Z.E.N. Watch

Zoe's Donor

2010-05-06T21:11:00.000-07:00

Meet Elizabeth and her sweet family! She and I have been having quite a correspondence--some interesting things have come up.

More about that soon.

And now, a word from our donor!

2010-04-29T13:18:00.000-07:00

Dear ones~

It's been long since I've posted but, as I've said before--no news is great news. Zoe is just an amazing and thriving little light.

I sent her donor a thank you card about a month or so ago-- I wasn't allowed to provide any specific details about ourselves, including names and where we live. The marrow donation system requires anonymity until a year after the transplant, and then consent forms must be filled out indicating what information would be okay to share.

Here's my thank you note:

Dear Donor~

Across from me is a darling, vibrant, healthy, spirited, and very much alive little two year old. She is our only child-- and she is here today because you cared enough to sign up for the bone marrow registry and make your very cells available to save her.

How many people do you know who can say that they know they have personally saved a life?

Well, you can because you did.

My husband and I are so grateful to you and for you. Thank you, thank you. The words don't express the depth of our gratitude, but know that the sentiment is there.

Bless you!

Signed,
Very Grateful Parents

PS. We are sending in a form stating that we would be willing to let you know more about our daughter should you like to know more about the little person whose life you saved. Namaste!

Not 30 minutes ago I received a lovely, sob inducing email from our donor, who lives in Florida. I will post the picture of her and her family she sent me if she gives me permission to do so:

Dear Kellie and Zoe,

I received your email today and could not wait to respond to your beautiful letter. Your kind words and thrilling news of Zoe's health brought tears to my eyes (numerous times) and to everyone here in Florida. We have all been praying for and sending healing thoughts to Zoe since last January.

When I found out a year ago December that I was lucky enough to be a perfect match and possibly save someone's life I felt like I was given a gift. Your letter was another gift that I will treasure.

My boys and I love to watch the television program Extreme Makeover, Home Edition. Over tears, we talk of how lucky Ty and his crew are to be able to help families improve the quality of their lives by giving them safe homes, paying their bills, sending kids to college, etc. On the day that we found out that I was going to be able to donate my marrow to help Zoe, my middle son, Dustin, looked at me and said, "now you get to be "Ty Peddington" too". And with your news, I did feel a bit like Ty. Honored, and ecstatic, that I was able to help improve the quality of your family's life.

Kellie, I can't imagine the heartache you have all gone through over the past two years. You must be savoring everyday. I bet there will be no "terrible two's" in your home.

I don't believe in coincidences, so I find it interesting that you are from Seattle. I was born in Bellevue (many years ago) and my dearest friend is a pediatric cardiologist at Children's Hospital and at the University out there. Coincidentally, she had her first daughter about two weeks after Zoe had her bone marrow transplant and I was out visiting her last March.

Thank you so much for sending me the update of Zoe's health. It means the world to me.

Namaste,

Elizabeth

P.S. I have attached a picture of my family: my husband, Daren, and boys Jonah (13), Dustin (11) and Trey (7).

Wowie, wow. Ain't that just a jolt of joy for your day? It certainly is for mine.

Odds and Ends

2010-02-28T20:52:00.000-08:00

Man, amazing how easy it is to get out of the habit of blogging. To think that I did it every night for months...

So, we did take Zoe in for her one-year-post-transplant meeting, and it was full of hopeful news. Prior to the meeting she had to have a major blood panel run, an x-ray to survey her bones and a dental exam.

The x-ray showed that her bones were no longer the characteristically too-thick bones of an osteopetrotic child, but rather that they were now on the thin side. There was now plenty of bone marrow space; the thinness was a result of prolonged steroid use for the treatment of GVHD.

Blood counts were all normal save for elevated eosinophils,a possible indicator of the presence of chronic GVHD. Of interesting note, her lymphocyte levels are completely normal for her age, which is pretty well unheard of for someone this point past a bone marrow transplant.

Given all of the test results, Dr. Carpenter decided that it's time to wean Zoe off the steroids and Tacrolimus (the major anti-GVHD drug) to see how she does. She's been completely off of the steroid for her gut since a week after the meeting and starts the Tacrolimus taper tomorrow. If she has a flare-up of GVHD as a result of the taper then they'll likely put her back on Tacrolimus as well giving her a brief burst of prednisone to deal with the flare-up.

Hopefully it won't come to that, but I have to constantly remind myself that GVHD is highly likely in Zoe's case due to her having a stem cell transplant (which comes with a high rate of GVHD--especially when from an unrelated donor).

But. I don't need to borrow trouble.

The super great news was that Zoe was given the all clear to go out in public and interact with the world! This has been such a great new experience for us all. To be sure she is still immunocompromised (due to the Tacrolimus), but the SCCA folks find that when the critical year of isolation after transplant is accomplished, it's more important for the person to be socialized and integrated into a more normal life than for them to be protected from all germs. Certainly we are to still keep her away from sick people if possible and continue to practice good hand washing practices while dealing with her.

I took her back to her PEPS group for the first time since we quit it almost 2 years ago now. What a trip. Zoe spent much of the evening fretting with her fingers in her ears as it was louder, with two-year-olds yammering and parents talking over them, than she was accustomed to experiencing. It's going to be a bit of work to push her comfort envelope to include more chaos and cacophony.

Among the new stuff she has been enjoying has been our sojourns to places where she can cruise around in the gait trainer that we've been borrowing for her. As she doesn't yet walk, the gait trainer gives her the ability to experience walking while being supported. She cruises around the park or the gym (depending where I take her) and pauses to do a little happy dance, stomping her feet and bouncing up and down.

The girl knows how to attract attention.

We try to take her out for physical activity like this every day; gradually our parental experience widens as her horizons broaden. Just as Zoe is delayed in many skills and abilities for her age, I feel like a remedial parent who is trying to figure out what to do with a 2 year old who is now allowed to go out into the world.

How, exactly, does one do this??

Zoe has two new obsessions (crackers, alas, have fallen by the wayside): chairs and the piano.

"Chair!" "Chayuh!" "Chaaaaaayuh!" She loves to be sat into one--especially with arms. I took her to a story telling evening for kids at the local library a couple weeks past, and she spent the entire time she was there saying "chair!" over and over again while she sat and seat-danced in the one she was sitting.

The piano is another love for her. While I or Jeff sit at the piano she sits on our laps and moves our hands like a puppeteer, providing the rhythm for the songs she knows while we supply the melody. Lately we've been sitting her to the side of us at the keyboard in her high chair and doing duets with her. She plunks away happily at the upper keys while one of us noodles at the lower keys--and it all sounds surprisingly nice. 'Course, we've got the biased ears of doting parents, but as we're not trying to sell tickets I think that's alright.

Check the Youtube link for more additions in the coming days--you'll get to see the duet above in action.

Day +365

2010-01-21T22:12:00.000-08:00

It's been a year to the day since Zoe's transplant.

She's doing great, so great--but you've probably gotten that general idea from the last several, though infrequent posts.

Next week we go to SCCA on Monday and Wednesday for check-ups and conferences that constitute her one year anniversary check-in. Last time we saw Dr. Carpenter it sounded like he'd be starting her tacrolimus (anti-GVHD medication) taper at this one year mark. We'll have more news on that, as well as on other "next steps"after next week.

As I am short on time for words, here are a couple videos that show how far our little Z.E.N. girl has come. The first is of her taken one day before transplant. It was hard for me to watch again--she's so doped up and weak in the vid, but it shows her spirit shining through.

The second one was taken of Zoe just today.

Enjoy.

Happy 2nd Birthday, Zoe!!

2010-01-06T20:42:00.001-08:00

We thought it only fitting her special cake would be made of crackers.

Piercing the Darkness: Developments in Optic Nerve Regeneration research

2009-12-21T22:59:00.000-08:00

Today we leave the gathering darkness behind and welcome the return of the Light:

Happy Solstice, Beloveds!

Zoe is blind, that we know, and at any other time prior to this point it would be safe to say that she would be blind for life. But with technology and scientific advances happening almost as fast as they can imagine it, there is a chance that Zoe may get to see some day.

I had heard of people traveling to China to receive stem cell therapy for optic nerve regeneration, but not only are the treatments prohibitively expensive (at least $20K per treatment, and they recommend multiple treatments), but the results they have are limited. It all seems a bit too experimental and unregulated to me to even consider considering it.

Closer to home I discovered the Schepens Eye Research Institute online and made use of their "patient liaison", Richard Godfrey, to get educated on what they know about developments in optic nerve regeneration. The following is some text extracted from literature he sent me.

Regenerative Research:

As our knowledge of stem cells has expanded, so has the breadth of our research. A few short years ago, all the focus was on embryonic stem cells and research was limited by the ethical issues and related federal funding ban. Since then, we also have access to progenitor cells, adult stem cells that also have great potential without some of the limiting factors of embryonic stem cells mentioned above. Now, we have discovered that the human body has already existing, dormant stem cells in the central nervous system (CNS) which includes the spinal cord, brain, optic nerve and retina. With both embryonic stem cells and adult stem cells, additional research needs to be done to both develop consistent sources of stem cells and develop a surgical or other stem cell delivery technique. This new approach of activating already existing, dormant stem cells may eliminate the need for these added steps. In addition to knowing that these cells exist, we also now know the molecules that are responsible for that dormancy and we have identified the drug that can activate them. This drug then is likely to become the foundation of a new drug that will both activate and coax these cells to become the kind of cells needed in our goal to restore vision.

In optic nerve regeneration, we know that there are three barriers against regeneration we need to overcome in order to develop a therapy. We already know that the original drug will overcome the first barrier (dormancy) and the second barrier (scar), but the third barrier still must be overcome. This barrier comes from the proteins of the myelin (sheath covering the optic nerve) that send signals preventing regrowth. So the goal is, using the original drug as a foundation, build a new drug to overcome all the barriers safely and reliably.

At the Schepens Eye Research Institute, an affiliate of Harvard Medical School located in Boston, our regenerative center, The Ocular Regeneration Research Center, is made up of 3 separate laboratory teams exploring the great potential of stem cell and gene therapy technologies. The goal of all the labs is the repair/regeneration of the retina and optic nerve. Both are made up of nerve cells, which share the same barriers to regeneration that we are working to overcome. The real strength of Schepens' regenerative research is these 3 labs, 3 research teams, with varied approaches, working collaboratively, are making the idea of vision a reality in coming years. It is a very powerful combination.

Some of the group's individual accomplishments include:

Dr.Feng Chen's first ever regeneration of the optic nerve in mice
Dr. Michael Young's years of transplanting brain and retinal stems cells into mice and pigs in preparation for the next step, human retinal damage repair/regeneration
Dr. Kameran Lashkari's novel, new discovery of adult progenitor cells from the retinas of premature babies that seem to migrate to damaged optic nerve and retina
Dr. Chen's discovery of the mechanism to reawaken already existing, dormant stem cells in the retina, optic nerve and brain
Dr. Young's discovery of the molecule in stem cells that is the key to integrating transplanted nerve cells into damaged tissue.

