The house is quieter than its been in over 2 weeks.

Adahlia has gone to her first day at her new school — and I don’t have to be at the clinic until 12:30 pm.

I feel so grateful that she’s at this school.  My only hope is that she can stay at it for her entire elementary and middle school experience.  There is some concern that because of needing to miss so many school days, she’ll miss too many experiential lesson days.  And be asked to leave the charter school for regular public school.

Like many folks who send their kids to charter or private schools, we’ve worked hard to get her into this one.  The wait lists for preschool, kindergarten and 1st grade are huge — each one can be in the triple digits.  (1st grade still has a wait-list of 45 students.)

How did I get her in?

Super fast typing fingers.  🙂  When the day and time came for online open-enrollment, I kept hitting “refresh” for the page.  As soon as the form was active, I flash-entered our information.

I was so fast, apparently, that I beat dozens of other hopeful parents.  Which I don’t feel bad about in the slightest, despite the fact that this school kind of operates on the West Point principle.

When we started at West Point, we got the same speech that I imagine they give every year.  Something about how hundreds of people apply for one spot, ten folks receive a nomination, and of those ten, only one gets admitted.  Then, the speaker continues to describe how our numbers will dwindle:  “One out of every four of you won’t graduate.”

Next, West Point takes the opportunity to guilt us into staying.  “You took a nomination from nine other highly qualified candidates,” someone with a lot of medals on his breast booms across the room.  “If you quit, you robbed those candidates of their opportunity.”

Which is kinda screwed up.  After all, those nine didn’t make it on their own merit — they lost that race.  Too bad.  A driven, healthy, and hard-working 18-year-old has many more opportunities ahead.  Perhaps they weren’t meant to go to West Point.  And who is to say that they wouldn’t have quit or gotten kicked out once the going got rough?

But, that’s USMA for you.

Anyway, this kind of reminds me of that experience.  We took an opportunity for our daughter that she might not be able to fully use.  This school doesn’t allow children to start at the upper grades.  You have to start in preschool, K, or lower elementary because apparently its difficult to teach a child to be self-directed after a certain point.  (The current educational model teaches children to need direction from an authority or system, and to think of performance as a way to earn external rewards.)

And I get it.  I know a lot of adults like that.  Certain personalities, if you tell them they don’t have to do something, will choose to do nothing.  Many folks (again, not myself) won’t listen to their inner compass and will “fall in line” if you threaten to take something away or promise a reward.  Developing that inner compass and a love of learning and achievement simply for the joy of the process is what the school attempts to foster.

She may not finish.  Anything could happen with her.

Quite honestly, like those nine random folks who didn’t “get” to go to West Point because I did, there are other children without a life-threatening condition who may have been able to finish what she might not.

But, you know what?  I don’t care.

She also might go into remission and live to be 97 years old.

And there’s more than a handful of kids who start at that school and end up needling more of a traditional educational approach.

She got this chance.  I won it for her.  And she deserves to take it.

In fact, it’s actually super-awesome that she gets this opportunity.  The school is perfect for her in many ways.  I’m SO glad she is there.

Why?

As a self-directed, self-paced learning environment, the children aren’t all required to do things at the same time as each other.

She’ll be able to eat when she needs.

She’ll be able to rest when she needs.

She’ll be able to explore subjects to the depth that she is intrigued — not be forced to close up her workbook and move on to a new subject.  She can work as slowly or as quickly as she wants, depending on her mental energy for the day.

In those ways, it is absolutely perfect for someone with her condition.

But there are days when they give “group lessons” — like guideposts — and the children need to be there so that they can receive the lesson and then do the work on their own, at their own pace.  And that’s when missing 1-2 days per month may become an issue.

Right now, actually, with the steroid trial, she misses 4-5 days per month.

Four days for laboratory testing.

A fifth day for a transfusion if necessary.

I didn’t update last week because we received confusing and bad news:  Adahlia had stopped making baby red blood cells.  (Either that, or something had started again destroying them). Her hemaglobin had dropped and she needed a blood transfusion.

The steroids were no longer working — no longer being protective.  (That’s the theory of how they work — they bind to baby RBCs and allow them to mature.)

For someone who knows me, it may seem odd to you that we were so happy that the steroids were working.  And so sad to hear that they weren’t anymore.  What with all the side effects and complications.

But the steroids provided hope that there is at least another way to treat her condition.

Not having that option is pretty scary.

I really wish it were different.

It doesn’t make sense:  She had no response to them after one week.  She had a BIG response to them after two weeks.  At three weeks — that response was not just decreased, but absolutely gone.  The hematologist I met with on Friday couldn’t answer my questions about her laboratory results.  I asked what multiple lab values meant to him — lab values that were out of range.  He shrugged.  He said he didn’t know.

“She might just not be a responder.  Some children just don’t respond.”

I couldn’t believe it.

“She HAD responded — why did she stop?”

I kept pointing to the out-of-range laboratory results.

“Isn’t there something in the values that make you think of a missing co-enzyme, a co-factor that could be deficient… some part of the pathway that we’re overlooking?  In the past, folate and B12 have always brought the elevated values back into range, but neither is “working” anymore.  Why?  Do you have any ideas?”

He said the values weren’t so far out of range as to mean anything to him.

Wow.  Thanks for being so helpful.   (Clearly, you weren’t educated in a self-directed system, were you?)

Adahlia is still beautiful, still strong, and still vibrant.  The high doses of steroids are starting to take a toll on her body — but she is managing extremely well.

She remains that bravest and most beautiful and fun soul I have ever met.

I want everything for her.

But what I can give her is constrained by forces outside my control.

A mom on our special, closed DBA support group posted in response to another DBA mom’s breakdown.  She told her (paraphrased):

“The uncertainty is terrifying.  But our children need us to be strong.  We cannot be present with them if we exhaust ourselves worrying about what’s happening to them.”

I was struck with admiration.  Such true and inspiring words!  I swear, some of the moms I’ve met on this journey are just the most phenomenal people.

Meanwhile, I’ve been following another DBA mom friend whose daughter has received a bone marrow transplant from her brother.  The mom started a Facebook page and has been chronicling their journey day-by-day, from hospital and laboratory preparations counting down to transplant (including days of chemotherapy to prepare the bone marrow to receive donor cells) to nearly 30-days of in-patient recovery post-transplant.  We are all relieved that her daughter is doing well — a few scares, but now doing well, even doing better than could have been expected.

Over and over, again and again, my fellow DBA mothers amaze and inspire me with their honesty, bravery, strength, and heart.

I volunteered for West Point and military service.

I would have never EVER asked to be a part of this group.

But I am honored to be in it nonetheless.

…

Everything changes.

With blood transfusions, we try to “freeze” the natural process that would result in our child’s death.  We try to stop time by buying it in one month chunks.

With steroid treatment, we hit the accelerator.  We try to blast through the obstacle to red blood cells, like stunt car drivers, pushing our child’s body to its limit to try to produce them.  Of course, we can’t keep the foot on the accelerator forever.  The car will eventually run out of gas.

