I’ve put off posting because I want to share some things that are hard to explain - - so hard that I keep writing posts then deleting them.  We all knew that during this last hospitalization, Noah was much sicker than he had ever been.  I was worried and exhausted, and when all of Noah’s labs were so crazy I ended up with some sort of overriding concern that we were looking at TPN-induced liver failure.  At one point a doctor told me that Noah had apparently developed hemophagocytic syndrome which was the explanation for the crazy labs.  When she told me this, I did something very unusual - something unheard of for me.  I did NOTHING.  I didn’t ask a single question, because all I “heard” was that we weren’t dealing with a TPN issue.  I was just so thankful and so relieved and I didn’t even care what this strange, hard to pronounce “syndrome” was.

Noah’s labs (the ones we check) all normalized quickly once we got home.  His triglycerides went from 488 to 39 and everything else was looking great, so I continued to cruise along with relief that all appeared well.  A week and a half ago we had an appointment with our brilliant infectious disease doctor and she also brought up hemophagocytic syndrome.  She told me that Noah had apparently developed it and that it was responsible for his crazy labs AND the severity of this latest illness.

Here is where it gets hard to explain.  I don’t understand this well.  Our brilliant doctor said no one really understands it well.  She drew some labs and sent them to a lab in Ohio (apparently “the” specialist in hemophagocytic syndrome is in Ohio.)  The incidence of hemophagocytic syndrome is 1.2 in a million, which is probably part of the reason that it is so poorly understood.  Leave it to Noah . . .

What I “think” I know is this:

Even though Noah’s regular labs look great right now, he could still be experiencing effects of hemophagocytic syndrome.  The labs we sent off could shed light on this. 

Any time Noah is sick this could happen/will happen (we are hazy on this) again.  This has the possibility to be very grave for Noah.

It appears that the two choices are 1) the hemophagocytic syndrome is in remission right now but can/will flare up when he gets sick again.  At any point it could stop being in remission and become a constant issue OR 2) the hemophagocytic syndrome is not in remission right now and it is destroying his bone marrow and it will/can really flare up and get worse anytime Noah gets sick.  We would like option three, “none of the above,” but there does not appear to be an option three.

Once we know what is going on, either because the labs show a problem or because he gets sick and this happens again, we will need to consult with hemotology/oncology.  This is not cancer, but may need to be treated as cancer.  We are NOT at the point of sitting down, discussing options, and making decisions - but when that time comes we may have some extremely difficult decisions to make. 

Those of you who have followed Noah understand that there is no cure for his disease.  It is not treatable but it is progressive.  All we can do is put out fires and try to manage individual issues as they develop.  We’ve always known that one day we would face a fire that we cannot put out.  It’s possible that hemophagocytic syndrome is that fire.  It’s also possible (we hope) that Noah will amaze us all once again and that somehow this won’t be as bad as we think it will be.  In our favor is the fact that this was a relatively mild presentation - even though hemophagocytic syndrome tends to get worse and worse, it seems to me that starting off mild is a good thing.

What we DO know is that none of this has caught the Lord by surprise, and none of it is out of His control.  We know that He loves Noah with an everlasting love and that He will provide grace and strength and peace and courage as we and Noah need it. 

We will update on this situation as we learn more.  It may still be a couple of weeks before we get those labs back from Ohio.  We covet your prayers and your comments and only ask that you refrain from negative comments.  You are welcome to pray in any way that you feel led, but I am simply not up to dealing with unkind comments right now.

On a much cheerier note, my brilliant Hannah Grace has been having fun teaching herself Photoshop, html, and more.  As a practice project, she designed a completely new template/look for this blog.  It's about through and the new template should be loaded the next time I post.  I just wanted to give you all a heads-up so you don't think you landed on the wrong blog or something! 

Noah has gotten quite a few contributions for his Prayer Warrior Wall as well as some lovely care packages lately - I want to share more about both next time I post.

Blessings,

Kate