Well, that all sounds promising, eh? But it's not only optic nerve regeneration that might allow Zoe to see in the future. Technology may light up the darkness for her.

The Brainport Device is an amazing doo-dad in development that allows blind people to actually experience vision in the brain via the nerves on the tongue.

Say what?

The article (linked above) can explain the workings of the device better than I can, but remember that it's not really the eyes that see, it's the brain that sees--the eyes just give it the information it needs to experience vision. The Brainport device simply gives the brain the information it needs through different nerves. It's all very heady stuff, but I am just so impressed with the brain that thought of this whole concept in the first place.

For those of you who'd like to see the unit in action, check this video out:

(And, speaking of videos--check the YouTube link for about five recent video uploads of Zoe stuff.)

---------------------------------------------------------------------------------

On the home front, we're still all doing really well--so nice to be redundant on that subject!

We took Zoe in for a year-post-surgery-check-up with Michael Cunningham (always a pleasure to see him), and he was well satisfied with Zoe's progress. Recent CT scans showed definite signs of bone remodeling in her skull, as well as a gradual evening out of her bumpy-headed appearance. He felt like we shouldn't even consider the idea of a follow up surgery until Zoe's about 5 years old (as opposed to the usual 3 years of age for most craniosynostosis patients); he just felt like she's been through too much already and that another procedure so soon could 'break her".

We're fine with that approach.

Zoe also had a check-in with her transplant team at SCCA with accolades on that front as well. The extensive labs they drew showed that she "has an immune system" and that it is more robust than most patients this soon after transplant. To be sure, we still have to take care not to expose her to sickness as she is immunocompromised compared to the average person, but good news nonetheless!

Zoe is thriving on the whole food purees we are feeding her fresh from the Vitamix through her G tube. Although certain to be filed under "To Much Information", her poops are finally normal for the first time in a year, making it lovely for her not to have to suffer awful, chronic diaper rash (and for us not to have to deal with diarrhea all day long). Although concocted to meet supposedly all of her nutritional needs, the formula she was on for 9 months simply wasn't agreeing with her as much as this whole food mix we're making. Go figure.

Though she's entirely tube fed, Zoe's recently discovered that she absolutely LOVES crackers. Not to eat, but to suck and lick and taste. Her official first word is "Keh-Keh" (cracker) and she asks for them all the time. I mean, incessantly. First thing when she wakes up (at 5am) in the morning, and pretty much all day until she goes to bed. Crackers have supplanted the brief mommy obsession she had--which is both a relief and a "Hey.....! Really...?"

Really.

Jeff and I are good, so good. To be sure we're dealing a bit with cabin fever, but that's a sickness we are happy to manage. I'm back to learning Braille after a long hiatus; Jeff's teaching himself Beatles tunes on the piano. This Christmas is very low-key--no presents, no decorations, no fuss. We will spend time with family both from in and out of town, so the gathering of the Newton-Cormey-Rapp-Nielsen-Bell-Connor clans will be a good (and loud) time.

Zoe will add to it with her screams no doubt--she's been perfecting them and I'm looking forward to showing them off. Oh, and her cuteness, of course.

Abundant Gratitude

2009-11-26T11:57:00.000-08:00

Wow. Here it is. The most meaningful Thanksgiving of my life thus far. My heart bursts with gratitude that this hell we have toured, this valley of shadow we've traversed has opened up to such a glorious mountain top.

Our girl lives! She thrives.

I'm grateful, so grateful.

Thank you for sharing this journey with us, for sending comforting and supportive emails and comments, for lifting us up, for visiting, for holding us as we cried, for rallying the troops, for bringing food, for grocery shopping, for sending money, for encouraging me to write when I've been silent---thank you for loving us.

I'm grateful for my rock of a husband who is the strongest man I know. Ever present, ever nurturing. What a lucky, lucky woman I am.

I'm grateful for SCCA, for Seattle Children's Hospital and all of the wonderful people who work there, for transplant technology, for modern medicine, for living in Seattle where we had access to world class health care, for chemotherapy (and I NEVER thought I'd say that), for very, very smart people.

And mostly, I am grateful, so deeply thankful for an anonymous woman who gave of her very genetic substance to an unknown baby girl in the knowledge that she could possibly save a life.

I'm grateful for her social conscience that had her sign up for the registry, for her sense of responsibility that had her step forward when identified as a match, and for her tenacity to follow through with a procedure that wasn't very pleasant--all in the spirit of possibly being able to make a difference.

My heart catches every time I think of it; the magnitude of her gift is so overwhelming.

Yippee! This crazy existence we call Life is such a ride--and it is far from over yet. But at this scenic overlook we've paused at to catch our breath and stretch our legs it's looking pretty damn gorgeous.

E ticket rides don't have nothin' on this.

Not GVHD!

2009-11-04T22:07:00.000-08:00

Doctor check-in today gave us the good news that Zoe's rash was not GVHD. Its responsiveness (even though it took several days) to the Benadryl indicates that the rash was likely a delayed reaction to something--some medication probably--having to do with her G Tube surgery.

Hoo-ray!

Also in the Good News Department, Zoe's liver enzymes were normal for the first time since her transplant.

Yay!

She fell asleep on the couch tonight at 5pm, which means she'll likely be up at 3am.

Boo!

But I'm not the one who is on Zoe duty tomorrow morning--

Yipee! :-)

Look, Ma-- No Tube!

Rash?

2009-11-01T22:19:00.000-08:00

Haven't posted an update about the rash because I don't really know what to say about it. It's diminished some--actually more than some, but she still scratches herself quite a bit. We'll know more on Wednesday when we go in for her regularly scheduled check-up.

Other than that, Zoe's doing well and pretty well recovered from the surgery. Tonight was a two barfer, so the bedding and jammies had to be changed twice, but in general it seems like maybe she's barfing less than with the NG tube.

I learned that Vita-Mix will sell discounted demo models (lightly used motor, new pitcher, full seven year warranty) to people with medical conditions that would benefit from the use of their blenders. G Tubes definitely apply.

Keep forgetting to take pictures of her without all the nasty tape on her face now that the NG tube's gone--will post some as soon as I coordinate memory with camera and kid. It's a challenging proposition as my brain just doesn't seem to want to do higher functioning these days.

In related news....what was I saying?

Back home

2009-10-29T22:47:00.000-07:00

Zoe was discharged yesterday from the hospital--everything seemed to be back to normal with her.

This morning I arose at 5am to find an itchy red rash covering much of Zoe's torso.

Could this be it? The appearance of the dreaded GVHD?
(cue the villain entry theme)
Dum, da-dum, dum!

A visit to the doc today for labs and a skin scan. Manley (today's attending) thought that the skin rash did look similar to GVHD, but wanted to rule out a delayed reaction to the antibiotics administered during the G Tube placement surgery. He had us dose her with Benadryl with the intent of seeing if any improvement might happen. Marked improvement would mean the rash was likely not GVHD based.

So, there was some improvement over the next few hours, but some rash still remains. We check in with Manley tomorrow to find out whether her tacrolimus (immunosuppresent/anti-GVHD drug) levels are therapeutic and to discuss the state of her rash.

It's quite possible that, if it is GVHD, it was triggered by the inflammation response she had to the surgery. The fever she had was the first one she's gotten since her transplant. It very well may have gotten her new T cells hot and bothered and on a tear to attack. This is how GVHD can get going--and why they want us to keep Zoe from getting sick for at least the first year after transplant; her new T cells, when activated by inflammation or viruses, can get confused as to what is the enemy and decide that Zoe (or her skin, or liver, or GI tract, or any and all of it) must be attacked.

It must not be a common reaction to G Tube placement surgery, or else I'm sure they would have mentioned it.

If they determine it to be GVHD then Zoe would be put on a course of prednisone for treatment.

Ugh. Steroids. "Roid" rage. Weeee! Here we go again

--or, maybe not. We may not know for certain for a few more days.....but I tend to like to prepare myself.

By the way...

2009-10-28T19:37:00.000-07:00

Finally posted a recent video of Zoe--check the YouTube link for a shot of Cute!

G Tube Placement

2009-10-27T22:13:00.000-07:00

Zoe went in on Monday for her G Tube placement surgery. The procedure took only 15 minutes, but recovery is still ongoing.

We were only supposed to stay one night in the hospital with her, but due to her stronger-than-usual reaction she's there for a second night tonight.

She spiked a fever and had bad enough pain that oxycodone and Tylenol did not cut it for her; only morphine seemed to do anything. Her gut function appeared to just halt for a good 24 hours after the procedure in reaction, which made getting her back to her formula feeds impossible for longer than expected.

This all said, she's doing well.

Imaging showed that her G Tube was placed correctly and that the inside of her stomach looks pink and healthy. Tonight is my night to stay home--and Jeff just called to tell me that our energetic and happy girl has made a reappearance. Guts finally seem to be moving, meaning they can go forward with getting her back on her feed schedule.

Had a little feeling that it wasn't going to be quite as smooth as they said it would be. Zoe's just living up to her namesake and continuing to keep us in the here and now.

Blessed tyke.

General Update

2009-10-21T15:48:00.000-07:00

Wow. Lookie at that--no posts for two months! As I've mentioned before, no posts undoubtedly mean good news maintains in ZENland. Of course there's plenty to talk about, but the longer I go without posting about it, the more I have to write, and then the less I'm motivated to blog it all out. Enough of you have sent me interweb pant kicks, so I guess I have to put down those bon-bons, roll off the couch, and get to work...

A month ago we took Zoe in for her 6 month check-up post-shunt placement for a CT scan to see how her brain was doing. Every CT image since her transplant has shown an alarmingly large right ventricle--even up to 3 months after the shunt was placed.

This time the CT revealed a very slimmed-down right ventricle to the relief of all. It got me wondering about the brain and developmental movement as it relates to Zoe's experience.

As you know, Zoe is quite delayed in her gross motor skills ability. At 21 months of age she is not yet crawling when most of her peers are accomplished runners, climbers and tumblers. When placed on the floor, for the longest time she would only lie mostly still, on her back, with her movements limited to kicking.

In the month leading up to the CT scan it seemed that all of the sudden Zoe was motivated to do more than just lie and kick. She started to get up on hands and knees for moments at a time, push her self backwards with her hands while on her stomach, and scoot herself forward with her legs while on her back.

With the news of her ventricle shrinking down to almost normal size I wondered if it correlated with Zoe's increased motor activity. The study of developmental movement in babies has shown connection between certain physical movements and the stimulation of brain development in infants. Did Zoe's increased activity help to heal her brain, or did the shrinking of her ventricle help promote her gross motor skills? Hard to say, but it's an interesting question.

