The day started off very poorly, around 5:25am Zoe’s temp dove to 95º. She began her first chemo medication, the Dexamethasone, which broke her ongoing fever fairly quickly. We had been keeping her only lightly swaddled and unwrapped when her temp was high, and after the med she apparently went from too warm to very cold as a result in part of the exposure. We do wish that it had been discovered more quickly — the nurses had been taking her temp every hour prior to the medication but for whatever reason they didn’t come in for several hours after it’s administration.

After some time of being swaddled with warmed blankets Zoe’s temp creeps back up to 96-97 and hovers there. Fear of infection has set in so they need to draw blood, however her veins are limited at the moment so instead they will put in a catheter to take a urine sample and minimize the blood needed.

5:45, Transport team from Neonatal Intensive Care Unit (NICU) arrives to do a blood draw, nurses on our floor have been having some difficulty and felt the transport team could work better with difficult veins; after a few minutes Transport has gotten the needed draw with minimal pain to Zoe, much quicker than the time spent trying prior to their arrival; relief.

9am, we’re moving to the intermediate pediatric ward, also know as High-Acuity, where they have few nurses per patient and will monitor her constantly until her temp has risen; can’t move to Hemo/Onc ward until a bed opens up, this is an intermediate preventative step after the temp scare due to poor oversight

1pm, visit from Dr. M to check in; Zoe’s Hemoglobin is 8.1, Dr. M says his threshold for a transfusion typically is 8, however because he feels it might help Zoe feel better he orders a RBC transfusion this evening; Zoe is now getting the first two drugs in her chemo regimen the dex and cyclosporine, as well as two of what Dr. M calls prophylactic measure to ensure there is no risk of infection, an antifungal and an antibiotic.

Dr. M introduces us to Ferritin, a protein that stores iron and has become a marker for HLH the more the disease has begun to be understood. Zoe’s is currently 3000, in a normal infant it would be 100; there is no risk from the Ferritin itself however it tends to show evidence of the disease activity. Coming down in Ferritin count is a good sign, the opposite is a worrisome sign.

We also briefly discussed genetic testing. Zoe’s has been sent but can take weeks to return, if she returns with markers for the disease (indicating she likely has FHLH) then we will have Maya tested.

11pm, blood transfusion begins, will last 3 hours; temp down to 96º again, was holding at 98º for awhile

1:15am, heart rate drops below 100 consistently — nurses feel she is probably just a little cold, but wrap her in warmed blankets to ease our concerns

Remainder of the night passes without incident.