FANTASTIC news! Send love to Adahlia!

Today, Adahlia is officially 4 weeks, 2 days since her last transfusion.

I had a different post half-way finished — one I will still post, because its full of lovely, general updates on Adahlia’s life — but I had to post this one first:

Today (Weds, Apr 30), we had Adahlia’s Hb checked via finger poke at her pediatrician’s office.  It was 8.3.  Last Friday (Apr 25), it was 8.2.

That’s right.  Her blood counts are not only holding steady, they may even be increasing!

And though its a little too early to say that with confidence (there is a degree of error in any blood test, so you have to allow that the true number could be either higher and lower), you can certainlpy say with confidence what her hospital nurse said, which was:

<GASP!>  “She’s holding!”

But I must say it, because it is very important to my own heart to say it:

This is the first time EVER — I repeat, FIRST TIME EVER — that her Hb has gone up.


Seriously, EVER!

I mean it.


…and that’s HUGE.


I cannot express what it would mean to me if she didn’t have to have transfusions anymore.  If she made her own blood.  It would be, quite simply, miraculous.

So, how did we celebrate?  Well, of course, we cancelled the transfusion we had scheduled for this coming Friday, and pushed it out another week. This is the second time in a row I’ve been able to cancel her transfusion (she was originally supposed to be transfused this past Monday, which would have been 4 weeks.)  Let me tell you, having to hold her and allow the hospital to give her an IV every month, that nothing sweeter comes to mind than getting to cancel a transfusion… unless of course, its cancelling two transfusions.

So back to celebration.  Well, it happens to be an incredible day here in Portland — sunny and 80 degrees.  It being Wednesday, we went to the Red Yarn concert, held at 10 am, by donation, for kiddos at Village Ballroom.  She danced, made friends in the funny little way toddlers make friends, and got to pet and feed a couple puppets (a snake, a groundhog, and a squirrel).  After, we came home, I pushed her in her backyard swing for awhile, we packed a picnic, and then we rode to the nearby park for a lunch of peanut-butter on cinnamon-raisin bagel, avocado, cottage cheese, and raspberries.  We played on swings and slides and she took off her shoes so we could spin barefoot in the grass.  Then we rode home again, taking a circuitous route because she told me she wanted more bicycle riding, and then now she is taking a nap on the bed, in all her naked-baby glory (except, of course, the necessary diaper.)

I could tell you all sorts of stories about how Adahlia loves bicycle riding. She has a front-seat, mounted on the handlebars of my bike, which is wonderful because it allows her to see and to feel a part of the big-people action. The seat is called an iBert and its fabulous.  It even has an unobtrusive little steering wheel so she can (pretend) steer.  But what is even better is when we take a turn – I tell her: “we’re going to take a right turn… put your arm out with me!) and she makes the signal with me.  Now, to be fair, her “left turn” and “right turn” look pretty much the same.  But its still wicked cute.  She absolutely LOVES riding the bike.  And she LOVES wearing her Bell Faction helmet.  Last night was our first ride, and I have a feeling we’ll be doing it daily.

So, I could tell you stories.  But I’ll save those to say simply that we are so happy and hopeful that this is a sign of Adahlia’s bone marrow kicking in to make its own RBCs.  We are doing lots of increased-intensity alternative and natural therapies for her, and of course giving lots of love and prayers.

Thank you so much for all your continued love, prayers, light, and energy.  Please continue to see her in vibrant health and wellness!

Love and light to you and yours.

Medical ID Bracelet

Last night, for an unknown reason, I woke up in the middle of the night.  My stomach tightened as, for no discernible reason, I began to worry about what might happen if one day Adahlia wandered off.  And then I thought about how sad it is when people steal children.  And I thought about how everyone who meets Adahlia pretty much falls in love with her.  And then, like a crazy person myself, I couldn’t stop thinking or shake the sickening feeling as I imagined looking over from conversation or gardening and discovering that she was gone.

