The phone didn’t ring or vibrate, but I walked over to where it sat on the kitchen ledge, anyway. My partner rolled into the climax of his post-work-week story, unaware of the 6th sense that had drawn me away. I glanced down and stopped breathing. It was 5:21 on a Friday, and “Colorado Children’s Hospital” was scrolling in illuminated text across my phone’s darkened screen. It could only be Adahlia’s hematologist.
I hesitated. It might be better not to know.
I snatched the phone up before the call went to voicemail.
“Hello, this is Erika,” I said, leaving my partner and the kitchen without a word or gesture. I stepped briskly towards the front porch.
“Hi, Erika, this is Dr. N.”
“Hi, yes, good to hear from you.” Was it? “Are you calling about the MRI results?” I continued.
“Yeah, I’m glad I got ahold of you. I just got back from radiology and discussing the MRI. I wanted to catch you before the weekend.”
“Oh, okay,” I said. He was discussing the results? My casual tone belied my anxiety. I pulled the phone away from my ear to make sure the volume was up. I could hear Adahlia shrieking as she wrestled her dad. The screen door shut behind me. It was just me and the news.
“Well, there’s some good news, and news that we can’t really trust right now, so I just want to warn you about that. We need to have it re-analyzed.”
“Okay,” I agreed, my heart pounding. I poured my attention into the phone as intently as as trapeze artist stares towards his partner’s outstretched arms. Would his words catch me?
“The good news is that the liver’s looking good. If you remember – I’m sure you remember – her liver iron overload was measured at 9.x. And the lower the number, the better for the liver; the heart is the opposite.”
“Right, yes.” The good news is the liver? Oh no….
“Well, the liver imaging came out really clearly, so there’s no doubt about the new number, and its 6.x. So that’s really good, and that’s something we can point to and say, ‘Alright, chelation is working.’ I think it’s really positive; its a really strong trend downwards.”
No! The heart’s not better?! Focus. Focus on the liver.
“A drop of 3 points in 6, 8 months is on par with what we might expect on this dose of chelation? Or is it better than average?”
“It’s good. It’s on the high end of what we could have hoped for. We’re definitely on track getting the iron out of the liver.”
I exhale. “That’s great,” I say. And I mean it.
“It is good. I’m really happy with it. It’s a great decrease, especially for an oral chelator.”
Because the intravenous chelator works better.
I take a breath. “Well, that’s great to hear. Especially since the pictures were so clear, so we can be confident in it.”
“I agree,” he says.
He takes a breath. I don’t.
“So, the heart. As I said before, I’m not as confident in the results on the heart, because the pictures were a little blurred again. Last time, they gave us this really low number for the heart, and then, because it was blurred, they said it maybe wasn’t quite so serious as they first said. So we went from considering it a RED situation, to well, a little less red.”
“Right, it was 4 milliseconds.”
“Right. So potentially really serious. So, I don’t want you to get too excited, because maybe this isn’t quite as good as they are reporting.”
Wait… excited? Good?
My inbreath catches and comes in tiny spurts, like a little songbird’s heartbeat.
“They’re saying that its a normal heart. And that’s just not believable.”
I might fly away. I step quickly down the front porch steps, as if pulled by a rope, as if to seek better reception. But I had heard him just fine.
“Normal?” If word selection is a game of pick-up-sticks, an echo is all I can come up with.
“Right, basically, they are saying that there’s no iron it. Which you and I know, given her last images, is just not very likely.”
I surge joyfully upwards. Like a hot-air balloon, I need something concrete to tether me. “As in, the report came back above 20 milliseconds?”
I want to scream and cry and jump and laugh. But I force my smile together and draw my mind through my emotions like a laser, like the West-Point-trained military officer I used to be. I demand answers from my people.
“Are they aware how bad it was before? Have they seen the prior images? Have they compared them?”
“That is why I went down there. I just got back from talking to them and showing them the last report. They are going to re-analyze the images and re-run the calculations. There is blurriness to the pictures, and I’m just not comfortable with these results. The situation in her heart is most likely improved, but, not to be the negative guy, I just don’t believe that its normal. Its just not believable.”
Because the heart is the hardest organ to get the iron back out of.
A moment of silence passes between us. I am walking down the sidewalk, headed towards the busy avenue. I stop.
“So.” I say, choosing my words carefully. “What you’re saying is: The worst case scenario is that things are better.”
