The Great Hope

Alright Sports-Fans, Buckle-Up.

Because this is a gonna be a blast.

A blast of information that will take you like a roller coaster through some very big changes, some drops, some twists, and ultimately, to a really high-high hope.

And maybe, just maybe, we’ll find ourselves at the top, and we’ll cut loose the straps, and find ourselves flying.

It’s the Great Hope anyway.   And I’m here to tell you about it.

I’ve noticed that sometimes my posts don’t get posted to Facebook.  And I’ve noticed, also, that email versions of these posts are publishing from the name of a friend of mine, instead of my own, if you are subscribed to receive emails of my RSS feed.  Its odd.  I don’t get it.  Have I been hacked?  Who knows?  Honestly, this whole technology thing is only barely under control.  It’s like we’ve created a giant pit bull, like the size of a horse, and we’ve got a tiny little leash on him, a collar that’s more stylish than practical, and then he spies a human friend he desperately wants to lick and cuddle, and his tail is going crazy so we are ducking from it, and now suddenly he’s chasing a squirrel, and then he sees a ball fly overhead so he’s leaping, and we are barely holding on, and now he’s rolling in the grass, and now he’s stopped and is sniffing and so we think the worst is behind us until he takes a big poop… and we really don’t want to pick it up and carry it around with us.

Anyway.  Technology is not the Great Hope.  We are.  Because we are some pretty fierce, determined, crazy, inventive, observant, and thoughtful creatures capable of synthesizing extraordinary amounts of information and experience.

It’s true.

Let me get back on track.

Pit bulls and poop aside, I have some SERIOUS hope for Adahlia right now.  Yes, I know my pervious post was pretty melancholic and depressing.  BUT — I found out a few things I could not have foreseen.

First, and quite happily, I must announce:  She is NOT making antibodies to donated blood.  Repeat:  she is NOT making antibodies to donated blood!

I am so thrilled.  It is such a relief for us. We are SO relieved.

Honestly, its a baffling scenario.   I asked the nurses about it this past week, at her last transfusion.  They brought me the results of her Antibody Screen:  NEG.  She had zero antibodies against blood.

I had been expecting a much different response.

Confused, I asked them, “What about the last two times, when the blood had to be special ordered and shipped in from another facility, and we were here until 7 pm at night? And the time before that, when it didn’t take quite so long, but still took 2 hours longer than normal?”

“Well, it’s possible to make antibodies against blood and then have those antibodies go away.”

“That doesn’t really make any sense.  Isn’t whole point of antibodies (against viruses or anything) is that it is the body’s memory.  They don’t go away for what we vaccinate for, but do go away when it comes to blood?”

They agreed with me that it didn’t make sense, but said it does happen.

“Let’s check,” they said.

So they went and pulled Adahlia’s antibody reports for the last three months.  They brought them to me:  All Negative.

According to her medical chart, Adahila has zero antibodies against blood.  She never did.  The nurses are stumped.  They don’t know what happened during the last two transfusions, why it took so long for her blood to arrive, why I was told that they had to order “safer” blood from an outside facility, who it was who told me she was making antibodies, or why the antibody results haven’t been posting to my view in her myChart account since January (they are there now).


To hear that she is not making antibodies is the only possible good news that I could have received from the hospital on the subject.  It’s wonderful.

I have no idea if it was a miscommunication or a true miracle.  But Adahlia is still in the precarious clear.  Thank you, thank you, thank you, God!

Second:  Adahlia’s ferretin (a measure of iron overload) is only 276.  I feel like I should bold that or make it bigger somehow.  276!!  (There.  That’ll have to do.)

This is huge.  Like, the aforementioned horse-sized pit-bull huge.  I’m not sure if I know any other DBA people over the age of 2 with ferretin measures below 300.  (Feel free to comment if you do!)   She has dropped down from over 1600 to 276.  !!!  !!!

Now, ferretin is an imperfect measure.  As I’ve said earlier, it could also mean that her body simply is not fighting as many sub-clinical infections as before.  (Which is good news and something we’ve been working towards.)   It could mean she has less general, systemic inflammation.  (Also good news, as systemic inflammation = bodily destruction & death.)  I don’t know if it means her organs have barely any iron in them, but we are really hopeful that is the case.  And if its not — its still great news.

Third:  Adahlia is on a Chinese herbal formula that makes me squiggle with excitement.  It’s a blood-building formula that specifically targets the spleen and liver in Chinese medicine theory.   It is our GREAT HOPE.   I have been waiting for this formula for years.

Now, that might be confusing to you.  “Why wait?  Why not just use what you think will work?”

The answer, friends, is Therapeutic Order, or the idea that you cannot give something to someone before their body is ready for it.  In other words:  you’ve got to clear out the infections, the pathogens, and any underlying problems, and then you’ve got to restore integrity to the body (the gut) and functionality to the digestive and absorptive processes, before you can go about tonifying or strengthening anything.  You’ve got to do what the body needs; you can’t just jump ahead.  There are all sorts of reasons for this — my favorites are the ancient ones — but this isn’t the place to go into it.

The point is:  Adahlia first tried this formula in late June, around her 4th birthday.  She took it for about a week and then started complaining of really bad belly pain immediately after taking it.  Then, she started vomiting after taking it.

I reviewed her formula — there was nothing in it that should have made her sick.  And her gut wasn’t hurting her after eating any other foods, and we’d done such work to heal it.  I contacted my mentor, and he likewise reviewed her formula, reporting back to me that he was baffled.  I agreed to give her a half-dose to see what would happen.