Now, I’m not a risk-adverse person.  And I know what I am about to say might shock you or make you “tsk-tsk” but its the truth.  I like risks.  I like challenges.  They are part of Life and I find them enjoyable.  In the sliding scale of “adventurer” on the extreme left and “worrier” on the extreme right, I am definitely further to the left side than the right.  And I don’t think being a mom — if I had been a mom of a rather typical or healthy child — would have changed that.  Because it didn’t affect my pregnancy.

For example:

When just about a month pregnant, I zip-lined the over treetops in a haunted forest, spinning in my rope seat, arms out wide as I exclaimed in exuberance to the baby in my belly: “We’re flying!”  Then, when I was about 3 months pregnant, I insisted to Joe that we go skiing and, yes, I did tumble in the snow… three times… and each time, I laughed.  And when it came time to give birth, I chose natural, drug-free labor and delivery even though my right kidney had been swelling all throughout our last trimester, causing bouts of kidney colic and extreme pain that left me bedridden every few weeks.  I didn’t freak out.  I was excited, not scared, and I gave birth like a champ.  I certainly didn’t want any unnecessary medical intervention for me, or my baby.

Now, maybe you think such things are foolish, or even stupid.  But I didn’t and still don’t.  I took and take what I consider calculated risks, and I still consider them worth it.

So, no, I don’t think that as a regular mom, I’d be lying awake at night worrying that my daughter might disappear on me.

But, as a DBA mom, you bet your buttons that last night I did indeed lie awake… for hours.

Because let’s be honest.  A healthy little girl always has a fighting chance at survival if she disappears, especially if she is smart.  But lets say Adahlia wanders away: even if someone meant well and wanted to take good care of her but was afraid of the law, she’s only got 3-5 weeks at the most.  Worst case: let’s say it happens when she is days from needing a transfusion (like now).  Or let’s say we get into an accident of some sort and I’m unconscious or dead, but she survives and is wounded and bleeding.  What are the odds of survival for a little girl who doesn’t make her own red blood cells and nobody knows?

And I realized:  the time has come for a medical ID bracelet.

So I ordered one.

Fact:  There are not many toddler-sized medical ID bracelets.

This is a good thing.

But having to shop for one is sad.

I finally found one I liked; one that I could put up to 5 lines of information on the inside of a sterling silver ID, so her information would be more private.  The front says “see other side” and medics undo a piece of velcro to turn it over to read it.  The plaque is mounted on a kid-friendly, pink velcro nylon looking bracelet.  I also ordered the bracelet in purple, as the plaque can be changed out onto different colored bracelets.  Its only 4.5″-5.5″ long.

I put a lot of thought into what should go on the plaque.  In the end, I chose:

Her name.  Her blood type.   Her diagnosis and what it means: “DBA Red Cell Aplasia”.  The words “Needs blood transfusions.”  My contact info:  “Mom: xxx-xxx-xxxx.”

And then I thought:  But again, what if I am available or unconscious myself?  How can I make sure she’s taken care of if no one knows what her most current medical situation is?  In DBA, a child’s medical situation can change drastically in a month, due to iron overload issues and many others.  Just giving her blood might not be enough.  Well-intended but ignorant doctors simply wouldn’t know what labs to order, tests to run, and interventions to give.  And DBA is so rare that the truth is that most doctors are indeed ignorant of the disorder.  Most have never even heard of it.

So I put the name of her hospital followed by “pt” for patient.

This way, I figure, if she is lost and found, they will try to contact me.  And if they can’t reach me, they will contact the hospital.  Medical and other authorities will be able to call and say that they found one of their patients.  They could access her nurses and doctors, and her record if necessary.  And I know her nurses and doctors would immediately jump to help her.  In an emergency, they would eagerly take over her care, or give directions to whatever hospital has her in their possession at the moment.  Shoot, maybe the ambulance would just take her directly to her hospital.  Who knows?


This is the life of a DBA mom.

Yet, I think I will sleep a little bit better, tonight.