He laughs. And it is an amazing laugh. How often does a pediatric hematologist laugh this sort of laugh with a child’s parent, a laugh without sadness or edge to it? “Yes,” he laughs, “the worst case scenario is that things are better.”
My eyes tear.
It is the first truly good news, the first real positive trend, the first actual news of improving health, with real numbers and real time behind it, that we have heard in – literally – 3 years.
“Well, that’s great news,” I say, and my voice has a smile in it.
“Yes, it is. Even if her heart’s not all better, I think we can all be really happy with how far things have come.”
I consider all the moxa I burned over the summer on her body, when it was too hot for her to sleep with a shirt on in our wonderful, non-airconditioned, cabin-like house. The points I had chosen for her heart. The mystical points just medial to her scapula, indicated for restoration of “vital organs,” ancient points discovered by ancient monks, points that I poured over in my texts and spoke to Joe about in the heat of summer evenings. I consider the moxa I had recently applied to these same points through her pajama top, now that it was cooler, using the Tiger Warmer tool.
I consider how I have finally reconnected with my Reiki Master lineage, whom I had lost touch with ever since my own Master died, and how I had appealed to them to send healing energy on my daughter’s behalf, to help her body get the iron out of her heart, to help it make it’s own blood.
No, I didn’t think moxa and prayer was fully responsible for getting the iron out. But I did think it was possible for the moxa to direct the energy of her body to her heart, and draw the chelation medicine towards her heart, and help her body focus on clearing and healing it.
“Well,” I say, pivoting and turning back towards our house, “I know its not really believable to you, but it just might be possible. I’ve been doing some very focused work on her heart from the chinese medicine perspective.”
And there are lot of people praying for her and sending her light energy.
“I know you have. And this speaks to how much you’ve done, and to patient compliance with the oral chelation, so I think its something you can be proud of.”
It’s so nice of him to say these things.
Except we’ve been compliant with the oral chelation since we started it, since she was 18 months old, and her iron overload only got worse. So it’s not about patient compliance. Perhaps, you mean, the importance of proper dosage. Perhaps the initial dosage was too low. Perhaps, as some suspect, too low of a dose actually leads to increased iron deposition, instead of iron chelation.
I’ve made it back to the front porch. Adahlia is standing there, picking leaves off of the vine that winds through the railing, and her dad is looking at me with interest.
“Well, I want to keep her on the oral chelator at this dose. Until the liver is also clear, until we see that her organs are completely clear, I want to keep her on this dose,” I say.
“I agree,” Dr. N. says. “I don’t want to make any treatment decisions – including any decisions about steroids – until we get better results back on the heart.”
Ah, I think. But I made an agreement with myself, and with Joe, just a couple nights ago on this very porch, before we knew the results of the MRI. When Joe had asked me, hypothetically, what we would do when we learned the results.
I had announced: “If her heart is the same or worse, we will do a steroid trial. No question about it. We have to. And if her heart is clear, we won’t. We will keep transfusing.”
He had shaken his head. “But,” he had scoffed, striking a stick against the railing, “that won’t be the case. It’ll come back saying something in the middle.” Something requiring a tougher decision.
“I know; you’re right.” I had sighed, looking out at the empty street. A few yellow leaves blew by. Nothing has been clear or easy for us. Why should this be? “We will just have to make that decision when we get the news.”
And as Adahlia likes to say: And now, here we are.
Dr. N. doesn’t know it yet, and he won’t be happy about it, because he wants to try the steroids. But as long as her results for her heart remain negative for iron overload, we aren’t going to do a steroid trial. Her recent MRI shows an unbelievable result. It is so unbelievable I take it as a pretty clear sign from Spirit that we should keep on our trajectory, that we should keep doing everything we can to find a cure from a natural and oriental medicine perspective. Steroids are still not right for us, at least not right now.
After all, if the moxa worked for the heart (and I really believe the moxa is primarily responsible for helping the iron chelate it), it can work to heal the bone marrow. The trick will be, as it has always been with acupuncture, to find the points that will work.
After hanging up the phone with Dr. N., thanking him for calling us so late on a Friday afternoon, I relay the news to Joe. He sits very still in the motionless rocking chair while I speak.
When I am done, he doesn’t laugh. He doesn’t even laugh when I relay the bit about the worst case being that things are better. It’s been too much of a roller coaster. He can’t laugh. He knows that Monday he may find out he should be crying instead.
And truth is, I can’t really laugh either. Not lightly. Not freely.
I can smile, though. And break into spontaneous dance.
So I do.