It’s hard to live in frozen time.  It’s surreal to not be able to move your life forward because you’re holding your breath, unsure of what is about to happen next to the person you care most about in the world.

Because the world keeps turning.  Nothing else (and no one else) is waiting.  Not our workplace, not our bill collectors, not even our extended family members — are with us in this suspended animation.

Honestly, I have no idea how 6 years have gone by.  It’s amazing what has slipped away while I’ve been solely dedicated to trying to restore her.

Eventually, many of us feel the need to “go” for it.  Steroids.  Bone marrow transplant.  Anything for a chance at a more normal, joyful life of opportunity.  A chance to stretch up — and if we are strong and brave enough — to grab the brass ring.  A life without the lurking shadow of death over our children — the yellow-pale skin, the blue shadows under the eyes, the heart-wrenching complaints of pain and exhaustion.

The excursions ended early.  The ones never planned.  The ones cancelled two days before they were to begin.

No one can blame us (strangely, some people still do) for our choices.

No one wants this responsibility.

In our darkest hours, those of us with children on this path have come to realize some hard truths:

There isn’t some medical doctor or procedure or pill that can save them.

There isn’t some miracle-bestower we can bargain with or lay prostrate to.

When our children go into remission, it is the stroke of God, and incredibly good fortune, and a ton of dedication and work.

But, we can’t “make” it happen.

We do our VERY best.  We make herculean efforts, over and over again.

In the end, however, I’m not so sure that effort, skill, or devotion is what it comes down to.  There are larger forces at play.  A mystery beyond current comprehension and will.

So, we buy a bit of time to try to figure things out.

And say “GO!” when the time feels right.

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.

You know, even as a kid I hated cliffhangers.  It just seemed unfair to make me wait another week, or even day, to know what happened to She-Ra and He-Man.

And so for those of you who follow this journey, I won’t do you like that.

We got the results back.  Adahlia isn’t having a response to the steroids yet.

What I mean is that she isn’t making red blood cells yet.  Zero reticulocyes.  Undetectable.  While they are certainly wrecking unseen havoc on her system, they aren’t doing what we want them to do.

This doesn’t mean they won’t work at all.  Some kids require a month on high dose steroids before their bone marrow kicks in.  Other kids require two.  Still others have actually had zero response until SIX months of high dose steroids.

I’ve already warned N. that there’s no way in Hades I will allow my child remain on high dose steroids for six months.  I won’t do her like that.

But every week that goes by means a week longer on high doses before we can even begin to think about weaning off them.

I’ll test her for them again tomorrow.  (I’m not sure what I’ll do if they now test negative for her. We have to at least give it a month — I’ve committed to a month.  And there’s error in everything…. in every form of testing… including fascia testing.)

…

We have swam against this current for so, so long.

We need a break.  There are so many things I could wish for.  I really only want one.

We almost tried steroids one other time… when she was 3 years old and docs told us that she had “emergent” levels of cardiac iron (i.e., it was an emergency because she had iron built up in her heart from so many transfusion).  We agreed that if the situation didn’t resolve, we’d have to try the steroids.  Each additional transfusion poured in more iron.  Each bag of blood was another locked up, blown engine.  Her plane couldn’t continue to fly this way.

The docs increased her chelation medicine.  Even so, her heart wasn’t supposed to clear of iron.  Nothing to lose, no previous research to follow, I decided to start doing a japanese moxabustion technique over her heart (CV17/BL12-15) to help guide the chelation to it.  Six months later, her heart was clear.

“Unbelievable,” they said.

We took it as a sign we should keep going with what we were doing; not to do steroids yet.

As bad as its gotten, every time everything has almost collapsed entirely, something would swoop in and save us.  Some last minute bell.  A ball hit just high enough, just far enough, for us to slide into the next base.

Never the home run.  But enough.  Enough to keep breathing, to keep going.  To put our chips back on the table.

“Black.”

…

I read a friend’s post about commitment.  No one could doubt my commitment to her.  I’ve fought for her like a lioness.  I’ve sold and given and wagered everything I’ve ever worked or hoped for.  All of it on a future that’s always been just out of reach.

If I could only find the key.

If I only had more patience.

If I could only put together the puzzle.

….

The game isn’t over.  But I’m tired and I want to blow the whole thing up.  Flip over the table.  Toss each piece into the fire and watch the puzzle burn.

But I’ve been here before.  And God knows I won’t stop playing.  How many hits can I take?  Hell if I know.  But it seems like a lot, and I guess there must be some sort of value in knowing that limit.

Can’t think of why, right now, but that’s okay.

I sure hope these steroids work.  The idea of poisoning her, making her struggling body work even harder, blowing out her adrenals and wrecking her digestion all for naught (and when we’ve all worked so hard and she’s been so good and brave to get this to this point) makes me go a wee bit insane.

I really, really can’t destroy my own daughter.

So this stupid medicine had better work.

…

Driving home with her.  My Ipod was last updated sometime before 2010.

And my scrolling fingers stopped on Foo Fighters.

What if I say I’m not like the others?
What if I say I’m not just another one of your plays?
You’re the pretender
What if I say I will never surrender?!?  

We started a new medication last week.  It’s a big deal.

For years I told her docs: “It has its place, but not now.  I can see using it as a ‘kick-start’ to her system. Like jumper cables to a car.  But the car isn’t operational yet.  What would be the point in continuing to jump-start a system without first restoring the engine?

We will first restore the functionality.  We must calm inflammation, restore digestion, and otherwise help bring systems online.  If the herbal and natural medicine isn’t strong enough for the final push, we will use it as ‘kick-start,’ but what you’re offering is not a solution.  It is not a long-term plan.”

What is ‘it‘?

Steroids, of course.

These days, I am informed the cool kids call it ‘gear.’  Personally, I liked how it was called ‘juice’ a few decades ago.  I find ‘gear’ just confusing.

“Did you bring your gear to the mountains?”

“Yup, I got the tent, the isobutane, the backpack…”

“No dude, did you bring the gear.”

I mean seriously, how confusing.

But, yes, I brought the gear.

History

Of course, the steroid medicine children take due to having some sort of serious health problem is not the same as the steroids bodybuilders take to get HUGE.

Did you catch that amazing headline I recently saw on a men’s magazine?

RIP THROUGH YOUR SHIRTSLEEVES

It was so testosterone pumping that I nearly started beating my chest and roaring like Kong right there, shredding the magazine and tearing products off the shelves.

Guys:  Who wants to ruin all their shirts?

Anyway.

Either way you shake a stick, a stick is a stick and it can hurt people.  Steroids, of any type, are incredibly powerful endocrine disruptors.

Goodness, how I have gone toe-to-toe with Adahlia’s specialists over the years.

Six months ago, I was challenging her hematologist, who said he just wanted her to have the “opportunity” to try steroids, to exactly what kind of “opportunities” we were talking about.