And before I go to sleep, if you are reading this blog, say a quick prayer to the sales girl at the baby resale / consignment shop who, in conversation, randomly told me that her little son had died. How she was looking forward to trying to get pregnant again some day.

I did not mention Adahlia’s condition.

What is a DBA diagnosis to a woman who has lost her own child?  A gift.

I can’t imagine how she manages to come to work at a baby store every day.

When we finally were released to go home from the hospital after Adahlia’s original week-long hospitalization due to severe anemia, when her hemaglobin had been brought up safely from only 1.9 – barely life-sustaining – and the doctors had confessed that they were worried her heart would fail at any moment, which is why they wouldn’t let me nurse her, because digestion might take the few, vital blood cells away from her heart… well, it was a day of mixed feelings.   I remember coming through the door and staring at all the baby stuff scattered throughout the house.   Feeling a bit out-of-body and thinking how strange all the bright and gay baby items looked in this new light, this near-tragedy that all the doctors had made a concerted effort to tell us wasn’t over.  Was just beginning.  All those little items of hope and joy looked, well, like a lost dream.  And I told Joe:

“If we hadn’t taken her in when we did… or if she’d died… coming home to this… I couldn’t have…”

And he had nodded.  “I know.”

Goodness, friends, what we endure in this life!  Oh, its amazing.  We are amazing people on this tough, beautiful, and challenging planet.

Love to all.

Games and Giggles and Growth

Adahlia is 17 days post-transfusion, or a little over half-way until her next one.  Its been so long since I updated readers on her silly ways that I thought I take a moment to share them.

Adahlia has several great passions these days, and pointing out buses and airplanes is one of them.  As we walk or drive, she will spot a bus and exclaim gleefully:  “ooo-ooooo!!” Doesn’t matter if its a school bus, city bus, short bus, or other bus — if its a big people-mover, she’s excited.

Its the same way for airplanes.  She’ll shout out an eager  “oooo-ooo!”  when she spots one and point it emphatically at it until whoever she’s with also registers the airplane.  Whenever she hears a plane or a siren that she can’t see, she points to her ear to let us know she’s hearing something.  She’s also started combining signs — she’ll point to her ear and then make the sign for bird to let us know that she hears a bird singing.

Adahlia also makes conversation:  She’ll also do a combination of signs when sitting with us at the table, adding in a myriad of facial expressions, babbles, grunts, gestures, and shoulder shrugs.  Its fantastic.  When I reply with “oh” or “really?” or “no!”  she’ll nod, or shake her head, and continue ‘talking’.  Its not unlike watching the base coach at a baseball game — they are utterly baffling, seemingly nonsensical, and very amusing, especially because they are so completely absorbed and serious about it.

Today was garbage day.  On garbage day, she’ll hear the big trucks roar up and ask me to lift her onto the counter so she can watch them from the kitchen window.  Up on the third floor, we’re at bird level.  Just the other day, we saw a scrub jay on the gutter less than an arms reach from the window.  Beautiful!

Adahlia adores water.  She’s got a pair of splashers with eyes and a mouth on the toes (each boot is supposed to be a butterfly) and after a good rain (or while its still raining!) we walk from puddle to puddle, stomping.   She remembers where the best puddles are and its impossible to tear her away from them until they’ve been good and splashed.

After her evening bath, I wrap her in her hooded towel that we’ve had since she was a newborn.  Its organic cotton — white with pale green trim.  She used to hate the hood but now she loves it.  She will tuck her chin so no one can see her face and walk out into the living room with her arms holding the towel shut around her.  She looks like a little monk, or ewok.  Then she’ll open her arms and flap them, while holding onto the towel’s edges, so that she has wings.  “Flap! Flap! Flap!  Fly away little birdie!”  I say.  She giggles.

She’s still digs music and bobs her head to the beat when we’re driving, gazing out the windows and well… grooving.  She loves the Mr. Ben and Red Yarn shows we attend almost weekly.  She likes to walk up to grownups she doesn’t know and begin dancing in front of them, bending her knees and bobbing side to side, until they start to dance too.  Then she breaks into a big smile and runs off.