As such, she's still just on the cusp of crawling. It's clear that she's muscularly not as strong as her compatriots, as she can only sustain weight on her arms in the crawl position for a few seconds at a time. She keeps trying though. Maybe by her second birthday she'll finally be a crawler. Then I suppose we really will have to baby-proof our house for the first time. Such a novelty!

Plans are in place to remove Zoe's NG tube and place a G tube directly through the abdominal wall into the stomach. We had a satisfying experience when Zoe had to go in for a torso X-Ray in the pre-G tube placement exam. The doc who came in to read her films looked a bit confused and asked, "What is your daughter's condition??" Jeff replied, "Osteopetrosis." The doctor said with further confusion, "But her bones look fine!" A light came on and he continued, "Ah! But she had a bone marrow transplant!"

Guess we know for certain now that it worked :-)

So the G tube gets placed this next Monday, October 26th. It will be a minimally invasive surgery that will require Zoe to stay only one night in the hospital. She'll overnight in the oncology unit where she resided during her BMT -- a precaution taken due to the fact that she is still immunocompromised. Apparently Seattle Children's is currently crawling with kids with H1N1 already, so I'm happy for the immunity-friendly accomodations. Also, it will feel like old home week getting to see all of our favorite nurses again (and yes, even some of the overly-perky ones).

Despite her delays, Zoe is doing her best to be a properly mischievous almost two year old. She's teething currently, so finds it endlessly entertaining to try and use my fingers as teething tools. When she manages to catch me unawares and bite me HARD, my yelp of pain only makes her chortle delightedly and try even harder to lead my fingers to her mouth. I've told her many times that she should bite her own fingers; she's game, but not quite as entertained by that prospect.

She's a dedicated escape artist; we've started to call her Zodini. She takes her right arm out of every outfit we put her in and shoots it out of the neck hole so that she sports the currently fashionable one shouldered look. Any pants that we put on her promptly come off (even the ones we put on her under the onsies eventually get taken off), and those that she can't take off soon have both of her legs in one pant leg, leaving her flopping her conjoined limbs like a little mermaid.

She would have us play her special Zoe music over the stereo all day long if we could stand it. I am chagrined to say that she's as opinionated about music as I am--anything that is not "her" music is marked by wails of protest. Introducing new songs to her is a process --but I'm determined because I have just about had it up to here with "Baby Beluga".

Zoe's been on a jaunt for the last couple months where she's decided that 3- 3:30 AM is a perfect time for getting up. Believe me, we've tried letting her stay in her crib, but an hour of her kicking the headboard and bellowing loudly just on the other side of the wall from us convinces us eventually that there's no going back to sleep. So, we've gotten into a routine of taking turns doing the early shift (the one who has to work the coming day gets to sleep in). On my mornings I take her to the living room, put her in her little room with plenty of toys, turn on her music, and doze fitfully on the couch. I think that's pretty much what Jeff does on his mornings too, but I've never gotten up to check.

Zoe's starting to show signs that she's cycling out of that monstrous phase--she's been waking up a little later: 5am two days ago, 6am yesterday, 4am today (my day to get up--dang!).

As for Jeff and I, I have to say that we are doing and feeling so much better. It's been quite a radical shift, actually. We've been exercising vigorously on an average of 5 days a week for the last 4 months. In addition to that we took a yoga/meditation class about a month ago that taught us a practice we are doing twice a day now. The class was just what we needed to help lift us out of our rut of feeling victimized by what we've been through with Zoe, and has given us a practice which helps us to center ourselves on a regular basis. I highly recommend the class to those of you drawn to this sort of thing--it's offered around the world in different cities, is not religion-based --and will inject some serious juice in your life.

We are getting ready to hunker down for the upcoming cold and flu season. My cousin Caren just called me today to tell me that 15% of her son's school is out with what looks like H1N1. It's not a virus that is looking as dangerous as they feared, but it's seriously unfriendly to young children, especially immunocompromised ones. This may be a long, lonely winter of Netflix and internet surfing for our little family as we try to avoid any of us getting sick.

Wish us luck.

Anniversary of sorts

2009-08-26T21:56:00.000-07:00

Today I realized that it's been exactly one year since Zoe's diagnosis. A year ago, these very minutes I was writing my first blog post, reeling from the news we had just been handed hours before.

What a crazy, crazy year it's been since then.

And~

Zoe is here, she's alive, and she's thriving.

I had no sense of this outcome, no mother's intuition about how it would turn out. In the months after her diagnosis, but before her transplant, I would look at her sometimes and know that she was going to make it. But just as often I would look at her, heart aching, seeing the funeral with all her favorite music playing. Those visions just knocked me flat.

It was quite a head space to occupy for a good while there--we've only really became convinced of her sticking around with us for awhile yet in the last few months.

Jeff and I have grown and changed and stretched and broken and grown some more, but mostly we still feel like we're treading water (however, with less anxiety and thrashing about). I wish I could say that I've grown into a more spiritually advanced person, a more patient person, or a more gracious person for the experience, but mostly I just feel more tired and more easily irritated. I hope this won't always be the case though. I think that as Zoe progresses (and sleeps longer!) I may finally get back to my old, less irritated self.

Zoe continues to be the powerhouse of vitality and regeneration that she is. She had her Hickman line taken out on the 11th as scheduled, and it's been pretty smooth sailing since then. She's had a couple pokes for blood draws and only fussed a bit.

She seems so close to crawling finally--she's rolling from front to back, back to front, scooting on her back, reaching beyond her immediate circle of comfortable arm's reach. She finally seems motivated to explore beyond her immediate vicinity. As such, she's finally graduated from being able to lie on the couch without supervision, to having to be placed on the floor so that she won't roll off; a milestone most babies achieve by the 4th or 5th month. So, she's close to 20 months, but all good things..., right?

She's been strong enough for all of this physical work for a couple months now, but she didn't seem interested in moving beyond the comfort of lying on her back all day. I had started to describe her as "not gross motor skills delayed, but motivationally delayed". Motivation is finally kicking in in spades.

Yesterday we took her in for her check up with Dr. Carpenter at the SCCA. All was pleasure at her progress. There had been a concern arising last week as her lab reports had shown that one of her liver enzyme levels had shot up to quite high levels (not good). Only two things can make a post transplant's liver enzymes shoot up: adverse drug effects, or GVHD.

Her pediatrician had us hold one of her drugs for the week to see if this week's lab reports improved. They did, significantly (yay!)--but Carpenter said it could have been a coincidence, "hard to say." He didn't want to start any taper of her steroids or immunosuppression drugs even though she's been doing so well. His reasoning is that she had an unrelated donor's peripheral blood stem cell transplant--and the risk of GVHD is very significant with such.

Best not to rush to rock the boat.

The plan is to wait until Zoe stabilizes from the placement of her G-tube. G-tube? Newest development.

Currently Zoe has an NG-tube (nasal gastric) that goes through her nose, down her esophagus into her stomach for the purpose of feeding her and administering meds. A G-tube is simply a gastric tube that is surgically inserted through her abdominal wall directly to her stomach. A cap keeps it closed while not in use and the whole thing hides under her clothing. Without the NG tube there is no longer a risk to her pulling it out and aspirating the formula, there is no need for tape to be perpetually on her face, she no longer has a visible statement to all who look at her that something is "wrong" with her, and she will no longer have a tube dangling down her throat. This last part is possibly the best perk: without a tube in her throat she may feel more inclined to actually start swallowing food again.

It means surgery though, and another appliance sticking out of her, when we had just gotten rid of the central line. It does bring a greater risk of infection as well. However, the risk is not as strong as the Hickman risk was, and we did pretty well with that. I talked to a couple people who said that the G-Tube is great--one of them a mother of a small child who had one put in after a long time with an NG-tube. She said it was a God-send.

So, once the G-tube is placed and Zoe seems to be stable and business as usual after that, THEN Carpenter said he will look at tapering Zoe's meds.

Something out there is determined that I will learn patience. Eventually.

Zoe on the Main Line

2009-07-25T22:05:00.000-07:00

Big exciting news in the ZEN universe is that Zoe's hickman line will be removed on August 11th.

I've been itching for it to come out; its usefulness has been waning with the growing gaps between blood draws. And when I think on it too much, I cringe with the thought that these dangling tubes Zoe constantly play with tap into a vein that goes directly to her heart.

I thought it was Dr. Carpenter's call to determine its removal date, but Zoe's pediatrician said that it was within her jurisdiction as well, and agreed that its removal would be a good thing since its benefits no longer outweighed the risks.

Zoe could have gotten it removed sooner than August 11th, but lines are only removed on Tuesdays--and only two per Tuesday at that. So, she's got the first available slot, which puts her on August 11th.

When her Hickman goes away, so will the daily line flushes, the twice daily blood thinner injections, the weekly dressing changes, and the line protection protocol prior to bath time (the inconvenience of which has unfortunately rendered Zoe rarely bathed).

Hot diggity dog.
---------------------------------------

Zoe has started to try and imitate words said to her. It's a particularly interesting process since she can't watch us and see how we are forming the words with our mouths.

Her ability to imitate relies on her understanding how sounds we make relate to all of the various babbling sounds she makes on a regular basis. A plastic "pitcher" handed to her went through the rapid name evolution of "dada" to "dida" to "geetcha". It all happened through a quick succession of my stating the word and Zoe attempting to say it more correctly with each effort.

I remember as a child not hearing certain words in detail. I would call a signal a "sigunal" and not be able to understand why my mother kept telling me I was saying it wrong; I couldn't hear the difference between the two pronunciations. I think about this and imagine that Zoe has more of a limit to what she can do verbally since she can't see my mouth form the words. Mama is "Nana"--and no amount of prolonging the "m" gets her to understand that there is a difference between the two words.

Humorously enough, "nana" is also how she says "nose".

Yep, that's me--Nana with the nana. My nose follows me everywhere...
-------------------------------------------------

This evening was quite the unique experience for us: we went to Seattle Children's Hospital as visitors for the very first time.

Yesterday afternoon I got a call from an old high school friend, Ryan, that I had reconnected with at the 10 year reunion. Ryan lives with his wife and 8 week old baby girl in Kalispell, Montana. The call yesterday was hurried and bewildered; Ryan's wife and daughter were to be flown ASAP to Seattle Children's as they had just ascertained that Ava, his daughter, had a rather serious heart defect that needed to be fixed right away.

Ryan called me within hours of the diagnosis and I was transported to that place, last August 26th, when our lives as parents got pushed over the precipice--just as theirs were in free fall at that very moment.

His voice, his shock and the sound of a psyche in overdrive were all too familiar. They were coming here--and by god, did we know how to support them!

All of the love and care that you all have shown us have been waiting for opportunities to be paid forward, and walking up to the Giraffe entrance with dinner for our friends felt like a sacred honor that you all have passed on through us.

Thank you.

P.Y.T.

2009-07-11T12:00:00.000-07:00

According to Zoe's oncologist at SCCA, "she's ahead of the curve" as far as how well she's doing at this point past her transplant. She still seems to have no sign of chronic GVHD showing up--especially remarkable given that she had a peripheral blood stem cell transplant (which result in the highest rate of GVHD occurrence).