For if I had pursued the “opportunity” of steroids at 9 months old, as the Boston heme team had wanted, he would not be seeing the same little girl before him as he did now.

He could not argue me there — he knew exactly what I meant.

And, just 3 years later, the new guidance is never to start steroids until at least a full year (12 months) old.  Soon enough, I believed, the guidance would be no sooner than two years old.

“Certain things are irrecoverable,” I argued.  “And I am the one who must live with the decisions made on her behalf.  I am the one she will ask, ‘Why did you do that to me?'”

As I wrote in a previous post, I do like her current hematologist.  He has carefully not weighed in when I told him how we were trying herbal formulas, not officially approving them (because he can’t), but also not forbidding or causing a scene over them. He has simply stated:  “As long as they don’t cause her condition to worsen, I have no opinion.”

He has even admitted: “I have laid awake at night because I have destroyed the bodies of children [with steroids].  But I had to do it to save their lives.”

And at the time I replied, “And you had no choice with those kids.  But Adahlia has a choice.  Her iron is well-managed, the transfusions are working, she is healthy in every other way.  Her choice isn’t steroids or death.”

Transfusions continue to work well for Adahlia.  In fact, her last transfusion was just 8 days ago.  She lasted 4.5 weeks after her previous transfusion.  And she was sleeping and eating fine.  Her energy, at 4 weeks and 1 day, was great.  She was still attentive, athletic, and emotionally stable.  Not napping.  It wasn’t until 4 weeks and 3 days that I began to suspect that she needed more blood, because she was acting more irritable and did not want to be as physically active.  Still, though, she didn’t nap.  She was still eating.  And when we finally took her in to the hospital, her hemaglobin was 7.1.

It was a victory.  She was living a normal life with a very low hemaglobin.  In other words, her low oxygen levels were barely impacting her quality of life.

And yet, at that very visit, I told Dr. N., her lead heme doc:  “Put in a prescription.”

“A prescription for what?” he asked.  “Just a blank prescription?” he joked.

“Yup, I need some serious pain relief,” I replied, not exactly joking, but knowing that nothing on a prescription pad would address what was happening inside me.  “Blank would work, or write it for Oxy or Vicodin.  Ha.. ha..  No seriously.  You know what its for.  Prednisolone.”

This doc had been campaigning for steroids for years.  He was genuinely surprised I was suddenly asking for them without any prompting or persuasion.

For even he had to admit that we have Adahlia’s life on chronic blood transfusions completely optimized.  Dangerously high levels of iron in organs?  Not anymore.  Upset stomach, leg pain, and difficulty swallowing?  Not anymore.  Irritability and attention and inflammation?  Not anymore.

Her health is perfect… except she doesn’t make red blood cells.

And quite honestly, the last thing I want is to screw up our not-normal but survivable routine by adding something into the mix that could make her literally go crazy.

And yet, I did it.  I chose it.

And she has been taking steroids now for 8 days.  In fact, I just gave her the 8th dose.

How did we get to this point?

Because it was time.

It wasn’t time before.

Of course, I had hoped — desperately — that all my other tools would be enough.  The shonishin, the moxabustion, the Chinese herbals, the homeopathics, the nutritional supplements… for years we have adjusted our approach as one system and then another came online and she grew more and more robust in every way.  As the blood transfusions began to take their toll by increasing her iron toxicity levels (the body stores rather than eliminates iron, and too much is extremely toxic), we also began mitigating the effects of the blood transfusions.

And the result is that Adahlia is very, very healthy.  Her iron levels are low.  Her eyesight and vision remain perfect.  Her teeth are well-formed and without cavities.  She no longer complains of belly pain or leg muscle cramping.  Her mind is good; she has no signs of ADHD or brain impediment — something I’ve been very concerned about ever since my herbal mentor first met her at four months old and said:

“I know you are concerned about her bone marrow.  But that is not her biggest problem.  She has inflammation in her brain.”

I have wished, very much so, that we would be able to avoid the medicine that the docs had been pushing on us since she was 9 months old.  For her sake.  And our sake.

Because the side effects are not good.  I’ve listed them before, but a short list includes the inconvenient/cosmetic (puffiness / moon face and weight gain) to the very serious (uncontrollable violence/osteoporosis at age 8 / precocious puberty at age 6 / diabetes / adrenal failure / immune system compromise and other permanent damage to bones and hormonal systems).

This is to say nothing of the negative medication cascade, where you take a drug to stop one thing, only to cause three more problems that require three more drugs, that cause three more problems… and on you go.

Many parents of children with bone marrow failure are loathe to try steroids.  They fear being responsible for even more damage done to their beloved children.  They are terrified that they will lose the child they love to some sort of violent monster.

So why now?

1. Because we have gotten as far as we can go with natural and East Asian medicine.  We have even tried herbal cortisol adaptogens.  Not only did they not help her make reticulocytes (baby red blood cells), but her body did not want them when I tested them to see how her body would react to them.

The Chinese herbal formula we obtained from my Portland-based herbal mentor this past April no longer includes powerful anti-inflammatories aimed at her brain and marrow.  Her body no longer needs strong anti-microbial and anti-viral herbs.  Now, her body only wants gentle digestive and anti-inflammatory support.

Like any normal kid.

Homeopathic-wise, her body only wants a tonic for mental-physical exhaustion and one for adrenal support.  (Not surprising given all her body has been through, and the fact that iron can be deposited in the adrenals.)  It doesn’t need help with any major organ system except the adrenals.

Saying that we’ve gone as far as we can go is no failure of natural medicine.  Is it a failure of acupuncture that it cannot be used to repair heart valve defect?  Of course not.  That’d be like saying surgical medicine is a failure because it cannot stop back pain.  Acupuncture and surgery are designed to do different things.  They each have their niche.

Adahlia’s body is online.  It is functioning well.  We’ve repaired the engine.  If there was ever a time to apply the jumper cables, that time is now.

Why else is this the optimal time?

2.  Because I have so many effective tools to mitigate the side effects of steroids.  For example, many children on predisolone must also take prescription zantac or other medication to settle their stomachs and prevent reflux.  Dr. N offered it right off the bat.

But I declined, because with my tools, I knew she would most likely not need zantac, which of course has its own set of side effects, including damage to the proper production of stomach acid.  With my tools, we can calm side effects without a medication cascade.  I already know that a homeopathic that helps the stomach “go-down” works for her.  So I told him we’d let him know if we needed it.

More reasons?

3. I am taking an unprecedented two-week break from my practice later this month, starting next week.  Dr. N warned me that in 7 days, we’d start seeing moon-face and – if they are going to happen – we won’t be able to deny the violent mood swings.  My last two days at the clinic prior to taking my break would be days 9 and 10.

After that point, if there are very intense mood swings and violence, I will be right there to help her through it. This would give her body another 2 weeks prior to her school starting.  Two weeks where she doesn’t have to deal with anyone but me, and I’m ready for and expecting it.  Perhaps, by the the time school starts, her body will be adjusted.

