Without much time to spare, here’s the news:

• Adahlia received a transfusion last week at 4.5 weeks.  Her Hb was 8.1.
• Her ferretin was 314.  (Last month was 320.)
• Her reticulocytes remained non-existent.
• But she is now in the 85th percentile for weight-for-height.  (Last month she was almost at the 80th.)

This is huge.  Why?

• I believe Adahlia’s ferretin is lower than reported.  (This is the marker of iron overload.)  Why do I think it is lower than 314?  Because she had a cold last week.  Viruses tend to create a rise in inflammation, and inflammation increases ferretin.  This means her iron overload was likely measured higher than it really is. In reality, it is likely lower than 314.  It means her worst-case scenario is that her iron overload situation is holding steady.  What it means is that her real ferretin measure (if she wasn’t suffering a cold) is likely much lower.  Perhaps as low as 150 or 200.  Now of course, since ferretin measures inflammation as well as iron overload (and is actually is a pretty unreliable indicator of iron overload status once overloaded), what we really might be measuring is a huge drop in systemic inflammation.  And after polling some peers, it seems that most DBA kids get stuck at a ferretin plateau of 700-800 … Even though they continue daily chelation.
• Adahlia was tracking along at the 50th percentile for weight-for-height for her entire young life up until 3 months ago.  In just 3 months time, she has shot up to the 85th percentile.  When she jumped 30 percentiles in two months I was psyched. Amazed.  And I figured it was over.  I figured she’d hold steady.  But in the next month, she added enough mass to make it into the next 5th percentile?  Its almost unfathomable.

What on earth is going on?  

I believe she is healing internally.  Systemic inflammation underlies nearly every chronic disease process.  If her body is indeed showing us that it is resolving systemic inflammation, in addition to iron overload, then that means she is healing.  It means, at the very very least, that the extra iron in her cells — or something — is at least not causing as much of an inflammatory response.  It means that her body is not under as much stress and self-destruction.  Will it mean that she makes her own red blood cells again?  I don’t know.

Does it mean we are normalizing and optimizing her digestion?  Definitely.

And that means anything is possible.  She is growing.   Her body is demonstrating significant potential to heal.  She is claiming herself.  Building herself.

Now, all we need is patience.

Observation, curiosity, persistence, awareness, perception …

Patience…

and Prayer.  Please keep sending us your love and prayer!  We can do this.