Our appointment--a monthly check-in--was three Tuesdays ago (see, my timeliness is definitely slipping) at SCCA.

It was so good to see the jaw drop of the PA Natalie when she walked in and saw Zoe for the first time since halfway through Zoe's hospital stay. Last Natalie had seen was Zoe with a distended abdomen, a refractory platelet problem, acute skin GVHD, and a swollen head. To say that Zoe was an altogether new baby in Natalie's eyes is an understatement; watching Natalie's face full of wonder as she gave a boisterous Zoe her exam was potent medicine for Jeff and I.

I guess we can really believe that we have a Wonder Baby.

As well as she is doing, Dr. Carpenter (the oncologist) declared that he didn't want to shake anything up by changing her meds. He did say that she's well enough to stretch her next check-in out to two months; he said he'd see about the appropriateness of backing her off the steroids then.

According to Dr. Carpenter, the steroids are at a minimal dose as it is. A good indicator of this is the fact that Zoe does not really have that steroidal puffiness that people get when they are on a larger dose. Certainly she is chunky, probably chunkier than she would be if she weren't on the steroids, but she doesn't have the jowls and the abdomen of people on higher doses.

That was good to hear.

We've been slowly introducing Zoe's gut to the concept of "bolus feeds" which is where we give her a "large" dose (70ml) of her formula and give her a break from her continuous feeds for an hour and a half afterward. The idea is to eventually get her able to take 120mls of formula four times throughout the day. At the point that this is possible, Zoe will not be needing to be on a continuous feed drip 24hrs a day.

Definitely a worthy thing to work towards, but until we get there this new regimen has us fiddling with either meds or a formula bolus every two hours from 8 am to 8pm (with another med push at midnight).

I'm used to it by now. On my days with Zoe I don't get out much since going anywhere means prepping for at least an hour (and whoops, gotta get another med push in--and, there goes her diaper!).

Jeff and I are nursing machines.

And hopefully soon we will be well toned (let alone honed) nursing machines. Jeff ordered a workout DVD series, advertised on late night infomercials, known as P90X. We have been doing push ups and chin ups and crazy-difficult exercises for the last two weeks that have made us extremely sore.

We figure, we're already exhausted--why not be exhausted for physical reasons? I don't think I've ever exercised at this intensity in my lifetime--but talk to me in a few more weeks; two weeks ain't long enough to brag about...

Here are a couple pics of Zoe working with her PT Sarah--who is helping Zoe become comfortable with putting weight on her feet.

Check YouTube in the next couple days to see some videos of Zoe working with her PT and life skills educator...

1.5 Birthday!

2009-07-06T22:28:00.000-07:00

Short post--I have been working on a much longer one for what's been waaaaay too long. But my eyelids are slipping down on my efforts once again, so I wanted to get a quick one in to say:

Zoe's 18 months today!

What a love and joy she is --and such a little ham. Tonight I went into her room 20 minutes after I had put her down for bed to do some fiddling with her feed pump. She was lying quietly with eyes closed, blankie held next to her face, and breathing slowly and steadily.

Without warning she whipped the blankie down, opened her eyes and yelled, "Baaaaaahhh!" with a big grin on her face. It surprised me so much that I started to laugh hysterically (I know, I know--you're never supposed to laugh at behavior you don't want to encourage...). She was quite pleased with herself--and I was immensely impressed with this obvious comedic genius we are raising.

I uploaded a couple more videos to the YouTube channel--one of Zoe playing a piano duet with me, and the other of Zoe showing Jeff the proper way to follow an exercise video.

These two pics are of Zoe in her walker--we're trying to help her understand that standing is "fun"! She's not really buying it...

Day ????

2009-06-13T22:55:00.000-07:00

My "weekly" posts are being stretched further apart with each posting now. I believe I have hit the two week mark for the first time in awhile. I've gone long enough that I've lost count of the days post transplant.

It's definitely a sign of good things: with less trauma and excitement I feel that I have less to report.

Zoe just thrives, that's the gist of it all.

She's massively delayed for her age, but for HER, for Zoe--she is amazing. She's a master at rolling over from front to back. She's an accomplished sitter, and she's slowly learning that supporting her body weight using her feet and legs while being held upright can be a fun thing. Zoe jabbers and laughs all day long--interspersed with healthy amounts of whining of course--filling our house with happy baby sounds.

We are blessed.

That isn't to say that we are not still suffering from too much sleep deprivation, nursing fatigue, doctor and therapy appointment overload, and accompanying mood challenges, because we are.

But, I'll take it all because it's all part of what has allowed us much more time with this amazing little girl.

This last photo is a picture of Zoe during one of her sessions with the speech therapist whose other specialty is helping kids learn how to eat. Although the photo makes it look promising with the scooper of food in her mouth, Zoe still refuses to have much to do with food.

Check YouTube for eating therapy vids...

Day 135: The Dark Side of the Coin

2009-06-05T23:50:00.000-07:00

Zoe is doing great--just some issue with a diaper rash from hell and some accompanying diarrhea (aren't you glad you asked?). I placed her on her tummy today with her bottom bare to give it an airing--eventually I glanced over to find her on her back. That's the second time in a little over a week she's rolled over on her own. At seventeen months old it's not very precocious for her age, but for Zoe it's perfect--and we couldn't be more thrilled.
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I've been dragging my feet in writing about this next bit, but here it is:

Remember the UK family I once mentioned who has a girl, Alishba, just a few months older than Zoe with osteopetrosis as well? I don't know if I mentioned that within days of her diagnosis almost a year ago her mother found out that she was pregnant again.

That child, another girl, was diagnosed in utero with OP as well. Simrah was born March 10th this year, and started her transplant proceedings a month and a half later.

Simrah contracted an influenza virus a few weeks ago during her transplant process, was on a ventilator for several days, and so tragically and unfortunately was not able to handle the stress of it all and passed away on May 25th.

Her family, understandably, is in shock and grieving. I think of her mother and can barely hold the comprehension of her pain in losing a child so soon after giving birth it.

There it is. Right there. The other side of this crazy coin toss that we have experienced.

I am in communication with Alishba and Simrah's twin aunts, and to them I sent this email that better expresses what I can't seem to access now while I write of this:

Oh Loves,

I'm just sick for you. There is no getting around the pain you all have to go through.

I don't know if this brings any comfort at all, but when we were on the other side of the transplant process, being told that Zoe had a 50% chance of survival, we had a couple talks with a Zen Buddhist monk who counseled us.

He told us that this whole experience was about Life and Death. That there was no softening that fact.

Life.
Death.

He said that Zoe was still so close to her state of Being before Life, that if she had to go, it would be a familiar and comforting place for her. It would not be a scary Unknown--for her.

Does not really make it easier for us--for you, the family that is left grieving Simrah's retreat back to the Beyond she so recently emerged from. It's not fair, it is horribly painful and beyond ghastly and tragic to think of the path leading up to her departure.

It is a shock to see how horribly wrong this process can go. It does reduce me to tears whenever I think of your little angel--and it's nothing compared to what you all are going through. I know it brings home how easily I could have lost Zoe myself.

I am so grateful that Alishba and Zoe are both doing so well--what a healing salve of a girl your niece must be to you all! Just as I smother my girl in hugs and kisses --smother that little one of yours with the same!

I wish for you two love and comfort and healing for the pain of your loss of little Simrah. I don't know that I believe in a God, but I do believe in the primordial soup of Love that is the base of all Being--and know that Simrah is cradled tight in that Love that was, and is, her Birthright.

As it is for all of us.

xxoo Kellie

If any of you feel as though you would like to send your words or thoughts of comfort to their family through Shaheena, one of Simrah's aunts, you can contact her through her YouTube channel--and see videos of Simrah and Alishba as well.

Day +127: Dot Matrix

2009-05-28T21:09:00.000-07:00

This week saw us going to the SCCA for the first time in 3 weeks. We met with Dr. Carpenter who wanted to check-in with Zoe's prognosis before he recommended tweaking her steroid and anti-GVHD medicine dosing.

He and the transplant team were very pleased with Zoe's progress, and are still not able to say whether Zoe is technically dealing with mild "chronic" GVHD or simply taking her time in managing her mild "acute" GVHD. Regardless of semantics, he declared that he wanted her to hold steady at current medication levels for another month and then see her again. If all continues to go well during that time he will then consider tapering her meds.

Meanwhile, we are to keep a look out for new signs of GVHD. Apparently making it to Day +100 clear of the stuff doesn't mean that she's off the hook.

Well, whatever.

I'm so beyond sweating all that. She's doing well, and I'm choosing to believe that she will keep heading towards health.
----------------------------------------------------

I've been learning Braille and am actually enjoying it!

I've discovered another wonder of Zoe's name just in the learning of this new modality. It takes a bit of explaining to have you fully enjoy the discovery, but here it goes:

Braille creates numbers and letters by using a 6 dot formation such as that found on a basic six dot domino. The dots in a cell are numbered:

1 4
2 5
3 6

The letters of the Braille alphabet are grouped in three rows:

a b c d e f g h i j
k l m n o p q r s t
u v x y z

w

"W" sits by itself as there is no such letter in the French alphabet (the mother tongue of Louis Braille).

In the first row each Braille letter has a specific formation that only utilizes one of dots 1,2,4 & 5 --the top four dots.

Every letter in the second row is essentially the same as the letter directly above it in the first row, except that a dot in position 3 has been added.

Every letter in the third row is essentially the same as the letter directly above it in the second row, except that a dot in position 6 has been added.

So, for example the letter "a" is represented by a dot in position 1. "k", the letter that is situated below it in the second row is made by dot 1, plus dot 3. "u" is made up of dots 1 and 3 plus 6.

Going on, the letter "b" is made up of dots 1 and 2. "l" below it is made up of dots 1 and 2 plus 3; "v" below that is made up of dots 1,2,3 plus 6.

And going further again: "c" = 1,4 ; "m" = 1,4,3; "x"= 1,4,3,6

Everyone following me?

(Usually the numbered dots describing each formation are written in numerical order, but I wrote them in the fashion I did so that you can see the progression of how each letter builds on the one above it.)

So, if you look at the formation of letters of the alphabet the way I wrote them above, and mentally draw columns that group the letters vertically, you will see which letters are derivatives of the ones above it. Get to the letter "z" and you will see that it is derived from the letter "o" above it which was, in turn, derived from the letter "e" above that!

Pretty crazy, huh?

(For those who want to know how to write "zoe" in Braille: "z"=1,3,5,6; "o"=1,3,5; "e"=1,5)

Here's a quick reference sheet that I received as part of my learning materials from the Hadley School for the Blind. It doesn't show up quite as well in the blog version of the scan, but it gives you a little more of an idea of how it all works:

Day +121

2009-05-22T22:17:00.000-07:00

Four months and a day past transplant. I just re-watched the video we made on transplant day--and it took me right back to that gaping sensation of the Enormous Unknown.