She vomited.

So we stopped the formula.  Poor Boo — it just wasn’t worth it.  Both my mentor and I figured something must have gone wrong… it just didn’t make any sense.  So I told him we’d put it on hold til we could fly out again to see him and test the formula again.

Soon thereafter, Adahlia got a transfusion.  But what I didn’t get was the heads up that she was making RBCs!  For the first time since January, she had baby red blood cells, or reticulocytes in her bloodstream.  It was double the amount of those she had made in January.  It was still not enough to mean she was making her own blood — it was not even considered a “normal” amount of them.  But they were there.  I hadn’t realized because I had not even thought to check. I was so used to the report being “unable to detect — below instrument linearity” that I was simply unaware.

So, for over a month, she did not take any herbal formula. We went back to see my mentor, and we retested the formula.  With relief, but confusion, we found her body responsive to the formula, as well as favorably responsive to the individual herbs.  So why the belly pain and vomiting?  Was it just her body’s reaction to doing something it had never done?  Was she reacting to the idea of truly “coming into” this world, by making her own blood?

We found that her body wanted an increase of Bai Shao, White Peony, which is effective for reducing abdominal cramps.  So he wrote out a prescription for us to add an increased amount of Bai Shao to the existing formula.  Also, we’d add more Gan Cao (licorice), to smooth out the formula and help it be slower-released.  And my mentor almost stopped there.

“What about a down-bearing herb?” I asked.  “We need something to make the formula go down, to keep her energy down, so that it doesn’t rise back up.”

He thought about it a moment.  He tried a couple herbs.  She strongly wanted one, an herb I personally think tastes great, but is a bit spicy.  He was concerned she might not like it.  So he offered me this plan:

  • Add the gan cao and bai shao in appropriate dosage
  • If that doesn’t work, and the abdominal pain persists, add an extra amount of bai shao  (provided to me in a separate baggy)
  • If that doesn’t work, add in the bai dou kou, the down-going herb (also provided in a separate baggy)

Good plan, I thought.

So we tried it.  Adahlia first took the formula with the added gan cao and bai shao.  She said it tasted icky.  But we made a game of it, and she took it.  She did not have belly pain. She did not vomit.  Success!!  And that was the lunch dose.

Later that night, I gave her the evening dose.  She had no pain, and we sat down to watch a movie together.  Suddenly, she announced, “I have to puke!” and we ran to the bathroom.  She retched out an amazing amount of food and liquid.   But when I asked her, ashe claimed to have no pain.  She just suddenly needed to puke.

The Bai Shao was working.  The abdominal pain was gone.  But still, the formula came back up.  And we needed this formula in her.  While I cannot express to you how perfect this formula is for building one’s own ability to make blood and balance hormones (simply because you don’t have all the years of background in Chinese medicine education and I don’t have the time… its no fault of your own), you must believe me.  It is perfect.

So, I skipped the second baggie of Bai Shao and added the Bai Dou Kou (which is cardamom, for the curious).   I also gave her only half the dosage of the total formula, just because I feared that if she puked again, she’d refuse to try it again.   And then I waited.

And it stayed down.

And its stayed down since then.

Now, I know what you are all thinking.  How can spices and food-grade substances be medically therapeutic?

  1. Because they are high-quality or high-grade
  2. Because they are being used in a carefully balanced and designed formula in conjunction with other medical herbs, some of which are not food-grade
  3. Because we are using specific dosages
  4. Because food is medicine
  5. Because very wise, ancient sages have recorded how to use these herbs effectively and we are benefiting from their experience, mistakes, and successes
  6. Because everything has a frequency or vibration or energy and that’s what we are manipulating with both the individual herbs and the larger chinese herbal formula
  7. Because we’ve been conditioned to think that only pharmaceuticals are strong enough or capable of medically helping us, and that’s simply false.

I was so relieved to discover that she is now able to keep the formula down!  I contacted my mentor to let him know of the success, and now we wait and see.

Over the next week, I plan to increase her dosage of herbal formula 0.5 grams from 1.5 grams to 2 grams, 3 times per day.  The week after, I will try to increase it up to the full 3 grams, 3 times per day.

How has she been acting?  Well, she’s only been taking it two days, but I can report that she has been a little moodier than normal.  She’s been irritable and aggressive, not unlike the children who go on a steroid trial in the hopes of going into remission.  Its not quite that extreme, but it is noticeable to the observant parent.  She has also been wanting to sleep more, and yet, seems a bit high strung.  She has certainly been eating more.

I am contemplating letting her off the hook a bit on our specialized diet, so that she can get all the carbs and energy she needs to make her own blood, if that is indeed what she is doing.  Last night, for example, she wanted to eat a banana and it was nearly 9 pm.  That is not normal for her.  I let her have it, and she ate half.

This formula is our GREAT HOPE.  We’ve cleared the sub-clinical infections, and, I think, her body is ready to agree to stay here.  She doesn’t need to abandon her ship anymore.  We’ve designed a formula that should, by all accounts, do some amazing and much needed work in her body.   Her spleen and liver are supported.  She should be able to digest now.

She should be able to transform food into blood.

We shall see.

Prayers, love, light, and friendship, are always welcome.  Thank you for joining us on this journey!!  I pray, pray, pray, that this is our breakthrough… this is our moment.

But even if its not, I don’t see myself giving up.  We’ll adapt.  We will try new herbs.  We will tweak what we are doing to meet new information and try a new direction.

Because its possible.

And giving up has never really been my thing.