Another reason:

I think I have to anty up on my word.

Ever since we found out something was wrong, folks have come forward claiming to be the ones that would have the key to healing her.

And I can’t really condemn them.  As a Reiki master, having seen Reiki “work” for folks who have tried literally everything else, I know its tempting to think that there is one “all-powerful, no-fail” technique.

But that’s a fallacy.

If Reiki was destined to cure her, it would have done it by now.

Like I said years ago, I don’t think “proving” the power of one medical approach is the moral of her story.

I think her story exists to illustrate the power of integrative medicine.

Integrative medicine means that every medicine has its place.

Prescription drugs aren’t “bad.”  Energy medicine isn’t the only thing that gets to the “root” of the problem (and there isn’t just one root).  Herbal medicines aren’t “foolish” or  “dangerous.”  Homeopathic medicine isn’t “quackery.”  Proper spine alignment is important.  So is communication and flow through the fascia.

Every medicine has its time and place.

The key is knowing how to use them.  How to integrate them safely and effectively.

While it scares me to put my beloved little girl on a powerful medicine that will absolutely rock her body and could very well destroy it…  the time is now.

And I know the warning signs.  And I can mitigate the side effects.

I will not let it harm her.  I will not let it do permanent damage.

Part of me being able to do this to her is knowing that the above statements are true.

I have the power to prevent it from harming her.

The time is now to allow it to help her… if it can.

4. She tested positive for predisolone.  

When we got the predisolone, I did a blind test of it versus filtered water.  The water was clearly neutral.  The predisolone was positive. Meaning her body wanted it.

I could not really believe it.  But the next day we were scheduled to do the first dose.  So we did it.

The next day, I retested her.  And her response to the steroids was even more strongly positive.  In other words, now that it had a taste, her body wanted the steroids more than ever.

Crazily enough, steroids were good for her.  Her body wanted their help.

5.  I know how to administer them to do as little damage as possible to her natural hormonal cycles.

Our bodies have natural cycles of cortisol and other hormones.

For example, you have a peak of cortisol in the early morning.  This helps you to wake up.  There is a natural dip, then, around 10:30 am.   This is the optimal time to drink coffee — NOT at 8 am or whenever you wake up.  Why?  Waiting until 10:30 allows your body to continue to make its own cortisol in the early morning instead of overriding it with coffee.  In this way, you preserve your body’s natural cortisol function.

Steroids are like cortisol in that they pull from the adrenals.  Given in the afternoon, they can keep you awake at night.  Given too early in the morning, they “take over” your natural cortisol spike.  You’ll stop producing early morning cortisol if you constantly drink early morning coffee, thereby becoming dependent on it.  Same with steroids.

Thus, I have decided to administer her prednisolone at 10:30 am.  Some folks choose to break up their dose of steroids to avoid stomach upset but an afternoon dose messes with their kiddo’s ability to fall asleep.  Because I don’t have to go to the clinic, and I don’t have to take her to school or camp, I am able to give the dose at one time whenever I want.  And that ideal time is 10:30 am.

6.  Steroids actually make sense given her case history and some things we’ve tried in the past.

Depending on how long you’ve followed this journey, you may know that this all started in my third trimester.

During our 1st and 2nd trimesters, Adahlia’s little baby pulse was strong within my own.

You may not know this, but in Chinese medicine, when we take the pulse, we are not just looking for rate and rhythm.  In each of the six fingertip positions, we feel the health of certain organs associated with those pulse points.  In the Right Kidney (or chi) position, experienced Chinese medicine colleagues could feel changes indicating that the baby was a girl.  The pulse was strong.  Sometimes, because it would make me smile, I would place my left hand over my right to feel her strong baby pulse myself.

But during the 3rd trimester, my right kidney went into failure a number of times.  It was extremely painful and debilitating.  But I was determined to carry her to term.  I managed to do so… and to have a natural, drug-free labor to boot.

But somewhere during my right kidney’s series of acute failures, Adahlia’s pulse dropped out.  I could still feel her alive within me.  The kidney failure was not officially diagnosed until months after her birth.  But no one can deny that kidney failure would be stressful for the baby.  It was at this point that I think DBA, which is a genetic condition that is often not expressed, was triggered.

From the Chinese medical perspective, the right kidney is associated with original chi.  It is sometimes called the Gate of Life.  It is associated with the Energy of Being Here, of Yang energy Come Down to Earth.

From an esoteric perspective, then, I think my kidney failure sort of scared her on a very deep, internal and genetic level.  It cut her off from the flow of energy that is required to bring a spirit down here to earth and keep it here. Yang energy naturally flows upward.  It needs a strong Yin container to hold it.

Blood is considered the Yin container for the Yang spirit.  When Yang reaches its greatest point, it turns into Yin.  In other words, Yin is formed of Yang.  While Adahlia’s problem is a Yin problem (a lack of blood), it comes from a blockage of original Yang.  Yin holds Yang here.  But Yin cannot form without Yang.

Esoteric mind-screws aside, I did an experiment last fall where I tried to boost Adahlia’s Yang via a non-herbal method.  To come right to the point, I tried Fever Baths.

A fever bath is an old, traditional method of raising body temperature to stimulate healing.  I believe it originated in Germany.  During the months we took fever baths, Adahlia’s reticulocyte count increased.  However, it did not increase enough to allow us to feel safe about skipping a transfusion.  (In fact, during this time, all her counts improved, including her white blood cells.)

What does this mean to me?

It means we stimulated her original Yang.

Chinese medicine views steroids as an extreme stimulation of original Yang.  It is not just lighting a candle at both ends, but sticking wicks all over the candle and lighting it from 360 degrees.

This is why folks on prednisone and prednisolone get “moon face” and puffy.  Extreme Yang requires a LOT of Yin to hold it.   The body’s response to such increase of Yang energy is to try to increase the Yin.

This is also why folks get hyperactive or irritable.  The boost of energy or hyperactivity is obvious enough — it is the excessive, uncontained Yang.  But why the irritability?

Because in Chinese medicine, we understand that all energy moves in cycles.

Irritability is associated with the Spring.  Excessive irritability can indicate that the person is depleted in the energy that comes before it, that he or she doesn’t have enough energy to properly fill the next type of energy in the cycle.  In this example, the Spring is weak because the Winter wasn’t deep enough… which is associated with the Kidneys.

In other words, we use steroids to boost the Winter/Kidney energy, but we are really aren’t adding to the system, we’re just turning up the ‘juice’ by lighting a candle at all ends and angles.  It is ultimately exhausting to the candle.  The person then becomes like a tree that doesn’t have enough water:  Brittle, inflexible, and liable to snap.

Like folks on steroids.

So how is it going?

Well, we don’t know yet.

Today, we went to get her labs drawn.  We will find out soon if there are any reticulocytes.

The suspense has been rather intense for me.  And the week rather exhausting, as I’ve been watching her like a hawk.

