Thursday, October 16, 2014

It is a whole new world, again

It has been a wild three months since our last post.  Chloe turned one and since then, life has been a blur.

Walking, talking and a little brother on the way!  Our family grows to 4 in March 2015.

In addition to all of that excitement, we have had more doctor visits than we can count.  Chloe (very likely) has Cyclic Neutropenia: a one in a million blood disorder that causes her body to produce dangerously low counts of white blood cells, specifically neutrophils, at a cycling number every 3-6 weeks.

We are still in the diagnosis and discovery stages, but after multiple visits with a Hematologist at Phoenix Children's Hospital and monthly (now weekly) blood draws to check her counts, we are getting more and more data to support the diagnosis.  And it was all discovered through a routine lab test after her one-year well check.

If you know Chloe, you'd never think of her as a "sick kid."  She didn't even have a cold until she was 8 months old which was the first, and only, time she had a fever. Until last week.

Last Friday, she felt a little warm and looked a little off to me.  Her spirit was still there, but something just inexplicably looked different about her.  So I took her temp and sure enough, 99.8.  Technically a low-grade fever, but things are different now that we know what we do.  If she develops a temperature of 100.4, we must monitor it closely and regularly.  A fever of 101 means it is off to the doctor or Emergency Department.  So we took her temp an hour later and sure enough, it hit 100.4 exactly.  Every 30 minutes we took it again, and by 11 it was up to 101.4.

We called the Hematologist on call earlier in the evening, who advised to wait on Motrin/Tylenol and to head to the ED if it hit 101 so they could check her Absolute Neutrophil Count (ANC). Off we went to an experience so unfamiliar and terrifying to the new parents that we are.

By the time we arrived, it had reached 102.  Unknowingly to us, a neutropenic child is a high priority.  We were rushed to a room to be seen right away.  A dose of Motrin, poked and prodded, test after test sent off to the lab, and 5 hours later we were sent home with a diagnosis of a fever from no obvious cause and a 24 hour antibiotic shot, just to be safe.

The "normal" range for ANC for a child Chloe's age is somewhere between 1,000 and 1,500.  During all of this, her ANC was 759.  Comparably, this is on the high side for her; just three days earlier it was in the 200s and two weeks before that, 138.

This was of course on a weekend so a couple days later on Monday, we went in to see her pediatrician.  The fever continued, but with Motrin it never exceeded 99 point something.  They said that it may eventually reveal itself, but it could be something viral that they just can't identify.  We were starting to connect it to teething, especially since she continued to be her happy self through all of it.

Then on Wednesday, the fever finally broke.  All off a sudden, she broke out in a rash all over her diaper area, tummy, sides and even up her neck.

Back to the pediatrician we went and an answer! Roseola.  A very common virus for babies and toddlers.  Unfortunately it isn't the answer for her neutropenia, but at least this round is over.

We have learned so much and have so far to go.  It is incredibly overwhelming to think about life with a child with a diminished immune system.  Uptight house rules of shoes off, wash your hands, and no one over that is sick in the slightest.  Looking at everyday items, immediately seeing the germ potential and cringing inside.  Dreading the day they start school and are exposed to a plethora of viruses and bacteria.  Sick to your stomach about all of the news of Ebola outbreaks and the reality that it is in our backyard in Arizona.

The only saving grace is that she very well could grow out of this, possibly by the time she is only three.

For now, we continue to check her counts and collect as much information as we can and I do my best not to turn into too much of a Mama Bear, protecting her little cub from those everyday germs that everyone else can so easily handle.  I will say though, after the traumatizing and expensive week we just had, I just don't think it's worth it to worry about being "polite."


  1. Morgan, we have used essential oils successfully to boost immunity and to help fight illness. I don't want to type a novel here but I have my own EO success stories that give me the evidence I need to keep using them. You may or may not, but I just want to share that after anti-biotics I give my kids probiotics to replenish their gut.

  2. And, are those cell phone pics. Your pics look great.