Lucy was scheduled for her nine month post transplant follow up in KC last week. In addition to a bone marrow biopsy she was scheduled for a stim test with endocrinology to test the function of her adrenal gland, and an appointment with allergy/immunology to get to the bottom of her new food intolerances. It’s a lot to cram into two days but we left Tuesday, planning to return home Thursday hopefully in time to pick up Violet from school. Things did not go as planned.
A few hours after arriving at grandmas on Tuesday Lucy spiked a fever. It was late in the evening so we went to the ER (because she still has a central line, her port, a fever will always mean a trip to the ER or clinic if we were ever lucky enough to spike a fever during the working day!). I grabbed a few things but expected a long night in the ER for blood cultures and IV antibiotics, then back home. I was truly shocked when the resident came back into the room after her labs came back and told me Lucy was neutropenic and would be admitted. Her ANC was 640. She has been in a nice comfortable range of 2,000 – 3,000 since she engrafted her new cells. The following days she dropped even further, 440, then 120, yikes!
I’m sure there are several reasons for counts to drop like this, and I was fairly confident I knew that it was because Lucy had a virus. Violet was sick a few weeks ago and Lucy had started coughing and sneezing that very day. Logically, I knew she must have a simple bug, but a drop that drastic in blood counts could mean relapse. Thankfully, a nose swab in the ER rapidly revealed Lucy had the parainfluenza virus. That made me sleep much better that night … except Lucy was squeezing me out of a narrow hospital bed, so let me take that back. It has been six months since Lucy and I slept in the hospital, a nice run. At least we only spent two nights, and Dr. M got a lot accomplished for Lucy while we were there.
Lucy had a stimulation test to check the function of her adrenal gland. When a person is on steroids for a long time, like Lucy was, the adrenal gland literally quits making cortisol because the body is getting what it needs (steroids). Lucy was on replacement hydrocortisone for a month after stopping steroids then we stopped that cold turkey to convince her adrenal gland to pick up the slack. Before the results of this test Lucy needed a “stress dose” of steroids when her body was in stress, like with fever, vomiting, or surgery. Good news, she passed! One bottle of medicine in the “no use” bucket. Next was a visit with the allergy doctor (which was kind of useless) and blood test of Lucy’s IGE levels of suspected food intolerances (very interesting). Lucy was way off the charts of a “normal” response to eggs and dairy, which were specifically tested for since I reported as making her sick. Dr. M has been reading literature about the possible connection between tacrolimus and food allergies reported in solid organ transplant, with support of potential cases reported at CMH, so he stopped Lucy’s tacro. Her levels were low enough to forgo the wean and just stop. This is the immune suppression drug that also required profolaxsis antibiotics and a magnesium supplement, which we suspected has been causing diarrhea and maybe a touch of nausea affecting her appetite. So now these are gone too, three more meds off her list, wahoo! The day of discharge Lucy ANC was a scary 120 so Dr. M gave her a dose of GCSF to see what he body would do. At clinic the next day (Friday) in KC her ANC shot up, to over 5,000! Dr. Myers said with a huge grin that he felt this response supports his feeling that this is not leukemia, just a body in recovery from a virus. After this artificial boost he expected her counts to drop back down and recover in a week or less. Yesterday (Monday) labs in stl revealed that Lucy’s counts have recovered, completley, with numbers better than we have seen in months! Over the course of a few days we were knocked down low, only to be brought up higher than we have been in months. Always on guard, I wanted to question our docs if this is normal? Is this ok? But instead I will thank you all for your continued prayers for our girl.