Yes, runs.  She runs now.  She still needs a hand to go up and down steps but she’s off like a shot on level surfaces.

Adahlia likes to feed her stuffed animals and doll.  She’ll hold a water bottle up to their mouths so they can drink, too.  Sometimes, she also wants me to put socks and shoes on her husky puppy, one of her favorite animals.  Dogs remain one of her most favorite creatures — whenever she sees one, she barks “arf! arf!” and points or pats her leg to sign ‘dog.’

She’s got a thing for hats.  She gets excited when she sees a hat she really likes, and she often begs me to wear my wide sunhat around the house.  Her face lights up when I put it on, the way a boy’s face lights up when a girl wears a dress he favors.  She can be something of a tyrant about it — she knows what she wants and if she wants me to wear a hat, or put an otter puppet on my hand and to talk to her through him, well, she’ll warble plaintively until she gets her way.

We still go to playgrounds often, but we also recently found a red plastic baby swing at a local kids consignment shop.  There’s an amazing plum tree in our backyard, with a branch absolutely perfect, simply begging, for a swing.  In fact, it was one of the first things I thought the first time I saw the backyard.  I had planned to make an old-fashioned board and rope deal, but when I saw this, I couldn’t resist.  Its much safer… perfect for her age… and she loves it.

Adahlia’s a super-big helper around the house.  She loves the laundry room and always wants to go with me to wash clothes.  She also loves being carried back up the stairs in the laundry basket, perched like the princess and the pea on top of all the clean clothes.  In the apartment, she’ll help me dump them out onto the floor and after I’ve folded certain items, she’ll go put them in a drawer.

She’s mastered the art of getting into the big old rocking chair, and she likes to pull herself up into it so she can rock back and forth.

Adahlia still breastfeeds, but she also eats better now than she ever did before.  For awhile, I had to try every trick I could think of in order to get her to eat.  I would say, “Eat like a wolf!” and, growling, take a big, exaggerated bite of whatever I was trying to get her to eat.  She would laugh and mimic me.  But it worked.  I also tried everything I could think of to get her to take the blue-green algae supplement.  (Blue-green algae does a great job of removing toxins like heavy metals from the body, and it also helps with blood production.  Additionally, Adahlia ‘tested strongly positive’ for it, meaning that she needs it, and its important to me to give her the supplements she needs when she needs them.)  Nothing could get her to take the algae though — and I discovered why when I smelled it — it’s nasty!  (The manufacturers put it in capsules for a reason.)  Finally, I mixed it into a couple baby spoonfuls of vanillla ice cream.

Eureka!  Adahlia gobbled it up, and a new flavor — Algae Ice Cream — was born.  (Perhaps we’ll see it next at Jeni’s or Salt and Straw?)


Adahlia eating avocado

Adahlia is still taking several other vitamin supplements, as I am still working off the nutritional analysis we did for her back in the Fall. She is growing well and steadily.  It still seems as though the only real DBA sign she has is the issue with making enough blood.  She is still taking exjade to remove excess iron from transfusions from her system.  Exjade is chalky and she is never eager to take it… but she always does, eventually.

Adahlia is also taking the homeopathic spagyrics for her digestion (they seem to be working) as well as yet another formula of chinese herbs designed specifically for her.  As she has changed over time, the formula has changed.  Gradually, we are needing less and less of the extreme herbs.  Unlike Exjade, Adahlia eagerly takes the homeopathics and the chinese herbs.  Seeing the formula move towards a less drastic, healthier-person formula, builds confidence in me that we will continue to see Adahlia improve until she is better.  Perhaps all better.  Perhaps no longer needing transfusions.

DBA is a very tricky blood disorder.  When I describe it to natural medicine professionals, they all remark on how it sounds like an autoimmune condition.  And I always confess that though biomedicine says no, I secretly agree.  Of course, there is a genetic component to DBA.   But there is a genetic component to most disease.  Having the gene for something doesn’t mean it will be expressed and that you will suffer from it.  And it doesn’t mean that you can’t get it to go away, or heal it, or work with it.