I am honest with my child, for better or worse (I believe better, but time will tell).  So she knows that she will gain puffiness in her face and body and her clothes might not fit right and we may have to buy new ones.

I’ve explained my rationale for trying them to her.  Because she really doesn’t want to do blood transfusions anymore, she is willing to try steroids now, when she was adamantly against them before.

On Day 1, when I gave her the first dose, she immediately ran to the mirror to check her face.  Poor dear!  I explained it doesn’t work like that.  So, she went to the den and sat down to read a book.  Nothing else remarkable happened.

On Day 2, we went to the pet store to get some good bacteria for our fish tank. I made the mistake of taking her over to the cat section to look at the kittens.   She became incredibly emotional, crying about how she wanted to take at least one home.  She said she couldn’t stop thinking about how they would all have to spend the night sleeping in metal cages… how they just needed to be adopted…

… it was tragic.  She continued crying the entire time we were in there, and all the time we were in the next store, doing our grocery shopping.  I had to push the cart and balance her not-so-little body on my hip as she sobbed into my shoulder.

On Day 3, she had morning stomach pain.  The homeopathic medicine stopped it.  But no great emotional distress.

The subsequent days, she slept in a little later than usual, and seemed to want to stay up later than usual.  In sum, she reported stomach pain on perhaps 3-4 of 7 days, which immediately resolved with the homeopathic medicine.

Emotionally, if anything, she’s been more cooperative and self-reliant than usual.  It’s been… fine.

Her appetite initially spiked, but resolved to her typical levels (ie, not as robust as I’d like it to be.  I wouldn’t argue an increase in appetite).

It has now been 8 days… a long time for a tiny person to be on a very high dose of steroids.

Dr. N. said that within a week, we’d definitely notice negative side effects in terms of weight gain and mood disturbance.

But again… she’s fine.

Is it because her body has been so well-prepared for this?  Is it because we’re still supporting her with appropriate and individually-tailored probiotics, herbal medicine, homeopathics, fish oil, and other supplements?

I’d like to think so.

Wrapping it up

Because this is the longest post ever, its time to wrap it up.  But I just want to say that our trip to the mountains was much-needed and awesome.

Joe was against it — the steroids had brought much uncertainty into our lives.  He said, “When everything feels so unstable, it is good to have a stable place to come home to.”

I told him I was in 100% agreement.  But we were going camping away.

I felt like I needed the mountain air… and well, the mountain itself.

And of course, we brought her “gear.”

Camping is big operation, and it can be especially tough to set up camp if you’re a relatively small adult and your helper is only 6 yrs old.  It took me over 2 hours to pack, and another 2 hours to haul our stuff up to the campsite and set it up once.

The first night, like every night for the six nights prior, I barely slept.  Instead of sleeping, I thought about the meaning of “vigilance” — and how having a sick child transforms one’s entire life into something like a vigil.  Not quite anxiety.  But a sense that one cannot sleep.  That one must stay awake.  Not necessarily because one is going to beseech or pray, although that often does happen, but because it simply feels necessary.  It is a physical need — not an intellectual or emotional choice.  We hold vigil for those we love — we give our minds and thoughts and time and energy to them.

The second night, however, I slept soundly.  She and I both did.

Immediately upon coming home yesterday, I felt a growing creep of nerves and stress.  But the mountain had worked its magic, and it was manageable.  Adahlia and I both slept soundly once again.

And today we tested her blood… and now we wait.

We will accept the news, whatever it may be.  I will digest it, analyze it, and ponder it.

And we will take appropriate action.

Because we do whatever’s necessary for those we love.

We give mountains.

And we accept the gear we need.

It’s hard, when you have one very particular goal in mind, to not get bogged down in the fact you haven’t been able to make it happen.

It’s easy to forget how far you’ve come. What you’ve accomplished. Ignore what you do have. (And what you don’t.)

And so, in the interest of cheering myself along, I’m going to make a list of all the things Ive done for Adahlia — the conditions that are typically associated with DBA that she doesn’t have, problems solved, problems avoided, etc.

Because really, it could be so much worse.

Problems Solved, Resolving, or Avoided:

1) Brain inflammation & tics (solved)

2) ADHD/ADD/Hyperactivity/Dyslexia/other learning disabilities (solved and avoided)

3) Violent “over-reaction” when upset & irritability (solved; what remains is normal or appropriate)

4) Frequent gut / belly pain (solved)

5) Difficulty swallowing & frequent hiccups (solved)

6) Frequent painful mouth sores / Canker sores (solved)

7) Low white blood cell count / neutropenia (solved)

8) Complete lack of own red blood cells (resolving… usually has at least some level of her own RBCs these days)

9) Elevated liver enzymes (solved, sometimes slightly elevated)

10) High (dangerous) levels of cardiac iron overload (now non-existent)

11) At-rest signs of neurological stress (sleeping with fingers rigidly flexed)

12) Moderate-high levels of hepatic iron overload (now low)

13) Diarrhea (solved)

14) Leukorrhea (solved)

15) Loss of vision and hearing (prevented through proper supportive therapies for chelation)

16) Need to do nightly needle-pokes for desferal IV chelation & sleeping hooked up to a pump every night (avoided through proper chelation)

17) Extremely short stature (avoided through proper iron chelation and refusal of long-term steroids as an acceptable treatment option)

18) Precocious puberty (I can’t imagine the idea of her entering puberty in 6 months, at only age 6!, avoided through refusal of long-term steroids)

19) Osteoporosis at a young age (Again, I can’t imagine her having osteoporosis at age 8, or in 2 years, avoided through refusal of long-term steroids)

20) Diabetes (avoidance of long-term steroids and proper iron chelation)

21) Adrenal fatigue / insufficiency / failure (avoidance of steroids)

22) Inability to breathe deeply without discomfort (resolving; just started working on this)

23) Fear of strangers / distrust of others / dislike of being touched (mostly resolved as we went along due to lots of positive touch, EFT, Shonishin, moxa, honest conversations, acceptance, and trauma release work)

24) Frequent colds / upper respiratory issues (solved)

25) Frequent leg pain of unidentifiable origin (solved)

26) Lack of appetitie (resolved; will now eat heartily right up to and on the day of transfusion)

27) Immediate exhaustion during or after eating (solved)

28) Transfusion reaction (requiring Tylenol, Benadryl, etc due to reaction to the transfused blood; avoided to date)

29) Antibodies against donor blood (avoided to date)

30) Heart defect (resolved) and damage to heart from iron overload (avoided)

… and maybe there’s more.

….

Mama’s done good work.

I can do this.

Let’s get to work!

Here we go.

Believe it or not, friends, that is a name of a little-known acupuncture point.

It doesn’t have a typical channel-number name, like many of the most-known points (such as ST36, or Stomach 36). ST36 and such names are actually very modern. This one’s considered an “extra point” because it does not “belong” to a traditional meridian that has been catalogued by channel and number. Like most “extra points,” its Western identifier is a string of letters and numbers that make very little sense. Here, let me find it for you: oh yes, it’s good old M-BW-32.

