported by a group of top-notch fellows, residents, nurses and other medical personnel. But the most impressive thing about the care at LCPH is not the technical expertise of the medical folks, but is the social and emotional attention devoted to the children's psychological comfort and well being. There are well-stocked play-rooms, a library with books and videos, and an ever present cadre of child life specialists who do everything from inserting central lines and IVs in teddy bears to educate the child patients to leading arts and craft sessions and reassuring anxious parents.

The First Week

On day 1 Dayssi had a bone marrow aspiration and biopsy. This reconfirmed the diagnosis and provided samples necessary for identifying the subtype of leukemia.

On day 2 she had a spinal tap - or lumbar puncture (LP) to obtain fluid to test for the presence of the cancer cells in the CSF and to give her the initial dose of chemotherapy (intrathecal) just in case.

On day 3 and 4 chemo continued with a variety of medications.

On day 5 (today) she had her central line (a PICC) inserted to provide easier access for blood draws and administration of her intravenous medications.

Overall, today was a good day. The anesthesia was easier, her crabbiness afterward was familiar, and by the end of the day she was walking around and playing with her sister India. Moreover, having her PICC line meant no more painful needles every 8 hours. The hardest thing seemed to be getting her to take the "yucky-tasting" oral medication (dexamethasone.)

All those billions of dollars on pharmaceutical research you'd think they'd find a way to make this simple steroid -- which is perhaps the single nastiest tasting substance known to mankind - palatable.