If there is an autoimmune component to DBA, well, that isn’t exactly a great diagnosis — it is very, very hard to turn an autoimmune condition “off” once its been turned “on.”

Yet, it isn’t impossible.

These past few days, I’ve also been doing daily intensive reiki treatments with Adahlia.  She seems to really enjoy it, and they’ve been strong sessions.  I give her a little full-body massage afterwards, too, and she completely relaxes it.  It amuses me greatly.

Adahlia can do this.  She knows how to make red blood cells and she has the vitality and power to make more of them.  To cure herself.   I know it in my bones.

For my part, I am doing absolutely everything I can, from all medical perspectives I know, to assist her in that process.

And in the meantime, I put an otter puppet on my hand and a wide sun hat on my head, and we play!

Transfusion #24: Rollercoasters & Reprieve

Where to start.

Let’s see.  Well, Adahlia is now over 21 months old.  She’s had roughly 24 transfusions in 21 months.

Her 24th transfusion was last week.  The week prior, at 3 weeks since her last transfusion, I took her to get her Hb tested via a finger prick at her pediatrician (a relatively painless way to check for low blood levels, see Mama Bear for the battle I fought to get it done for her on a routine basis).  Adahlia’s Hb was 8.1.  Since we transfuse at 8.0, I figured we would definitely transfuse at our hospital appointment the following week.

So, we checked into the hematology/oncology clinic and Adahlia had an IV placed.  It was more painful for her this time, and I’m not sure why.  But it was one of those moments when I suddenly felt like I could feel what she was feeling, and the needle was sharp.  Adahlia screamed and reached out and pulled away and arched her back and tossed her head and cried giant tears. I held.

We waited for her numbers to came back and I anticipated a Hb around 7.3.  But it was only 8.0!  To drop a tenth of a point over a week’s time is nearly unprecedented – perhaps back in November 2012 something similar happened, but that’s it.  The other good news was that Adahlia’s reticulocyte absolute count (baby RBCs) was 16, which is higher than its been for at least the last 6 months.  Her white cells were in normal range, too, which is wonderful, especially since the medication she’s on (exjade) can cause them to decline.

The doctors gave me the option to go another week before transfusion and I called Joe to conference about it, but we decided to go ahead and transfuse instead of waiting a week.  Pros for waiting include fewer total transfusions, which means fewer risks associated with transfusions, including antibody reactions and iron overload.  But, we are already doing medication for iron overload and the pros for transfusing:  a happier and higher-functioning Adahlia with energy to eat and play and grow, outweighed the cons.  Plus, I had a surgery myself scheduled in 10 days.  A much-anticipated, tried-every-possible-other-solution, we-cant-guarantee-this-will-work-even-if-we’re-right-about-what-we-think-is-wrong-but-its-your-only-real-option-at-this-point, and you-wont-be-able-to-lift-your-daughter-for-a-month-if-we-can-do-this-laproscopically-or-two-months-if-we-have-to-open-you-up-but-we-wont-know-til-we’re-in-there type of surgery.  I wanted Adahlia healthy prior to it.

All things considered, I was very happy about Adahlia’s numbers.  The transfusion was going well.  Then, while Adahlia was practicing climbing in and out of the little red car they have in the play area, her doctor came to see me.

“I got the numbers back for Adahlia’s ferritin and I need to talk to you about it — but I don’t want you to freak out,” she said.

Okay  I thought.  This was the last thing I expected.  In fact, I had expected Adahlia’s numbers to be low enough to possibly take her off Exjade, the iron reducing medication.  (Repeat blood transfusions can lead to a build-up of iron in the blood, which gets deposited in the organs, leading to things like heart and liver failure.)  After a month of a half-dosage of the medication, Adahlia’s ferretin had dropped from the mid-800s to the mid-600s, and was last measured at 618.  What was it now?  800 again?  900?  It didn’t make sense for it to rise if she was still taking the medication but that’s okay, we could figure it out.