Reads like an auto mechanics’ parts manual, no? Useless.

Of course, it also has a Chinese name, and its Chinese name makes more sense. Acupuncture points are typically “named” in Chinese one of two ways: 1) the name is a description of anatomical location or 2) the name describes the function of the point, what it does inside the body. Either is obviously useful for when it comes to remembering where points are and when to use them. It makes so much sense, and it is why I have come to “think Chinese” more and more over the last few years.

Let me put it to you this way: If you get a meet a mom despairing over how her daughter is anemic, I can guarantee the words “Anemic’s Inspiration” will flash in your mind. M-BW-32? Not so much.

Fun insight: Flashes of point names and herbs are what’s going on in my brain whenever I talk to folks with medical problems (which is everyone). I just pretend to be normal.

Back to M-BW-32. Obscure, right? This (and the fact that acupuncture is very difficult, a doctor friend of mine is attempting to pass the national acupuncture boards again after a couple failed attempts) is why we don’t learn many “extra” points in chinese medicine school. We’ve already got enough to learn. M-BW-32 is the acupuncture equivalent of DBA for doctors.

Most haven’t heard of it.

But, I dug around in some dusty old books and found it.

First, a couple days ago, I pulled my GIANT gold-covered (yes, it’s got a gold cloth cover and it’s HUGE, like a bible read at Mass) combination Nei-Jing and Nan-Jing text from the shelf. It’s a pretty book.

(I keep it up high to keep my own little Anemic from being Inspired to add her own text to it.)

It’s also pretty amazing if you start to read it. It’s written question-answer style between an ancient emperor and his medical advisor. The emperor wants to know how to cure his people of various diseases, alleviate suffering, increase longevity, etc. His advisor responds. Reading it is like slipping into Alice’s tunnel into Wonderland. It is DEEP. Full of strange pockets of amazing wisdom and helpful advice. Love it. Big hearts.

I found some interesting stuff in it. But like Alice’s tunnel and Wonderland, it is not exactly linear. (None of Chinese medicine is. Or ancient Chinese thought. Drives us linear, robot-logical Westerners berserk and gives us headaches even as we find it fascinating… until a few years in and you realize something happened to your brain and now you think in expanding and contracting circles, too…. “Everything is Zero… everything is One….one and zero are the same and opposite at the same time…)

Anyway.

Interesting stuff. I took mental notes. Inserted post-it notes. And then found something worthy of immediate further exploration. I wanted to see what else was written. So I went to my bookshelf. Dismayed, I realized my Deadman (author of the #1 acupuncture point location text, no joke) was at the clinic. Darn. But, I still had “Acupuncture: A Comprehensive Text” — a textbook I had bought “to read in the future” with some scholarship funds I had won from our school bookstore.

Now, the ACT is an interesting book itself. Interesting because it is organized in a way that is mind-blowingly unfriendly to the new student of acupuncture. Seriously. Talk about a rabbit hole. But, among those who’ve been in the business a few years, many consider it to be “better” than Deadman. More authentic content. (Perhaps the power of rabbit hole? You can’t just peek your head in to get to your destination. You’re forced to dive in and explore.)

Finding something in the ACT is like going for a walk in a new city. You stumble upon your treasures. You build your map as you go.

And that’s how it was for me. I was intending to look up Geshu, which is a known anemia point on the back and DU15, a point on the base of the skull, hoping for further insight, some sort of clue to curing Adahlia’s condition.

After reading about Du15 and while searching for Geshu, I magically (thank you Angels and Divine Intervention) flipped open the book to the Extra Point sections of the back.

I found not one, but THREE very intriguing points for the blood in that section.

And that’s just ONE section.

And yup, one of them was called “Anemic’s Inspiration.”

I proceeded to develop a detailed treatment plan for building blood using moxabustion. (I don’t needle Adahlia. She has made it clear that she’s had enough of being on the receiving end of needles, and we acupuncturists don’t typically use needles on kids until at least seven years old anyway. We often wait until much later.)

All this blather and you know the most interesting thing? A few months ago, I was doing moxa for Adahlia and she said she wanted me to moxa a different part of her than I normally do.

To be honest, I’d been fishing blind for years for a point that would help Adahlia’s anemia. I knew of Geshu, BL32, GB39 (Sea of Marrow)… had used points for the spleen, for The Gate of Life…. but had never thought to open the ACT, and to be fair, those 3 extra points I mentioned aren’t even listed in the index at the back of the book for anemia.

That’s right. Flip to the general index for Anemia and you’ll find Geshu and Kidney Shu. No other blood points are listed, not Blood Residence, nor Blood Worry. Not even Anemic’s Inspiration is listed. (See what I mean about rabbit holes?) So I literally had to get around to reading these entire ginormous texts.

Sorry, that’s not the most interesting thing. (That’s me making excuses for myself.)

The most interesting thing is that Adahlia has ASKED ME TO TREAT THAT POINT.

Seriously. One time, very recently, she asked me to do moxa on the point that I later discovered was called Anemic’s Inspiration.

At the time, I did treat it. And I treated it a few more times, sporadically. I did it because I trust her knowledge of her body and I’m always fascinated by the wiser-than-I-could-have-imagined things that come out of her mouth.

But, I didn’t do it often. Perhaps once or twice every 3 weeks.

Funny thing? She haaaas been making a little of her own blood the last few months. Hm.

Not enough to skip a transfusion, but much more, and more consistently, then ever. Hmmm.

As you can imagine, now that I realize she was drawn towards a point that is actually labeled an anemia point, I’ve now begun a full-fledged campaign of treating it, as well as the others. We’ll do it daily for a month and re-evaluate.

In other news:

Adahlia had her first LIVE vaccine this past Friday. Yup, MMR. I decided to do it …

1) Because I want her to have it eventually

2) She just had a transfusion on Tuesday, so she was strong and had enough blood and energy to face it.

3) Her labs said she had a solid number of white blood cells to fight infection and her WBC counts have been normal the past few months.

4) She hasn’t been sick for almost 2 months, which is CRAAAAZZZY for her. (For the last couple of years, she had a continual cold from what seemed like October though April. And I think I know why she’s doing so much better this year, and that’s not the point right now.)

5) We are considering trying steroids in the next few months. You can’t do a live vaccine while on steroids because steroids compromise your immune system, and the results of putting a live vaccine in a weak system can be disastrous.

6) I wanted to wait until WELL out of the danger zone of giving kids the MMR, which is before age 3. (Don’t know what I’m talking about? Go watch “Vaxxed” the documentary. Spoiler: Don’t give your kid the MMR at 12 months. Wait until age 3.)

Here’s the amazing part of giving her the MMR vaccine: Adahlia had no fever. In fact, I took her right to school after the vaccine, and she did well. (She apparently did extremely well in math — and had incredible focus. Go figure.)