Makes me want to cry just seeing and feeling that again.

She done good. We all done good. Every single one of us --that means you!

The Zoe-meister keeps thriving and is slowly gaining the ground other kids her age have mastered by now. She sits up well and is close to being able to roll over. She is being very resistant to eating food by mouth though. She went through a period where she was willing to try anything offered to her; now she complains when anything is put in her mouth.

Many things are two steps forward and one step back with her. I keep myself focused on the long term and know, absolutely, that one day she will eat normally, as well as walk and talk and do all the things any other kid does (with her own adaptations, of course). I look at other kids her age and younger quizzically, because they are simply different species to me.

In my world Zoe is the norm.

She is starting to teeth again, after almost a year since her last two came in. The advancement of her osteopetrosis and the resulting overgrowth of bone had locked her teeth into her jaws, not allowing them to progress in the normal fashion. Her new osteoclasts have obviously been diligently at work and have remodeled her bone enough to allow teeth to begin peeking through. Three new beauties are flashing pearly through her pink gums--along with the accompanying crankiness. Poor girl will probably be teething triple time now!

Also, her hair is finally starting to grow back. We call her our little Chia Baby.

A couple new vids added to the YouTube link. It's all about getting the girl to laugh...

Day +113: Million Dollar Baby

2009-05-14T22:58:00.000-07:00

$1,014,771.28

That's what the Explanation of Benefits that came in the mail yesterday said Seattle Children's billed our insurance for Zoe's transplant and related services.

Regence negotiated the fees down to $906,199.58--and paid the whopping sum of $248,057.29.

$658,142.29.

That's what the EOB said we owe. (Hello, heart--would you mind beating again?)

But.

We are given to understand that we will be okay--we have been assured up and down that Medicaid will pay for anything not covered by the insurance, that this will be the case through the end of the year.

Jeff called financial services at Children's just to be reassured of this after that gem came in the mail. Gary from the financial department (a very sweet man with the most stunning comb-over I have ever witnessed. Seriously. It stunned me when I saw it.) calmly reaffirmed that everything will be taken care of.

Again, I find myself being grateful for not being an "overly" successful couple in our business in the last couple years. Not that we've been floundering by any means, but I'm thankful that we didn't make one dollar more than the cut-off for aid.

The margin between making too much to qualify for financial aid--and making enough to actually afford over $650K of medical bills is astronomically wide. Anecdotally I know of a local family who found themselves within this margin--and it is crushing them. AND, they still have a chronically sick kid to have to manage as well.

What is wrong with our country? This medical monetary hemoraging has got to be fixed. Maybe pluck a billion or two from TARP...
---------------------------------------------------

This week we saw Zoe's new pediatrician for the first time. Blythe Thompson works at the Hemo-Oncology department at Seattle Children's and is very familiar with post transplant children. We liked her.

Mainly things have been continuing to hold steady with Miss Z--with little tweakings here and there: her NG tube had to be pulled out an inch and a half as an X-ray showed it was going beyond her stomach and into the intestine (not good); her topical steroid for stomach GVHD got increased back to its original, larger dose (here comes Crazy Baby!) as her stools were not improving.

We're moving forward with PT and eating help for Zoe. I've posted a new vid on YouTube of Zoe relishing a cracker--the likes of which we haven't seen since. It was a brief burst of interest in food, and now she's back to resisting attempts to put edibles into her mouth.

Honestly, it seems easier to just fill up her formula bag at this point and set the feed pump going than wrestling food into her mouth.

I mean really, what mother wouldn't agree with me on that?

Day +105

2009-05-06T22:41:00.000-07:00

Day +100 passed last rainy Saturday, with little fanfare. It's so good to be this far on the other side, to realize that it's been a solid 6 or 8 weeks since I started to allow myself to future-trip with my girl again.

I've been thinking about what it will be like to raise a blind child--a girl in particular. The awesomeness of that journey freezes me up a bit when I think of it; so many things to figure out.

How do you teach a child with no verbal memory of sight what a bird is? How it flies? What colors are? The enormity of the ocean? Stars and space?

Sex education??!

That one stymies me. Pictures are pretty helpful for that topic. Without that option...how...exactly?

I just signed up for an Intro to Braille correspondence course offered for free by the Hadley School for family members of blind people. I figured I had better get started learning it now. Zoe will outstrip me regardless, but I don't want to be completely unprepared. My understanding is that sighted people actually learn Braille by visually reading it. Apparently it's a bit late for us to develop the needed tactile sensitivity to read it by touch.

We watched an amazing documentary on YouTube about a 14 year old blind boy who taught himself how to navigate through his world by using echo location. It's a truly inspiring piece done in five parts that you can watch by clicking on these links:

Part 1
Part 2
Part 3
Part 4
Part 5

I particularly was inspired by the mother's attitude, which was obviously a huge support and benefit for him.

I'm taking it in, this learning about being a mother to a special needs little girl. Some of it comes naturally, but I'm seeing that most of it is plain old going to be constantly-in-my-face opportunities for "personal growth experiences."

Already started really. And how.

Day +97

2009-04-28T22:40:00.000-07:00

We're closing in on that 100 day bench mark. SCCA and I are at odds on what day it actually is--I say Day +97, they say Day +96. I like my number better.

Today we had the big "exit conference" with the current attending, the BMT team nurse and fellow to go over Zoe's history to date and to outline a plan for the future.

So far they consider her to be doing remarkably well, especially given her particular disorder and particularly considering that she had a peripheral blood stem cell transplant. As I had mentioned before, osteopetrosis has a high rate of graft failure, and pbsc transplants have a high rate of GVHD problems. So far the graft is holding strong, and her GVHD problems seem to be limited and responsive to treatment.

Last week they added a new steroid to the mix to treat her mild stomach GVHD (bringing her med pushes to five times a day--woo hoo). A few days into the new routine I noticed that Zoe had a new edge to her personality. Her happy highs were very high--and her lows were maniacal-Jack-Nicholson-at-the-door-with-a-bloody-hatchet types of rage-fests.

I started to wonder who had swapped my sweet daughter with a crazy pixie.

Then I realized, ah yes--'roid rage again. And though the team declared up and down that the new steroid didn't generally have the side effect of personality changes, they backed off her dose a bit. Within a few days she was back to the girl we knew.

We are getting Zoe set up with the Boyer Clinic to help her move forward with gross and fine motor skills. Last week their vision educator, a lovely woman named Mary Ellen, came to assess her. She works with kids of all vision levels and said that unless the child doesn't have eyes, she never assumes that they have absolutely no vision. She told us that she knows two blind adults who use "echolocation" to move around without a cane. She said that one is so proficient at it that he rides his bike around the city. Yee-oww!

Yesterday the PT, Sarah, that we will be working with came to assess Zoe. The tests Sarah did with her described Zoe as having the gross motor skills of a 4 month old, and the fine motor skills of a 9 month old.

Zoe's got the smarts though. The main challenge is to figure out how to motivate her to WANT to reach the developmental milestones. She's spent so much time on her back that she prefers to be in that position. When I sit her up she'll humor me for a bit--and then throw herself backward, or scoot herself down--whatever will get her back on her back. She'll then grin in a self satisfied way and kick her feet enthusiastically.
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I was contacted by a lactation consultant that I corresponded with prior to the transplant. She wanted to know what I had done regarding the whole breast feeding issue with Zoe, and I felt a bit chagrined and defensive to have to respond back to her that I didn't, in fact, breast feed Zoe as I had intended to do during her transplant. I had good reasons (as detailed in earlier posts on the subject) backing me up--and listed them off to her.

Her response surprised me: she said that I probably now had more knowledge on the subject than many people and that, if I were to write an article for the Journal of Human Lactation on my experience and findings, it would most certainly get published. Not a scientific article by any means, but one that outlines the exploration process I went through and the answers that influenced my outcome on the matter.

The idea is certainly ego stroking. But, I would actually have to get my brain working to do it.

Am mulling over it, enjoying the prospect, and...procrastinating.

Day +89

2009-04-20T22:02:00.000-07:00

The endoscopy last week showed a beautiful GI tract--no visible signs of gut GVHD. Although the procedure wasn't a major one, it took about 5 hours from our front door and back again.

Last week was long and pushed the limits for us in terms of endurance. Clinic visit Monday at SCCA, ophthalmology appointment Tuesday at Children's (never simple), endoscopy Thursday at Children's, clinic visit Friday at SCCA, blood draw Saturday at SCCA. Not to mention fitting in work as well--and all those other things like pushing meds four times a day, IV hydration, keeping her feed pump going, and attempting not to go crazy.

So, I'm complaining. Yeah. So?

I've come to terms with the fact that I will never be featured as one of those people that bear up under pressure angelically or with envious grace. Those people can kiss my ass.

Anyway.

Although Zoe's gut looked visibly clear, the biopsies they took during her endoscopy showed some *mild* stomach GVHD that they termed as "sub-clinical". Accordingly they started her on a topical steroid that will treat it. The idea is that if the inflammation is kept in check then the graft and her body will eventually learn to live in harmony. It's a fine-tuned balance between keeping the GVHD at bay and not compromising her health too much (steroids=not so great).

Also, I can't remeber if I mentioned this, but during her shunt placement surgery they also took a skin biopsy to check for skin GVHD. The biopsy came back positive, but it wasn't clear if it was from the hyper-acute GVHD she had during the transplant, or if it reflected a current flare. As she is still on a prednisone taper schedule that suppresses GVHD (and her immune system), it's not possible to know how much GVHD is currently an issue.

Tommorrow is another SCCA clinic appointment (extra-long due to an oral care visit), Thursday we meet with a vision educator from the Boyer Clinic (early intervention program) and have a hearing test and neurosurgery appointment, and Friday is another SCCA clinic day.

Wednesday we are supposed to go to a "long term care" class, but we told them flat-out that we aren't going and to "not bother rescheduling us". The majority of their classes are aimed at adults going through cancer care regimens. We just don't have the time or patience to sit through something like that and cobble together information that might work for us.

So anyway, this week is a "light" week.

Next week is our extra long "exit" consultation with the SCCA people. Then, at Day +100, we will be set loose. For out-of-town patients Day +100 is when they are cleared to go back to where they came from and have their own doctor take over long term care.

We have a line on a pediatrician that works with the SCCA folks and operates out of Seattle Children's. I think we are going to be persuing that option.

A lot of Jeff's family was in from out-of-town this last weekend as Jeff's brother Martin had an opening for a major installation at the Museum of Glass in Tacoma. One of Jeff's cousins who came, Robin, is a professional organizer who spent three hours at our house today helping me make a plan for carving some space and clarity out of the chaos that is in our house.

It's definitely a virgo thing to be so nurtured by such an event. We virgos seem to externalize our inner need for order and serenity and often find ourselves organizing under the sink when our minds need to de-clutter.