“Tell me, ” I said.  “I wont freak out.”

She hesitated a moment before reading in my eyes that I meant it.

“Its 1680,” she replied.

I couldn’t help it.  My eyebrows shot up.  But my voice stayed firm.


“Yes, 1680.”

A second passed, and then another.

“1680,” I said again, as if tasting the number on my tongue, to see if it was real.

“Yes, she said, and she moved towards me to show me on paper.

Then we were silent, the number hanging in the air like a badminton shuttle on a updraft.

“It has to be a mistake.  Can they retest?”

“I called down and left a message to see if there was something weird with the sample, or maybe the machine’s acting up.  It could be an error… ”


“Maybe they mistyped a “1” in front of the real number when they input it into the system,” I offered.

“Maybe,” she agreed.

Then, we were quiet again.

“If they have enough blood left from her earlier draw, I’ll see if they can rerun the test.”

I nodded.  But I picked up Adahlia and returned us to our curtained bay, shaken.

What could this be?

I contacted Joe with the news, and confessed to him what I hadn’t told Adahlia’s doctor:  I wasn’t entirely surprised.  You see, the foremost experts on DBA are the doctors and nurses of a special team in NY, and I (like most parents of kids with DBA) consult with a member of their team before every major decision is made.  The nurse on their team offers her consultation freely, because this disorder is so rare, so devastating, and they are desperately trying to collect patient information and connect the data points to understand it.

The NY nurse had warned me that a lesser dose of exjade (Adahlia was on a half dose instead of the standard dose) could result in iron getting redeposited back into the tissues.  According to the nurse, the exjade would be enough to pull it out of the organ but not enough to flush it out of the body, and so it could get redeposited, making the situation worse.

Well, that didn’t make any sense to me.  The half-dose was working — by every measure, her iron was dropping.   We (her local doctors and I) had her on a half-dose because she was only 18 months when we started it, and exjade was only approved for children over age 2.  I didn’t want her taking any more of it than was necessary, and since a half-dose was working, well, we’d stick with a half-dose.  (Some children have suffered loss of hearing, loss of vision, stomach bleeding, intestinal hemorrhage, and even kidney failure from taking exjade.)

Later, during the transfusion, Adahlia’s doctor came back and reported that Adahlia’s ferretin test was re-run and came back at 1500.  Still too high.  I told her what I had been warned about by the NY experts.  Adahlia’s doctor shook her head.

“I’ve never heard of that and it doesn’t make sense to me.  Exjade attaches to the iron and carries it out of the body; the body flushes out the exjade with the iron attached.  It shouldn’t redeposit it just because there’s not a lot of exjade in the system.”

I agreed that it didn’t make sense to me, either.  She said she’d look into it further.

“So, if its not due to taking a half-dose, then what’s happening?”

She hesitated.

“I think its possibly a normal fluctuation.  Ferretin is not an exact measurement — it shows a trend over time.  Let’s up her dosage to the standard dose and retest it in a week or two to see if it is dropping, or at least holding steady.”

I agreed.

And then I called NY.

I told them about the situation, expecting to be reprimanded about not heeding their warning, but much to my surprise, they didn’t seem to think it was due to a half-dosage.

“Has she had a fever recently?  Is she teething or has she had a virus?”  the nurse asked.

Yes, actually, she had a fever a couple nights ago because she’s getting in her last four teeth.

“Ferretin is an imperfect measurement.  It really provides more of a trend over time than any hard data.  If there is any inflammation in the system – due to a virus, or a teething fever – then the ferretin reading will go up.  But, its nothing to worry about and will go back down.”


“When would you recheck it?  Is a week too soon?”

“I’d actually wait until the next transfusion.”

“Really?”  Again, I was surprised.  “So, this isn’t a dangerous situation?   I don’t have to worry about her going into organ failure?”