Now, I know a LOT of kids who get a fever and otherwise react strongly to the MMR. So I was prepared for Adahlia to get very sick. I was prepared for even a hospital scare. I half-expected it. But Adahlia did NOT get sick, not even a fever, and that’s because her immune system is apparently now a rock-star. It was prepared. It speaks to how healthy she truly is, except for the anemia. To prepare her for the vaccine and to help her process it (ie, the day before, and day of, and for the last few days), I have given her supplements to boost immunity, protect her brain, and help her get rid of toxins. These supplements included a high dose of Vitamin C, Fish oils, and amino acid antioxidants specific to the brain. (Moms, contact me if you want details.)

Friends, that stuff matters. It matters to “normal” kids and it is VITAL for kids whose systems are struggling.

I”ll never know if Adahlia would have had a seizure, or high fever, or autism, or other event if I had made different choices in her vaccine schedule and supplements. But so what? Adahlia is doing stellar. In my choices, I displayed the use of preventative medicine, and preventative medicine means you never get to know what might have been — how bad things could have gotten.

But I’d much rather wonder “what might have been” from this side than be wondering “what might have been” if I’d done differently. I’d much rather have her brain working well than wondering if it would have been possible to have prevented my daughter’s autism, ADHD, seizure, or other learning disability, and having to work to undo the damage.

I mean, its like quitting smoking. Sure, maybe you would have not gotten lung cancer, but its still a good idea to quit smoking in the hopes of preventing it, because lung cancer really sucks, right? Right. Not fun to try to cure it, right? Double-right.

I could go on, I could tell you many things, but the time has come for me to do something else.

Good vibes, love, prayers, light, healing energy, etc are always appreciated. I’d be thrilled if we could resolve this chapter, and move on, without resorting to steroids.

Be well,

Erika

I’d be more eloquent but I’m in that in-between place where my mind is full, I’m tired, and I’m just… waiting.

Waiting for dawn to come, her to wake, and motion to begin.

I know there are things I can do. To help me sleep the night before her transfusion. And no I don’t mean medication. There are herbs, supplements, homeopathics, meditation techniques… I know many things that work.

But truth is, I’ve actually been sleeping fine. In fact, I was dead asleep having a fantastic dream until the toes of a small foot gripped onto my calf and flexed rapidly, in spasm, literally tickling me awake.

Have you ever been tickled awake? It was a first.

That happened at 2:39 am and I haven’t been back to sleep since.

It makes me wonder: Does she want me to be awake these nights?

It would seem fitting. To hold some sort of vigil on the night before transfusion.

It’s a mix of emotion that simply cannot be processed and purged. The expression of any one thought or feeling exludes the expression of the other, and its all simply too “packed” to express anything. I feel it all. I’d like to scream-laugh-cry-hit-smile.

I feel trust-dread-fear-peace-joy-gratitude-grief-longing-panic-rage-generosity.

I do wish I’d rested more fully, though, so I’d have more energy and clarity and for what’s ahead.

Last month, I used a numbing creme on her arm. I numbed a good 6 inch diameter circle of area where she typically gets the IV, in her inner elbow area. We had a new nurse; never seen her before. Of course, I was suspicious. Things rarely go well with new nurses. But I gave her a chance. And I kid you not — she “stuck” Adahlia outside the numb area. Practically half-way down the inside of her forearm. Said she felt a valve in her cubit (its not a valve, its scar tissue.) Adahlia screamed like bloody murder… and I had been promising her, the entire car ride there, that it wouldn’t hurt because it would be numb.

I was so damn pissed.

But, unsurprised.

(A string of muttered expletives would like to escape my fingers right now.)

Breathe in, blow out.

This same nurse, when Adahlia later fearfully whined, asking her not to draw so much of blood because she needs it (the amount of blood drawn for labs was actually routine, but I think Adahlia just no longer trusted this nurse), said, “Don’t worry honey, you make new blood all the time. You’re making new blood right now.”

I almost didn’t say anything. I’m just so sick of educating folks who should know better. But it was so blatantly… dumb.

“Um… actually, no,” I said. “She doesn’t make her own blood. She has Diamond-Blackfan Anemia. That’s why we are here.”

Ugh.

At any rate, because I can’t talk about how I’d like to do some sort of tribal grieving-wailing-ferocious dance right now, let’s talk about dream catchers.

There’s chinese medicine, actually, for children with night terrors. Isn’t that cool?

Such things were actually treated with concern back in the day… because clinicians actually cared about the psychological well-being of children, and genuinely wanted them to feel safe, and knew the importance of a holistic approach to health, because mental stress can affect physical health and vice versa.

(Sorry, I’ll try to filter better next time. <mutter doctors mutter mutter nurses>)

Anyway, sometimes I give the herbal medicine to her, and it does work. But she’s got so much going on in that body of hers, that more often than not, I don’t give it to her (she likes it though; she says it takes good.)

We went to Denver Art Museum for the first time this past Sunday. We had a wonderful time. And, while there, we bought a dream catcher for her. Why?

We were in the gift shop. She walked up to it, picked it up, touched its feathers, and asked me what it was. I explained. Her eyes widened. I knew what she was thinking — that it was perfect for her. She asked for it, said she needed it, and of course we bought it.

Guess what.

The darn thing works.

For me, too.

(I’d been having a run of intense dreams myself. The other night, I was in an airplane crash, was burned alive, drowned, and had maze of concrete tunnels collapse with me inside it, all in the same dream.)

Anyway, moral of the story is: for bad dreams, while of course I’ll tell you that you should consider a chinese herbal formula for settling the Spirit, there’s also the dreamcatcher.

We’ve had it for two nights now and I’ve grown quite fond of it. I really do feel like it zooms around at night, collecting dreams, and only the “good ones” know how to find their way through the web.

I think my “New Baby” gift ideas for friends now has a new item.

Well, I think that’s all I can write right now. Adahlia will get blood in about 5 hours, and will live an extra month, if all goes well.

I am grateful. Sad. And very tired.

There are things I can do for it — powerful meditations with Reiki to gather energy and clarity.

I know this. And I know the dawn will come.

It’s just been a long night. Staying awake; holding vigil.

DBA is a baffling, confounding, and all around pest of a blood disorder.

I decided, about a week ago, that we should start making green smoothies. Why? Well mostly because I have this old jar of Amazing Greens Superfood and I thought we should use it. In the past, we’d also noted that Adahlia tested positive for AFA blue-green algae, which is helpful as a blood-builder and also for removing viruses from the blood stream.

So I figured, why not?

I tossed in several great superfoods. Blended well, and she drank maybe a cup once a day for 3 days.

Suddenly, she wasn’t the same person anymore.

When I went to pick her up from school on Tuesday, she lost her sh*t on me. I apologize, but really, that’s the only way I can describe it. I showed up and her smile turned to a scowl. I tried to put her in her coat to go outside, and she began shrieking at me hysterically. Truly. Shrieking. Then she wouldn’t go to the car and was literally running from me. The teachers ended up having to call all the other children back into the school so that I could calm and corral her alone in the yard. It was an incredible regression — absolutely mind-boggling. Probably the worst of all her 3 year old tantrums magnified by at least 10.