I've got bags of stuff by the front door that I'm booting out of here. My definition of junk has widened while identification of "important things" has narrowed.

Thank you, Robin.

And Zoe.

Day +84: New YouTube videos

2009-04-15T22:54:00.000-07:00

It's been a while, but I've finally got more videos for you--a total Zoe onslaught! Just click on that YouTube link at the right and you'll be more than sated...

Tomorrow (Thursday) Zoe goes in for an endoscopy to see if she has any gut GVHD. I guess they figured that one procedure this last week under anesthesia wasn't quite enough.

Her head looks sliced and diced with her latest incision and hardware addition (giving her a big bump that I'm not entirely happy with). She's undergone a fair amount of pain, but is now starting to sound like her usual chipper self.

Her head is looking a bit strange now that it is being properly drained. Well, as it was pretty strange looking prior to now, I guess I should say it has taken on a new quality of strangeness: it's looking deflated.

She has dips and sink holes where fluid had previously been bulging out. The picture below shows a little of this --look for the bone ridge sticking up towards the top of her head from this perspective.

It's not all that dramatic looking in the picture, but her new head gave me the heebie jeebies for the first couple days. Now it's just incorporated into my sense of how she looks.

SCCA is starting to get things in place for our "exit conference"--Day +100 is when they set us loose and has us taking Zoe to her pediatrician for ongoing check-in's. We need to do a little investigating to see if we might need to find someone new who has experience with post -transplant children (not quite a common specialty), or if we will stick with her own pediatrician who has been great at looking into things she isn't familiar with.

We are getting Zoe set up with an early intervention program that will help her move forward with gross and fine motor skills. In my mind we can't get them started with her fast enough as she is so often bored from not being able to do much to entertain herself. She has the active mind of a 15 month old, but motor abilities of a 3 month old. She can't see things around her, nor move towards things that she might feel.

An ophthalmology appointment she had yesterday confirmed that she is blind as a naked mole rat. Vision that I observed she had in the hospital, that of being able to register light changes, was likely done-in by this last experience of hydrocephaly (fluid build-up in the brain). It wasn't surprising to hear that she is blind, but there was a part of me that was hoping for a miraculous vision recovery. The doc did say that well, given her young age, there is a slim chance that some recovery might happen, but I really got the sense that he didn't think it was likely.

Last year at Easter I was asked what one word represented what I wanted to welcome in for the year that followed. With my young 3 month old baby just beginning to manifest vision problems and other inexplicable issues, I stated "Miracles".

We have gotten some of those. That a stem cell transplant even works is a pretty damn big miracle in my book.

This year my Easter wish is for "Transcendence."

On so many levels...

Day + 80: Home!

2009-04-11T21:24:00.000-07:00

This morning the Neurosurgery Team came by and checked on Zoe. Everything looked good and they said she was clear to go as far as they where concerned. So, after adjusting her pain medication and watching her vital signs for any complications, we got the OK from the SCCA Team and left around 6 PM.

Zoe is fast asleep in her bed as I type. We are soon to follow.

Details to come.

Thanks for your love, support, and prayers

Zendada

Day +79: Good Li'l Shunting

2009-04-10T22:07:00.000-07:00

Zoe is back in our room at the SCCA unit in Seattle Children's after her surgery this late afternoon.

The neurosurgeon, Browd, said that everything went as well as could be expected. Three things singular to her situation presented themselves:

The tube running from her brain down to her abdominal cavity could not be placed in the usual route medial to her breast tissue as her central line was in the way. He placed it to the outside of her right breast tissue instead (and assures me that it won't cause a problem once she starts to develop).
Due to her enlarged liver, he had to make a wider than usual incision by her naval in order to guide the abdominal portion of the tube into place.
He said that closing her incisions up was not the experience they usually have, as her skin was of a poor quality "like an 80 year-old's". (hmm, have heard that description before--but back in November it was from her other surgeon in reference to her dura-mater! What is it with Zoe and her 80 year-old status?)

But, nothing really worrisome--the real concern now according to him is whether any infection will present itself in the next few days and weeks. Keep those antiseptic thoughts wafting her way!

Zoe did have to be rather doped up tonight to keep her from endlessly scratching from the itchiness caused by the morphine they gave her. She half pulled out her NG tube from all her face rubbing when I had my back turned briefly, so now she has on arm cuffs that keep them from bending (and reaching her face).

As far as the skin being of poor quality, they tell us it could be due to skin GVHD. SCCA had Browd do a skin biopsy for them to analyze as a part of her Day +80 work up that they do for all transplant patients. From that we should know more about what's going on with her skin on Monday.

Good Friday! Let's have an Even Better Saturday!

Day +78

2009-04-09T23:01:00.000-07:00

Just the facts, Ma'am:

Zoe goes in for surgery tomorrow to have a shunt put into her head to enable her brain to drain the cerebral spinal fluid it's obviously not able to deal with on its own. We check into the hospital at 11:30am, her surgery is at 3:30pm.

They don't know why her brain is doing this, but likely it's due to fall-out from the surgery and possibly the effects of the chemo from her transplant pre-conditioning.

The surgery will take approximately an hour. The neurosurgeon will install the tube that will go from the ventricles in her brain, stretching down to her abdominal cavity where the extra fluid will be diverted and absorbed. There will be a programmable valve installed that will be controlled via a special magnet.

Zoe will likely have the shunt for the rest of her life.

A different neurosurgeon (Browd) than the one (Avellino) who worked on her last November will be Zoe's doctor. Avellino has taken a position at the UW Medical center and is no longer treating children. Cunningham assures us that Browd is very good at what he does.

Risk of infection for this procedure stands at 5% of all of the shunt installations they do due to the fact that hardware placement is involved. Anytime hardware is introduced into the body the risk of infection increases.

As Zoe is immunocompromised she will be checking into the SCCA unit prior to tomorrow's surgery and will be returned to the unit after the procedure.

The hospital stay for normal kids usually is a day past the surgery, but as Zoe is "special", we know this may not be the case for her.

This will be the fourth time we will be handing her over to anesthesiologists for a surgical procedure, and it hasn't gotten any easier. While we are necessarily becoming inured to this mind tilting medical saga, the underlying terror of potentially having our hearts ripped out is pretty much still a constant.

Zoe seems to enjoy marking her milestones in accordance to certain auspicious days: Her birthday fell on "Epiphany Day" in the Catholic religion that celebrates the arrival of the Magi to visit the baby Jesus. Her skull surgery date of November 6th was presided over by the patron saint Winnoc who had cured a blind man. Her transplant date was the day before the historical swearing in of our first African American President, and her shunt will be going in on Good Friday. If you follow that sort of thing. I find it all interesting, but don't give it much portentive weight.

Oof, tired--off to bed...

Day +76: Here We Go Again

2009-04-07T20:59:00.000-07:00

It was determined today that Zoe needs to have surgery, ASAP, to install a shunt in her skull.

Last Friday we took her in for a consult with Dr. Michael Cunningham in the Craniofacial clinic to have a check-in about her progressively weird head shape and talk about where we go from here.

Yes, he said that her bumpy head was due to surgical suture blow-out during her high fevers, but that he wasn't concerned at that point about needing to act quickly based on how well she was doing and by looking at the most recent CT results from 7 weeks ago.

Her right ventricle looked rather large, but it wasn't clear as to whether it was large due to internal pressure pushing it out (not good), or a lack of external pressure keeping her brain contained (not as urgent of an issue). Apparently brains will expand to fill the space provided, and as there was a large amount of space created by the surgical sutures releasing, it was conceivable that her right ventricle grew as a result of brain expansion into the large bulge on the right side of her skull.

If the ventricle had grown due to internally produced pressure from undrained cerebral spinal fluid, a shunt would be needed to release the pressure. However, if the ventricle was determined to be large from the lack of external pressure, then a shunt would be the wrong path to take as it would cause the brain to deflate from unneeded drainage.

If I confuse, it's only because I care (and still suffer from brain mush due to sleep deprivation).

The CT scan also showed that the area of damaged brain tissue in the right temporal side of the brain was still quite visible--it was a dark mass on the screen. While it looked alarming to me, it wasn't much of a concern to Cunningham. She was young and full of tissue "plasticity" that would compensate for the damaged area, he said. Her state of being, the fact that she was doing so well, was the largest indicator of the overall health of her brain. That, he said, was a more important indicator than what we saw in the scans on the computer screen.

The meeting was left with Cunningham saying that he would review the CT's with Dr's Hopper and Avellino and that they would all confer on the best next step for Zoe.

This morning we awoke to find Zoe's soft spot on her head visibly larger (haven't we been down this path before?). The groove of trusting more and more in Zoe's smoother sailing from here on out got gouged out by the old familiar terror: What the hell was going on with her??!

I snapped some photos of her head,

sent them to Cunningham and then paged him. He got her in for a CT scan by 12:30, and by 2:30 we heard from him that her right ventricle was indeed larger than the last scan had shown, and that the neurosurgeon on call said that she would need a shunt.

I don't know many of the particulars about what this means (How long will she have to have a shunt? How serious is the surgery? What is projected recovery? How do things change with an immunocompromised patient?), but tomorrow we will likely meet with neurosurgery and learn more.

Stay tuned.

Day +70

2009-04-01T22:30:00.000-07:00

Wow, a week since the last post. I definitely have much less time to write these days.

We are gradually getting into a groove with all of Zoe's medical needs, but it is a constant and demanding schedule.

Twice in the last week we've awoken early to find Zoe in the middle of a chilly lake of formula due to the feeding tube disconnecting from her feed pump. The first time we were all really pissed off about it, the second time it was more of an annoyance (and Zoe, the one swimming in the mess, was remarkably sanguine about it all).

She is simply remarkable in all of this--so seemingly unscathed emotionally by her experience. She's just sweet and happy most of the time (except when she's not).

In contrast, her parents aren't quite there yet themselves.

We take Zoe to twice weekly clinic appointments at SCCA on Tuesdays and Thursdays for blood draws and check ups. Last Friday's appointment came after a terrible night's sleep, and I was in a foul, foul place about all of the work that stretched unceasingly ahead.

I admit, I may have been rude.

(Madame PA: This is what I know for certain-- when I am crabby about all this, telling me that 'at least I have it easier than a single parent in my position' is not going to make me snap out of my self pity. It will only make me bite your head off. The only proper response is to cluck and say, 'I'm sorry you're having a hard time; you will get through this.')

But, being back at home and having some normalcy again is definitely great--and the work load gets easier with familiarity. I figure that probably the amount of work we have with her is not more than a parent with two children, and people obviously survive that just fine.

Working (massaging) on a fuller schedule now that we're back at home has been good too--it's great to focus on other people's issues other than our own. And massage is such a reciprocal career in that it's usually a mutually healing experience.