“Well, it is and it isn’t.   She isn’t likely to go into organ failure because the kids who’ve gone into organ failure have been having transfusions for years, and its built up over that time.  Now, if her iron continues to go up, then yes, its dangerous. But a reading of 1680 isn’t necessarily dangerous in and of itself.  Some adults with DBA have ferretin counts in the 2000s and 3000s and they are okay.  What really matters is how much of that iron is actually in the heart and liver.  That you wont know until she gets a T2* test, which is done via an MRI, and we don’t recommend it for your daughter because she’s so little they’d have to sedate her for the test, and we don’t want to do that unless absolutely necessary, because there are risks with sedation.”

I tell you.  Every single transfusion this game changes a little.  Every few weeks, I learn something new.  Sometimes, its contradictory.  Usually, its apparent that the doctors are learning too.  Always, it blows my mind and leaves me like a palm tree, standing tall but imperceptibly swaying, swaying.

On Monday, April 14th, it’ll be two weeks since her transfusion, and though we’ve considered taking her to get a ferretin reading, I won’t.  They can’t get enough blood for a ferretin test via a finger poke, and I’m not willing to let them puncture her veins with a needle just for this reading — her veins are too precious — we are trying to keep them intact and avoid having to give her a port for as long as possible.

Besides, I also found out that though her ferretin has risen, her iron transferrin percent saturation has dropped from 90% to 70%.  This is a good thing.  This means that her blood has more “movers” available to carry out the iron — they are only 70% saturated with iron.  This was accomplished with only the half-dose.  Now that we are doing the full dose, I expect it will drop much further.

Now, according to NY, they don’t typically start seeing loss of vision and hearing with this medication until the saturation drops below 40%.  I do expect it to drop to 40% over this month, since its already dropped so much with just a half-dose.  If it does, I will most likely pull Adahlia off the medication (under the supervision of her local doctors, of course.)  NY advises against it — they suggest I keep her on it indefinitely in order to prevent the iron from building up.  But, I will not risk her vision and hearing.  I would much rather simply keep monitoring her iron levels very closely, and once they start rising again, begin re-administering exjade to chelate the iron.

(It would also give her body a break from the medication, which could only be good for her liver and kidneys.  It would give them a chance to rebound and heal a bit from all the work it takes to process exjade out of the body.)

The only “trick” to this is that the ferretin can fall to relatively low levels and there can still be dangerous iron overload in the organs.  For whatever reason, the Exjade simply doesn’t work to remove the iron from the organs, and when a t2* MRI is finally done, the situation is found to be actually be life-threatening.  But there is no way of knowing this until the MRI is performed.  In such cases, a stronger chelation medication, administered via an IV over a period of several days, is given to the child immediately.

So perhaps, if we are so lucky as to find out that Adahlia’s iron has dropped very significantly, I will be able to pull her off Exjade for awhile, but we will have to have her sedated for an MRI, just to be safe.  More consultations with the local doctors and NY will be done before determining all that, though.

And that brings us to this week.

Tuesday was the day before my scheduled and aforementioned surgery.  As the day worn on, I began to feel increasingly anxious.  It was a beautiful day and Adahlia and I had spent it together — playing in the sun, enjoying a children’s performer sing and play guitar, while we danced and I tossed her into the air.   I carried her everywhere — relishing the fact that I could still, in fact, lift and carry her.  I tried not to think about what would happen after my mom left in two weeks and I might not be able to carry her up and down our apartment stairs.  I tried not to think about her reaching up for me and me having to decline to pick her up.  I tried not to think about how she so often kicks my belly when we sleep together, and how I might be in too much pain to sleep near her and breastfeed her once I was released from the hospital.  I tried not to think about how I would be admitted overnight and her calling out for me in the middle of the night… and for the first time ever, me not being there.  Its not that I didn’t want to face these things.  There was simply nothing I could do about them.  The surgery had to happen.  I had no choice.

