***This update has been adapted from my best friend and Clara's Godmother's blog. She posted this a few days ago after getting an update from me and in an effort to get this blog going with updates on Clara's condition, I thank her for writing this so well and amazingly accurately considering all the chaos, details, and confusing course of events.***
Brooke is a new mommy to my precious Goddaughter, Clara Violet Boyle. Clara is 4 1/2 months old, and one of the most loved little babies that ever was.
On Monday, August 23rd, Clara was a healthy little baby, and actually went for her "well check" in California where they moved in May.
On Tuesday, Clara was sleeping heavily and only waking to eat which was getting more difficult due to her congestion that had started a couple of nights before without concern. When she spiked a fever, they brought her to the doctor's for a sick visit where Clara threw up in the waiting room and was clearly not a well baby. The doctor wasn't sure what was wrong, but thought a virus or cold might be the culprit. Brooke was advised that the fever might return, but not to worry.
Wednesday brought a new fever slightly higher than expected and as such they brought Clara back into the Doctor's office and was still clearly sick but not alarmingly so.
On Thursday, Clara was still ill and the pediatrician suspected a UTI and so had Clara brought in for a urine analysis. That night, Brooke noticed that Clara's soft spot was swollen, and called the on-call doctor immediately. The doctor on call said that since Clara was not clinically lethargic, she was not overly concerned about the soft spot or the continued cold symptoms. Urine Analysis preliminarily looked negative.
On Friday, Clara was back to sleeping a lot (seemingly regressing to the state that she had been in on Tuesday - which concerned Brooke that Clara wasn't getting better). She wasn't eating very much either as the congestion was making sucking increasingly difficult. Brooke called the doctor's office, not wanting to go into the weekend with a sick baby and still not knowing the cause. The doctor requested that Brooke bring Clara in, just to look over her once more. Once the doc saw Clara (confirming a bulging fontanelle), she was immediately concerned, and had Brooke and Alan take Clara to the ER with concern for meningitis. A spinal tap, brain CT, chest x-ray, and full blood work-up later, meningitis was negative, brain and chest looked fine, but the blood smear showed "immature cells".
The hematology doctors explained that this meant they were 75% sure that Clara has leukemia. Clara was admitted to the PICU (Pediatric Intensive Care Unit). On Saturday, she received what was the first of what will be many bone marrow aspiration (fluid) and biopsy (bone).
On Sunday, they received confirmation that Clara does in fact have acute myeloid leukemia and a 65% chance of cure.
In an instant, Brooke and Alan went from being normal first-time parents of an infant to being parents of a very sick child. Clara went from being a happy, healthy baby to a baby who will be in the hospital for at least 6 weeks while receiving her two initial chemotherapy treatments. And her course full course of treatment will take at least 6 months.
**Clara is being treated at Stanford's Lucile Packard Children's Hospital under the current St. Jude's AML Study Protocol which utilizes the current standard of care for this disease.***