On that note, if you're in the area and need a massage, feel free to contact us. Between Jeff and I, we are providers for the major insurance carriers of Aetna, Regence (Blue Shield), Premera, Uniform Medical, L&I, and soon United Healthcare. We have years of experience in both the relaxation and medical massage arenas.

In letting us support your physical health, it's another great way that you can support us.

Day +64: Fun with Home Care

2009-03-26T21:37:00.000-07:00

Monday was the momentous discharge day--and I was too darn busy to properly dignify it with a posting here. I am just going to have to get comfortable with always being two steps behind in this next year--because DANG, this home care regimen is pretty much a full time job!

But, I get ahead of myself.

I was the one who got to spend the last night at the hospital--fitting as I was there for the first night as well. The little stinker must have heard me say to Jeff, as he was leaving for the night, that it would no doubt be a much better night than the first sleepless one.

It was, but just barely.

Zoe decided that 1am was a perfect time for playing and jabbering. The lovely nurse offered to stroll her around the unit--and had her out for 2 hours before Z tired of socializing with the night nurses and showed signs of wanting to nod off again. Then she was up every hour from then, and I was reminded of the days when she was a newborn.

Monday was marked by a flurry of activity aimed towards getting us out of the hospital at a decent time. And, even though everything went very smoothly, we didn't get out of there until 2:30pm.

The home care regimen has been a shock to the system in terms of how much work it involves. Zoe needs medications administered at four different times a day, the earliest dose coming at 8am, the latest being given at midnight. Makes for figuring out an adequate sleeping schedule rather challenging.

We hook her up to IV fluids every night (nerve wracking in that we are accessing her central line and therefore increasing her risk of infection) and have to maintain and administer feeds through a pump that pushes formula through her NG tube at a set rate. Feeds have to be turned off 30 prior to administering meds and then turned on again 30 minutes after meds (admittedly we don't wait 30 minutes after the midnight feeding).

Also, we have to flush her central line once a day and change the dressing on the central line once a week (which is a big improvement from when people had to change the dressing daily). In a couple weeks we will have to start back up with the twice daily blood thinner injections to make certain she doesn't clot around her central line.

Twice a week Zoe needs to go to clinic appointments at the SCCA for a few hours worth of blood draws, check ups, and consultations with the attending doctor, the nutritionist and the PA.

All we know is that between work, home chores, baby and baby's medical schedule we are seriously running most of the day--and not sleeping enough at night. They tell us this will get better with time as her medical needs start to taper, but that it IS a seriously overwhelming experience for all parents who leave the hospital with their newly transplanted kid.

Here are some pics of all of her paraphernalia:

From top to bottom: gloves and alcohol wipes, medications, central line flushing supplies, dressing change supplies, tubing, IV pump

In the refrigerator: IV bags, meds

Supplies for the blood thinner injections that we will have to start doing again twice a day in a couple weeks (once her diaper rash heals)

Supplies in bedroom

Zoe in bed hooked up to her IV pump and feed pump (both in the black and red bag at the upper right hand corner of the picture)

It's quite a lot--but it still beats living at the hospital where all the stuff was done for us (but the worrying). Well, off to bed, perchance to sleep (but no guarantees)...

Day +62: HOME!

2009-03-24T22:30:00.001-07:00

Just a quick note to say we are indeed home, we are surviving it so far--and we have a truck-load (not my original description) of stuff to do for Zoe's home care.

Will post a more thorough documenting soon--

but I have got. to. get. some. SLEEP!

Midnight and morning medication come altogether too fast...

Oh, and Zoe is fabulous.

Day +59: Ten weeks!

2009-03-21T21:40:00.000-07:00

Wow, I stop posting every night, and the next thing I know it's been days since I last updated.

The MRI of Zoe's gall bladder revealed no change: still full of sludge, the walls still thickened. A consult with the GI docs indicated no procedures needed; the general consensus is that the resumption of feedings will eventually help her gall bladder clear itself out.

Word is Zoe gets to be discharged this coming Monday. This time I'm thinking there is a strong likelihood that it will actually happen.

Jeff and I were trained today on how to operate her feed pump that pushes formula through her NG tube. Tomorrow we will get trained in how to hook her up to her IV nutrition as she is not fully off of it yet.

The amount of stuff she is being sent home with, from a mountain of medications to be administered three times a day, to all of the medical paraphernalia required for her support--wow.

I'm just hoping that I won't start to secretly want to be back at the hospital when we really get to experience being 100% in charge of her daily maintenance. I hear it's very overwhelming at first, but that every week gets easier as medications and clinic visits gradually begin to taper.

I ran into our favorite nurse Kelly last night before tucking into bed at the hospital. Turns out she had to race her daughter (the one who had gone through BMT and is now around Day +180) to the hospital due to sudden and violent symptoms that indicated what turned out to be an infection. She's on antibiotics and doing okay now, but it was a grim reminder that immunosuppression is serious and dangerous--and that being discharged from the original hospital stay does not mean that the transplant process is over.

The coming year will be about vigilance and stamina for us. We've finished the steep hill climb portion of the marathon, now comes the long haul.

I'm feeling good about it though. Real good.

Day +55

2009-03-17T21:20:00.000-07:00

We still are inching forward toward discharge. Tomorrow's ultrasound will tell us more, but there is a question as to what is going on with Zoe's gall bladder. Her liver enzymes keep spiking, so tomorrow they will see if any improvement has been made.

In the grand scheme of things it's not really a huge thing, but it is part of what's keeping her from being discharged.

The other issue holding her back is getting her GI tract to handle appropriate feed levels for her size. She's still on a fair amount of IV nutrition as her gut doesn't seem to like having too much food in it. It could all be related to the gall bladder issue--again, tomorrow's ultrasound will (hopefully) tell us more.

Aside from these two sticking points, Zoe is just a little spunky chunk of fun--and mischievousness.

I am having to learn the lesson every parent eventually learns: Do Not Laugh at Behavior You Don't Want Repeated!

Oy.

She started pulling off her diaper tab (you know, the one that keeps it shut), and I thought she was so funny and brilliant for her dexterity and skill--and perhaps reacted in a not entirely appropriate way (or at least not in a way that had future vision).

Consequently she now has this horribly magnificent way of unlatching her diaper directly before she poops and has a kicking frenzy.

I'm loving the endless laundry service now, but when we go home this new talent of hers will be a problem.
-------------------------------------------

Jeff got his turn at being the patient today: he had to have a root canal this morning. Poor guy! I just have to tell myself that if it had to happen during this process, it's a very good thing it didn't need to happen a month ago. Always something to be grateful for!

And speaking of gratitude, here's an email I just got today from Diana, the organizer of Sunday night's fundraiser, sent out after the event:

Greetings everyone -

I wanted very badly to express much more tonight than I was able and thought that maybe I could finish off in an after party email.

First, I am so very grateful to Deborah Music and Joe Whinney from Theo Chocolate for all of the amazing effort that they put into tonight's benefit. They provided the venue, the tours and the chocolate samples at no cost so that more of our money raised could directly benefit Jeff, Kellie and Zoe.

Kelly and Manny Loya (representing Altered State of Wine) donated wine for the occasion.

Tony Stevens and Trevor Larkin donated their time and talent so that we could listen to live music.

Kal Austin provided the food and drink.

Henry, Skiah and Manny made posters and helped to organize and clean.

Countless other people brought wine, printed pictures, collected the donations and spread the word and without this concerted effort the benefit would not have been such a great success.

Many of the people attending tonight have never met Jeff and Kellie before. This is a perfect reminder that we need not know everyone to be a community of people helping one another. I am quite overwhelmed at the generosity displayed here tonight.

Between us all we raised over $2500...

For those who attended, for those who did not and still donated and for those who have sent well wishes - I thank you all deeply.

- Diana.

And how!

Blessings have a way of persisting in this process. We are deeply grateful.

Day +53: Choco-Love

2009-03-15T21:18:00.000-07:00

I am blissfully buzzing on love and chocolate from tonight's fundraiser for Zoe at Theo Chocolate in Fremont, Seattle.

Our friend Diana, her son Skiah and a couple other friends of his organized an amazing party at our local chocolatier to raise money for us to help get us through this experience with Zoe. Many people showed up for the event, half of which we didn't even recognize.

Wow. It just blew us away. I kept bursting out bawling tonight.

The factory gave a couple tours during the event. We learned that chocolate contains phenylethylamine (which speeds up the flow of information between nerve cells), dopamine (the feel-good chemical) and norepinephrine (which stimulates the production of adrenaline and makes our heart race fast) — all the same chemicals responsible for that energized and euphoric feeling that new lovers experience.

All I know is that I'm warm all over from a love vibe that I don't think is entirely or even mostly chocolate-induced.

Gratitude. Grace. Community.

Zoe's got her village, and it is circled tight. Thank you, and namaste.

Day +51: Platelets!

2009-03-13T20:52:00.000-07:00

It's official: Zoe is manufacturing her own platelets!

There was a debate a couple days ago about whether to transfuse her the supply of matched platelets that was due to expire that night. I was all for it as I really couldn't stand to see bag go to waste (no, they wouldn't give it to anyone else for some reason), and as I figured that she could probably benefit from a bump.

The doctor explained that with a transfusion of blood product there is always a risk. As her count of 43 was not below the threshold they had set of 30, he felt that the risk outweighed the benefit. Besides, he said, her body had not been chewing up the platelets nearly as fast as it had been, so it might just be possible that she was on the verge of making them herself.

Wise doctor.

The very next day's lab results showed a boost of her platelets to 47. Today they were in the mid 50's. The girl is making them! As I said many posts ago, platelets are the last thing to "come on line" when the new cells engraft. We had heard that it can often longer, but 2 months is long enough for me!

We keep having hiccups with the whole transitioning of Zoe out of the hospital. She gets to a certain point in her hourly NG feed levels, and then she starts barfing. It's difficult to tell whether she had an allergy to the cow milk-based formula, or whether her GI is simply too sensitive. They switched her to goat's milk, but then she barfed shortly after they switched her from fresh goat milk to the powdered variety (for food safety concerns). So now she's back on the fresh goat milk, and we're waiting to see how that goes.

Also, her liver enzymes keep fluctuating. They upped her liver medicine, but there's not much else to do except keep trying to get more food in her gut. There's a whole lot of the "wait and see" approach to dealing with Zoe.

Again, outwardly she's acting like a healthy, boisterous kid who's getting sillier by the day. It's really good to see-- and Jeff and I are just so done with being at the hospital. She's getting more energetic; we are getting more and more exhausted.

In fact, yesterday I ran a red light because I was spacing out. No talking on the cell phone, just simply did not notice that the light was red. I drove into the intersection and almost became the inside of a car sandwich as two cars from each direction headed straight for me. Thankfully they were more alert than I: one swerved, the other braked, and no one laid on their horn. I think we were all too shocked.

Thank heaven for the competency of strangers!