But at 3:30, I couldn’t take it anymore.  I packed up a bag and put Adahlia in the car. I was headed to the Sauvie Island beaches.  I needed to ground my bare toes in the silty sand of the riverbank.  I needed to see Adahlia laughing and playing by the water’s edge.  I needed the lapping waves and moving current to clear my head and soothe my soul.

As I drove, Adahlia fell asleep.  I turned my rearview mirror downward so I could keep an eye on her.  Traffic behind me?  Not nearly as important. I watched her head bobbing.  It felt so right to be leaving the city behind and enter the farmland.  And then it felt so right to leave the farmland behind and enter the wildlife refuge.  I parked the car, Adahlia woke up, and I carried her over the sand embankment to the river.

We played in the sand and watched a boat come up the river.  I did handstands and she laughed and I spun her in circles.  I took pictures of us together.  Then, my phone rang.

The hospital.  Not Adahlia’s, mine.


“Hi,” she introduced herself.  “Did you get the voicemail I left?”

“No,” I replied.

“I left a voicemail!  Oh, well, at least I got ahold of you.  Your surgery scheduled for tomorrow is cancelled.  I wanted to call so you didn’t show up and find out here.”

Surely, I misheard.

“I’m sorry… you said its cancelled?”

“Yes, your surgeon hurt his back over the weekend and can’t perform surgery, and he’s the only one in the hospital who is able to do this type of surgery.  We have to cancel all his patients for the next two months.  We’re so sorry.”

I struggled to wrap my head around this news.  To avoid premature celebration.

“Do you have any idea when its going to be rescheduled?”

“Well, you are high on our priority, but it would be June at the earliest.”

I suddenly had an image of my surgeon.  I really liked him.  A kind, dark-eyed, fatherly man.

“Is he okay?”

“Well, yes. I don’t really know that much about it so I can’t tell you much more.  But he feels really bad about having to cancel your surgery at the last minute.  He’s going to call you himself.”

We hung up the phone and for a moment, I did nothing.  Then, I giggled.  And laughed.

I still felt awful for my surgeon, but I was so, so happy for Adahlia and myself.  It felt like a stay of execution.

Adahlia wouldn’t have to be sad.  She wouldn’t need to cry and call for me and wonder where I was.  She wouldn’t wonder why I couldn’t pick her up and I wouldn’t have to show her my stitches and she wouldn’t point at them and say in her concerned little voice, “hurt.”

It is wonderful.  Adahlia still breastfeeds. She’s teething.  By June, or July, or August, or whenever I have this surgery, she most likely won’t be.  She might be able to walk up and down stairs by herself (she already can do it, if I am holding her hand.)  Just as I’ve put off this surgery for 15 months now, stating that I cannot do it because I simply have to be here for Adahlia, I simply have to breastfeed her, especially when she’s too tired to eat real food, and I have to carry her and comfort her, especially during transfusions and when she’s low on blood and feeling awful.  I’ve put it off and undergone three surgeries (one requiring a spinal tap, the others requiring general anesthesia) in less than a year to try to stabilize my kidney and preserve whatever function remains in it.  But after the last stent failed to hold and I had to have an emergency stent placed, the doctors finally got me to agree that the time had come to “find-and-fix” the problem.

Except Adahlia still breastfeeds, especially at night.  And is teething.  And requires me to sing or hold her until she falls asleep.  And needs me to help her up and down stairs, to hold and comfort her during transfusions.

Amazingly, this can all continue, as the surgery has been postponed.  By an act of fate, or God, or…. Adahlia’s guardian angel wielding a golf club???… who knows.  It’s been postponed nonetheless.

And though I think my surgeon is a dear man, I celebrate.

The time for surgery is not now.   Adahlia’s world is secure.  I am here for her in it.

And, oh, that makes me so happy!

It goes to show how a misfortune for one (or some) is a stroke of luck for another.

How everything can change in an instant.

How one action or event ripples outward, touching more lives than can be imagined, and forever altering the future.

How fast this world turns, turns, turns.

How fast the river flows, carrying time with it.

While we rest on its shore, holding each other and spinning, letting it race by.