the day before she turns three.

And I wonder where the time has gone.

I already miss the baby I held.

And I mourn the fact that so much of our time was held in tears and fear and screams and stress and worry; medical procedures and IV pokes, herbal and pharmaceutical medicines, dissolved and ineffectively masked in juices and milk and ice creams and pleas to “please, please take this medicine, we don’t have a choice, this is the way things are, I am trying to help you.”

New baby joy? Ours got snuffed, scattered and drowned, became an ember, a kernel, that we blew on and coaxed and refused to let die despite the fact that everything we had hoped for had shattered into fools gold, and this little coal glows like a little lantern in our most private hearts, where no one can see, because no one else in our lives has been ravaged by this gale, and very few spend any real time  in the rain.

I lived several years in Portland.  I loved it.  I respect the rain.

She received a transfusion again just two days ago.  The ayervedic medicine I had given her did not increase her red blood cells, as her reticulocyttes were still effectively zero, although it may be too early to pronounce a verdict, for natural medicine tends to move more slowly than pharmaceutical.

Last night, I told her she had to toughen up, that we had to toughen up.  Days before her birthday, when she didn’t want the medicine, I told her that resisting and crying only makes it harder on both of us. That these medicines are our reality,  simply the way life is for us, and it was only going to get worse if these medicines didn’t work. 

There was little threat in my voice.  I felt like a sketch board artist, illuminating a story that no one wants to read, that everyone wants to believe is a fairytale.

You see, I had decided to give her a different herb, the one I found that is similar to hydrocortisone, which is one of the steroids used to treat DBA.  She had been crying, not wanting to take it, as it was foul smelling and tasting, even when mixed with milk and honey, which is how doctors in India manage to get those children to drink it.
Why haven’t I been using this herb? Two reasons: one, it’s high in iron.  This is not a small consideration, considering that her specialists are worried about the iron levels in her heart… And so am I.

Second, she did not test that she needed it when I took her to see the herbalist I trust most, who tests the herbs directly for her individual therapeutic value or negative response, using a machine that measures electronic and energetic response.  

She did test highly positive for needing a different ayervedic herb, one that is also a steroid, but with more phyto-estrogens and less testosterone.  So, I have been giving her that herb, which does not have high iron, and she does not mind.

And which did not increase her red blood cells. 

I will not say it did nothing — it is likely doing something very important in a hormonal layer that we can’t see, but it may not be strong enough to kick-start her bone marrow production.  She may need real steroids for that.  My hope is that if we do need to try steroids, that the herbs and herbal formulas that we have been giving her have laid a better foundation, so that the steroids would be a like a jump-start, and then we could wean and taper off them and her body could run on its own, perhaps still powered along a healthy path and supported by herbal therapy.

Her hematologist, believe it or not, is not only fully aware of my intentions, but now supports them, hoping also, that this might be the case for her.  I managed to turn some sort of light on for him two transfusions ago; I could see that I was no longer the crazy natural medicine acupuncturist, that he suddenly saw the reason and merit in my efforts and plan, and though he volunteered that it made him uncomfortable to work outside of protocols, I could see that I’d earned his respect.

That’s me: earning the respect of hematologists and other medical specialists, one at a time.  

It’s not something I necessarily care to do, because I don’t actually give a damn what people think, but it’s become a necessary part of navigating this river.

At any rate.  

My current plan, then, is to give natural medicine another couple months to see what she her body can do on its own.  In September, Adahlia will need to be sedated under general anesthesia for another MRI of her heart.  At that time, if she isn’t making red cells, we are going to try steroids.  

Sometimes, like in active or serious infection, antibiotics trump natural medicine.  The same is true for surgery: sometimes, natural medicine can fix the problem and make invasive surgery unnecessary, and other times, the best choice truly is to go under the knife.

At this point, Adahlias care looks like it is becoming more integrative than I’d like.   I am nervous that her chelation medicine isn’t working well enough, and that we will need to do nightly needle sticks into her belly and she will have to sleep hooked up to a pump in order to get the iron out of her heart.  If the MRI says that her heart has worsened, then I know we will have to do it.

If she is still needing transfusions, and her reticulocytes aren’t increasing at that point, then we are going to try steroids, and hopefully, if they work, it’ll give her body a break from the transfusions and influx of iron.

My intention, though, is to get her off of steroids as soon as possible.  I’m glad we haven’t tried steroids up til this point.  As you can see, she is an apparently healthy little girl, growing normally.  A short-term use of steroids, even if it’s a year (or God-forbid two) shouldn’t hurt her in the long-term.  It’s the years of steroids that destroy the endocrine system — that can cause adrenal failure, diabetes, osteoporosis, reproductive failure, and  even lead to things like needing all of ones teeth removed, because they are too porous, and needing dentures or, if one is lucky, implants.

So this is my birthday hope for her for this coming year:  that her heart stays strong and doesn’t show signs of structural or functional damage, that the chelation medicine draws the iron out of it, that this last-ditch effort at herbal therapy will be powerful enough to start RBC production without adding more iron to her heart, and that if it isn’t, and we must try steroids, that she has an immediate positive response and is able to be quickly tapered off them within a year, and is able to remain transfusion and steroid independent through the continued strengthening of her system with natural medicine.

I’ve got my fingers crossed, and hopefully now I’ll get some sleep.  I’ve  got rainbow cake batter to make, iced green with purple dahlia flowers and a yellow sun, and pink and yellow decorations to hang.

She was very specific as to her decorations and cake.

Happy Birthday, Baby.

I love you.

   
 

The above pictures were taken on June 30th at the hospital – her doctor and nurses entered her room singing Happy Birthday, bearing a cake and her first (and only) Barbie doll.

The nurses decorated the cake specifically for her.  I asked her, “what’s your favorite color today?” And she said “blue.”  

She had just finished with the transfusion when they arrived. She had been crying — she hates having the IV tape removed.  But she loves the Happy Birthday song.  She sings it (sometimes several times a day) to her imaginary friends and toy animals, and has me sing it when we have tea parties with cake, both real and imaginary.  I ask “whose birthday is it?” and she lets me know, and we sing.

The song and cake were transformative.  

Just like her blood transfusions.

Just like this journey.