Zoe had her 6 months post-transplant studies recently, I wanted to offer some of those numbers for families who are looking for another marker in where HLH kids might be after that amount of time. Obviously every child is different, and each has their own set of struggles that might be different from the next, but I believe that more publicly available information is helpful. I’ll go over some numbers, and then offer a reference point for them in parentheses so that you can see where she falls.
- Ferritin: 95 (7-91 normal) – This is the marker that helped diagnose Zoe’s HLH originally, it was up around 5000 at that time; it has since returned to normal
- Cortisol: .5 (5-25) – Her Cortisol level is low, and we’ve consistently had a hard time raising it; she receives Hydrocortisone multiple times a day, but were she to get sick in any way she would need “stress” doses to help her fight
- Vitamin D: 15 (30-100) – Her Vitamin D level is also low, perhaps in part due to it being winter and in part due to her limited outside time, in addition to consequences of her treatment; she receives Poli-vi-sol vitamin supplements each day, but she will be starting a further supplement next week
- FK-506: 4.4 (5-20) – Tacrolimus is a little low, we’ve been working to get it up without raising it too quickly
- Magnesium: 1.8 (1.9-2.6) – On target, a little low perhaps; if you are a regular reader you may recall that Zoe takes Magnesium supplements due to consequences of her treatment and being consistently low until recently; restoring these levels naturally takes a great deal of time without an oral supplement
- Sodium: 137 (134-146) – Good
- Hemoglobin: 11.8 (10-13.5) – Good
- Platelets: 327 (150-400) – Good
- Bilirubin: .5 (.4-1.5) – Good; Zoe never had any danger with liver function that we know of, we are lucky; some transplant families have to watch this number closely for awhile
- Creatinine: .2 (.1-.6) – Good; her kidney function appears to have returned fully after a scare pre-transplant
- WBC: 8.1 (3.8-14) – Excellent! One of the items we all watch most closely post-transplant; Zoe has not dropped below 6.0 for awhile, we’re very excited about her stability here
- Engraftment Analysis: >98%, no pre-transplant recipient cells detected; This means that, based on the test used, Zoe’s marrow is still greater than 98% donor, as it was at her first test post-transplant; We’re right where we want to be on this test
- General Mental Status: “Alert, Smiling, Age appropriate in speech and responses”
Beyond that, developmentally, Zoe is on the cusp of walking. She’s been crawling for a few weeks, started cruising after a week or two of crawling, and is now trying to stand freely. She is babbling quite a bit, knows how to say Mama and Dada and Aya (Maya), as well as a few other “words”. As best we can tell, she is doing great. Her first birthday is on Monday, January 10th.
We’ve had quite a few bumps post-transplant, some of which have come and gone fast enough that I didn’t document them here, but nothing life-threatening or indicative of a return of HLH.
Our task now is to keep on keeping on: keep ourselves and our 3 year old illness free by avoiding iffy situations during cold/flu season, and thereby keep Zoe healthy; get her Cortisol and Vitamin D levels up, and maintain her other meds. In another 6 months we hope to be done with most of her current medications, though it is possible she may continue to need supplements. Go Zoe!