Just a quick BIG post to say:  The steroids are working!

Less than 24 hours ago, I was asking Joe to consider how long he’d be willing to keep her on steroids if she didn’t respond.  After all, last week, there were zero reticulocytes.  And she still looked normal.  And was acting more-or-less normal.

It’s been a bit weird.  Even just 2 days ago, she was more or less fine.  She looked and acted normal.  It didn’t make sense.  Steroids aren’t homeopathics.  A normal body can’t not react to them.

Steroids are like getting hit by a train.  It should SQUASH you.  If it doesn’t, then you’re an alien. Or Superman.  It’s just not normal not to be squashed by a train.

So how long would we leave Adahlia on a known toxic medicine, one that could be doing any number of very bad, unseen things to her endocrine system… when on the surface it seemed to be doing…  nothing?

Doctors sometimes push for a high-dose steroid trial of up to 6 months for children with DBA.  In my book, that’s far too long.

Last night, we agreed that 6-8 weeks would probably be our limit if she didn’t show signs of positive response. We also agreed that we’d rather try steroids again in 2-3 years for another month, than keep trying for six consecutive months.

Bodies simply need time to recover.  Its true in athleticism — its true in medicine.

Well, today was our 2 week mark.  She’s been on high-dose steroids for 14 days.  We did another blood test.  Hemaglobin was down to 9.4, which is a pretty fast drop for just 2 weeks since her last blood transfusion.  And it matched what I thought — I’m fairly decent at reading how her blood levels are doing, and she looks like she is more anemic than she should be.

So, that’s kind of concerning.

BUT we also learned that her retics (baby red blood cells) are at 1.8 — which is at the high-end of normal range.

This is pretty huge!

Adahlia typically has a reticulocyte count that is undetectable.

I felt like celebrating.   Adahlia and I were both very happy and hugged each other a lot.

There is some concern that the baby red blood cells (retics) wont fully mature into working red blood cells.  Believe it or not, this happens fairly often.  No one knows why, or what happens to the baby blood cells before than can become useful.

Most likely, the Spleen clears them out of circulation.

Good news? The Spleen is one of the organs we’ve been addressing with homeopathic and Chinese herbal medicine.  In fact, the Spleen is the organ, the “directional arrow,” of her current Chinese herbal formula.  So… yay!  Her Spleen is healthy. Her baby RBCs should survive.

What else?  Her white cells are higher than normal — that’s to be expected and that’s okay. She’s still immune compromised, but we are taking measures to boost her immune system to counteract it.

Her platelets are still within the normal limit, and that’s very good — if they get too high it could cause a blood clot.  If it rises, she’ll have to come off the steroids early.

How is she doing?

Well, fine.

Typically, high dose steroids cause not only weight gain and puffiness, particularly in the face, but also extreme appetite.  Typically, there is difficulty sleeping.  Typically, energy is all over the place — boosting up high and then draaaaging.

Typically, people look awful on steroids.  They look just plain sick.

Adahlia looks normal.  (She feels heavier, but I also really need to work out again.)

She gets more tired in the evening than she used to — and that’s a good thing.  She woke up a little later than normal today, but was spunky once awake.  She isn’t eating everything in sight… if anything, I’ve been concerned about how little she’s eaten.

I can tell that her emotions are bigger than they used to be.  But anyone who knows her knows that she can have strong emotional responses. They do seem bigger, but it’s really just started, and it’s not unmanageable.

In general… she’s fine.

We’re doing a lot to prevent the common side effects of steroids (such as thrush, viral infections, reflux, insomnia, adrenal crash, belly pain, digestive upset)… and the verdict is:

She’s fine.

The side effects aren’t so bad… at least yet.  And even if they get worse, I feel good about the fact that we didn’t see even a hint of them until now.  The docs told us to expect them within 7 days.  I think it’s a great sign that her body is able to deal with the blow of such a strong medication.

And that makes me think that her response to steroids might be sustainable, too. She’s not “reacting” — she’s adjusting.

I feel REALLY good about this.  I’m feeling very hopeful that with the support we’ve given her spleen and other systems, she won’t destroy her own baby RBCs before they mature and become useful.  I’m hopeful that we can wean her completely off steroids, using natural, homeopathic, and Chinese herbal medicines.  I have many tools in my back pocket…. ones I haven’t even used yet for her.

I cannot express how HARD these past six and a half years have been for me.

Everything could change.

As I joked to a friend in the park, “We could finally live a normal life.”

You know, not be stressing about keeping her alive.  Have the space to think about career, travel… creating a positive future for ourselves.  Seize all the opportunities we’ve been able to preserve for her, for us, by keeping all her vital organs healthy despite this life-threatening condition and the toxicity of chronic transfusions and chelation medicine.

Of course, the “normalcy” wouldn’t last long.  Not with me!  I’m sure we’d choose to become abnormal again… but in a very healthy, very cool way.

More to come!   Cross your fingers for us.  Send love, light, and positivity her way.

She’s earned this.  We’ve fought, wagered, and given physically, mentally, emotionally, financially — you name it! — to make a healthy life of possibility available to her.  I don’t regret a minute of it.  I’d do it all again.

In my eyes, there has never been anything “wrong” with her.  Her system was traumatized by my own kidney failure while she was in my womb.  She was overrun by “bad” bugs and inflammation.  (But not anymore!)  She’s the strongest, bravest, brightest, and most expansive soul I’ve ever met.

This is her moment.  Her beautiful, resilient body can do it.  Send her your love and support!  She can live a life of infinite possibility.

And if you have a spare prayer — or angel — send it my way so that it’ll whisper to me what to do next.  What medicines to give her and when.  God willing, we will realize this dream.