The next day we had a play date with a close friend. She’d been looking forward to it all day. But when the friend arrived, again, she wasn’t herself. At first she just seemed over-excited, dashing from room to room, and I could not get her to settle, no matter how I tried. Eventually, once the friend started crafting, Adahlia calmed down, but it was only a settling into a super-bad mood. She glared at us, refused to play, and refused to do, well, anything. I tried several methods of redirection and calming and reframing and nothing worked. Her little 5 year old friend even tried several methods. Our friends eventually left.

That day, I decided enough was enough. I decided to “test” her for her supplements. In the past, we’d flown out to my mentor’s clinic, Heiner Fruehof, to do testing with his MORA machine. My parents paid for flights for awhile, and then I bought tickets for as long as I could, and then, I had to give it it up. Necessity being the mother of invention, and of course there’s the hand of God or Fate, I happened to attend a workshop where the instructor, as an aside, taught Fascia Testing as a technique for choosing which Extraordinary Vessel points would be best for a patient. It’s similar to muscle testing, but relies not on muscle strength but on a subtle fascia response. Since the best and most plausible physical theory of acupuncture channels is through their descriptions as Bon Han channels — channels of flow within fascia, where nodes have been found to correspond to acupuncture points, and where communication happens faster than through nerves — using fascia to test makes sense to me. I have, after all, been developing my ability to sense its subtle changes for a decade now. I adapted this instructor’s fascia testing technique for points to be used to test supplements, and it works amazingly well.

Anyway, I did fascia testing of perhaps 30 supplements that she’s taken at one point or another. Not surprisingly, her body DEFINITELY DID NOT WANT the super greens. Nor did it want the algae.

Surprisingly, it also did not want any of her probiotics. Nor her B-6 multivitamin. Nor her B-12 with folate.

But it did want the pure folate. And fish oils. B3 (NADH) and DMG… and two Chinese herbal formulas — one for children to help digestion, and one for settling the spirit. (I give her the one for digestion in the morning, and the “settling” one at night. Let me tell you, her quality of sleep is remarkably improved.)

There were lots of other things we tested.

Oh, here’s something interesting: she wants Oxygen-Infused Water — Seriously. I bought it as a curiosity, even as I was highly skeptical of it and figured it was a “snake-oil” sort of medicine. Her body reacted extremely favorably towards it, though. I tested it multiple times to be sure, and then just shrugged and accepted it. (It basically tastes like salt water. She loves it.)

On one hand, of course, it is a blessing to be able to do this testing. Within 24 hours, her behavior was restored to normal.

On the other hand, it only serves to indicate just how aggravating this bone marrow failure / blood disorder can be. Green “Superfoods” are packed with healing nutrients. But her body doesn’t want them. In fact, it reacted violently against them. As well as to the methyl form of Vitamin b12, the “best” form there is. What gives?

What am I supposed to do? Test EVERYTHING we eat? EVERY vegetable? Fruit? Meat? Cheese? Tea?

These things can change every few weeks. I cannot imagine CONTINUALLY retesting everything.

But I suppose I must?

Recently, another parent posted how her child has happily gone into remission. She credits “healthy” lifestyle: Fish oils, goji berries (those are chinese herbs friends — gou qi zi), using essential oils instead of chemicals, and the like. I’m very glad her son is in remission.

But I think this story pretty well indicates that if a parent achieves remission for their child while stumbling through “heathy” lifestyle, it’s really luck. Luck and timing. When they try to mimic the success, most parents don’t get such results. It is not because the parent who got lucky “knew” more. It’s just that they just tried the right something (or a combination of somethings) at the right time and it worked.

I want to know why its working, or not working.

I am seeking common threads from these stories of both success and failure, and trying to come up with an understanding of what should be used when.

But in the meantime, it has become BLAZINGLY clear to me that these things are highly individual, both in terms of place (the child) and time (in the child’s healing journey). There have been times when Adahlia wanted the things her body no longer wants. Treatment is not static. It’s kind of a weaving process — certain base threads must remain the same to provide stability, but the pattern may shift dramatically, as one moves through the design.

Overall, the trajectory of the herbs and supplements Adahlia wants is encouraging. She has moved from “seriously medical” and strong herbs to more “nutritional” and mild herbs. We just had her annual hearing and vision test, and her chelation medicine has still not harmed her. We’ve been able to preserve her sensory function and health on many levels.

I do think I have an overarching big picture of what’s going on. But the details are still being sorted out. My hope is that when this story is done, I’ll have something truly valuable to offer people struggling with this illness — actual understanding of what’s going on and a roadmap to restore balance to the system.

While getting something out of a drawer this past week, a small slip of paper fluttered to the floor. It was a fortune from a fortune cookie — who knows from how long ago? It said:

Faith is knowing there is an ocean when you can only see the stream.

My darkest moments with this illness have been when I lost faith. Not necessarily faith in God, but faith that this was happening for a reason. A purpose.

I have explored this sort of work with myself in the past, as my life has not been, well, “happy” since at least young adulthood. I did not, for example, “enjoy” West Point and my military service. It wasn’t until I started working through this, and living in Portland Oregon, that I finally achieved true happiness, feeling peaceful and good about my life, who I was, and my future. I thought I had come through the worst. I began working with other people on this, who were also struggling with purpose and light in the darkness, and I truly thought I had learned the lesson. But then, Adahlia was struck with DBA, I nearly lost my kidneys post-partum, and I realized that there were still deeper levels to it. My faith was struck.

Having this depth of challenge has forced me to go even further and deeper into what I thought I had already understood. It pushes me to know it fully, so that I can become truly centered in it, so that nothing can sway me.

I am grateful. I have learned much on the soul level, the medical level, and the relationship level.

I am not sure what the ultimate lesson will be, or if I will be able to offer anything to anyone else of any great importance.

But, because of her need, I have learned how to balance out my five-year-old’s moods so that she is happy, friendly, and creative again. Sure, I would have preferred her to simply be happy and healthy without this incredibly taxing song-and-dance of medical stress, intervention, and supplements, but the bottom line is that I’ve learned a song-and-dance that is working.

Is there value in learning? Is there value in the journey?

I think so.

While I’d love to be in the destination, I think that the old adage is true, and the journey has value.

Yes, we are certainly in the stream. But I do know that there is an ocean out there, a whole water cycle.

And I’m rediscovering the power of that, on a deeper level. To know that the water cycle exists, and that we are small, but vital players in it. To not despair when my own stream runs dry, but to dive into what I do know of the water cycle, of the many other expressions and paths of water, to creatively seek answers and alternative courses of action.

Lov,e.

PS: Here’s a fun picture of me and Adahlia at her transfusion right before Halloween. We dressed as wolves and went to the hospital for her transfusion on Oct 30th, howling through the halls.