Day +48

2009-03-10T22:20:00.000-07:00

Well, I think I'm going to let myself relax on the daily posting approach--I mean, how many different ways can I say, "Zoe continues to do fine, but not fine enough to go home yet"?

I will definitely update when there is more news to tell. But, if no post shows up for the day, just assume that it's probably more of the same!

Day +47

2009-03-09T23:01:00.000-07:00

A repeat of a liver ultrasound today showed that Zoe's gall bladder still has thickened walls and is full of sludge. But, her pain is considerably down (aside from a brief and intense bout of it just tonight), as are her liver enzymes.

They still aren't really certain what went on with her there, but they are keeping her on the antibiotics and upping her ursadiol doses (liver support medicine).

Other than that, we are spending a lot of time hanging out with a happy baby.

No firm word on when we'll go home. It feels like we're in a very slow moving limbo state, and it's hard not to get antsy.

Day +46

2009-03-08T23:11:00.000-07:00

Zoe seems to peak at 10pm--no, scratch that, with daylight savings, 11pm.

So, I sit here torn between wanting to squeal and giggle with my baby because it's just so lovely to see her this way--and trying to calm her down so that she'll sleep reasonably soon and let me go to bed already!

So, so grateful that this is the main struggle of my day today.

What a way we've come, eh, Baby Girl?

Day +45

2009-03-07T20:59:00.000-08:00

Another attending doctor has come into rotation--Bob Andrews. He is a very nice, gentle and grounded older gentleman who I liked immediately. He doesn't have the charisma of Manley, but as long as he instills confidence and calm in me, I'm satisfied.

Zoe seems to be back to her chipper and happy self, and she's having periods of time that she's so bursting with joy that she actually breaks out into happy laughter when she hears my voice.

Does a mama's heart good!

Her liver is still tender to touch and, as such, the doctor wants her to be on her new antibiotic for two weeks. It's still not quite clear what's causing the sludge in her ducts and her gallbladder to be inflamed, but they are calling it possible cholecystitis and treating it accordingly.

A friend of ours came to the hospital this morning and gave both Jeff and I an acupuncture treatment to help us with our exhausted, yet wire-y, states. Apparently Jeff had a very weak kidney pulse, and I had a very weak liver pulse. I can't remember the remedies for Jeff, but I'm supposed to eat red meat.

Apparently pork is not supposed to be the greatest for me.

But-- bacon!?

Day +44: Tip Toeing Back to "On Track"

2009-03-06T21:13:00.000-08:00

Aside from the fever that Zoe spiked early this morning, things seem to be heading back to the former state of smooth sailing. She was happy today and not in pain.

I'd write more, but I'm experiencing this frustrating jag of not sleeping well on the nights I go home. No matter that I bulk up on the sleep aides those nights, inevitably I wake up at 2 or 3AM and can't sleep well after that.

Maybe it's just too quiet at home!

Anyway, I'm tired; thus the short post. Not that you'd complain, right? ;-)

Day +43: Eyeing that Rollercoaster...

2009-03-05T21:47:00.000-08:00

This morning I woke up to the news that Zoe's liver enzymes were very high. It simply happened all of the sudden. Manley looked visibly concerned and, based on her recent history of extreme discomfort coupled with this new development, he opined that there was a 90% likelihood that the culprit was either infection or liver GVHD.

Hello, Worry! Was so glad you were gone for a fair bit...

Labs were drawn, meds were transferred back to IV form from the oral versions, morphine dose was raised a bit, and an ultrasound was scheduled.

I sat huddled in a corner generally catastrophizing and reeling from the reminder that Zoe, though she's looked hale and hearty for the last couple weeks, is indeed going through a major fracking process.

Blurg!

(you can really tell the shows I watch by the curse-word euphemisms I use...)

Our favorite nurse, Kelly (and no, she isn't our favorite because of her awesome name--and curses! today was her last day in our unit for two months!), talked me down from my terror tree.
She's a good one to do it as she went through a BMT with her own daughter not too long ago herself. Kelly said that even if it were an infection or GVHD that there would be treatment options--and that Zoe has demonstrated that she responds well to treatment.

She told us to get used to this rollercoaster ride, that it will be like this, will turn on a dime in an instant, that this is the nature of the beast we are riding.

So, we got the lab reports back showing decreasing liver enzyme numbers, and the ultrasound they took of Zoe showed sludge in her bile ducts, gall bladder irritation, and the possible start of a gall stone.

The 10% option had won out; her liver was likely irritated from hard work and lack of food moving through her gut for so long.

Manley came back in visibly relieved. He said that of the things that could be wrong with her liver, this was the best! Zoe was looking pretty good herself by then--not as uncomfortable and out of it as she had been for the last couple days. She even managed a grin for him.

They are switching her antibiotic to one that better deals with gut bacteria making its way up through the bile ducts (in case that's an issue). And, they are going to start all over again and gradually bring her up on the formula feeds through her NG tube. Irritation is best dealt with by getting her liver working on food digestion, but they want to ease her into it.

So, we are not going home on Monday, even though--so far--she's sidestepped a deeper pitfall.

Truth is, I really don't want to go home until it's clear that Zoe is stable. It's very comforting having the professionals always available to keep their eye on things.

Day +42: Bit of a Backtrack

2009-03-04T20:38:00.000-08:00

It started yesterday, and ramped up today: Zoe's agitated misery. The theory that she might be suffering from morphine withdrawal developed, so they started her back up again on a small dose. Additionally, they gave her two boluses to get her to calm down and ease her high-pitched squealing that indicated pain and discomfort.

Poor baby!

While Jeff was with her today during my work hours, he swore that nothing but James Brown's music kept her calm. When I came back tonight it was playing loudly. He explained that whenever he turned it off her squealing started up, only to calm down when he turned JB on again.

Right now she's finally settled down back into her morphinated bliss. They will taper her even more slowly now, possibly using methadone to ease her back down.

James Brown?? Girl, who were you in a past life?

I don't know karate, but I know ca-razy!

Day +41: Happy Birthday, ZENDada!

2009-03-03T22:18:00.000-08:00

Another, longer walk today with the girl. Fortunately her parents didn't wig out with neuroses as expected.

Little complications have been arising, such as more frequent emesis and traces of blood in her stool. So far it's watch and wait. Is it just the GI tract getting used to more things moving through it? Or, is it signs of gut GVHD starting to show?

Not worried yet, just wary.

I'm detaching myself from the expectation of Zoe really being discharged on Monday. As tonight's nurse told us, "Don't pack until they tell you that you're free to go." I guess she would know. The team is hyper vigilant with babies and doesn't want to discharge us only to have us immediately return due to complications.

I'm so fine with that!

Tonight we had a mini birthday party in the room for Jeff's birthday. Six adults and Zoe. Fortunately our nurse had no problem with people being in our room past visiting hours.

Bribing with cake never hurts.

Day +40

2009-03-02T22:52:00.000-08:00

In case any of you noticed, I misnumbered and skipped Day+39 in my counting. Maybe I'm just a little too anxious to push this healing phase right along.

Next in Zoe's progression of steps towards normalcy was the ending of her morphine drip, which allows her to be unhooked from the IV for up to 4 hours at a time. Then-- she got to go outside for the first time in 7 weeks!

I was off to give a few massages today by the time that momentous occasion took place, but Jeff got to wheel her outside in the play yard. He said that taking her past the double doors that mark the entrance of the SCCA unit felt strange and unprotected. It will probably take a few practice runs before it starts to feel liberating!

No doubt we will be revisiting that experience new parents have when they take their fragile newborn baby out into the world for the first time: hyper-protective vigilance and a strong discomfort that everyone just may try to touch and/or cough on your baby!

But Zoe--and Jeff--survived the walk, and tomorrow she will have another excursion.
-------------------------------------------------------------

A dear one has just let us know that she is organizing a benefit on Zoe's--and our--behalf at the amazing Theo's Chocolates (details in the post prior to this one). The gesture touches us deeply.

Again, we are humbled and rocked by the support of our community and look forward to when we can give back in kind.

Thank you all, and namaste.

March 15 Party & Benefit for Zoe!

2009-03-02T15:00:00.000-08:00

This from JK&Z community member Diana Garde - Wow!

(especially note "FEEL FREE TO SPREAD THE WORD")

We would like to invite you to a special night dedicated to Zoe Elan Newton.

Here is the link to the e-vite (NOTE!!! Do not RSVP directly at the link, click on "invite more" to make sure you RSVP as yourself otherwise you will be RSVPing as Jon Howe!).

Come and enjoy appetizers, wine, music and chocolate treats.

Theo Chocolate will also have two factory tours during the event.

All proceeds are to benefit Zoe and her parents, Jeff and Kellie, while Zoe heals.

Tickets are $20 for adults and $12 for children to be paid at the door (check or cash).

We ask that you please RSVP by March 8th.

If you cannot make it, please consider a donation.

We hope to see you there, in the spirit of community, love and healing.

Feel free to spread the word!

Thank you Diana! What a wonderful idea to bring to life.

Day +39

2009-03-01T19:55:00.000-08:00

Today we had our favorite nurse again--she was happy to watch lively Zoe for a few hours so that we could drive up to Edmonds and see my sister-in-law and her family. She is fighting for her life--and the cancer is showing itself to be a dogged adversary.

The life and death battle never really goes away does it? It's just that I've been so good for so long at living the illusion of immortality of my life and of my loved ones.

Death always ultimately wins the match, but it's Life that gets to roll around with Love.

Rumi, bless him, wrote in his poem "The Price of Kissing"--

"I would love to kiss you.
The price of kissing is your life.

Now my loving is running toward my life shouting,
What a bargain, let's buy it."

Day +38

2009-02-28T21:46:00.000-08:00

Today Dr. Manley said that it seemed reasonable to aim for Zoe being discharged a week from this coming Monday. Wow!

She is almost completely off all her IV medications. In a few days she will be weaned off of her morphine drip and will be able to be unhooked from her IV for several hours at a time. Provided that she continues to do well, they will actually have us leave the hospital with her for 4 hours at a time the few days leading up to her discharge so that we can experience little stints of having her back in the real world.

I'm liking the idea of practice time.

I have a prayer/good vibes request for my oldest brother Dave's wife Colleen. She's been battling breast cancer for almost three years, almost had it licked, and just this week got some very bad news about its spread. Zoe is doing so much better, so please use the powerful force of all the prayers and thoughts you've been sending her way, and beam them to my sister-in-law Colleen Marie Newton. She needs all the help she can get.

I know from experience that you all can work miracles.

Thank you.

Day +37

2009-02-27T19:58:00.000-08:00

We had our first official meeting with the transition nurse today. The magnitude of how much work Zoe will be for the next few months is finally hitting me.

Zoe will be discharged with an immune system that is not even as strong as a newborn's. It will be up to us to monitor her for fevers and other signs of infection, give her medications, take her to multiple clinic visits a week, keep her out of germs' way, and maintain a sense of normalcy for her and for us (ideally).

We are definitely up for the challenge--and it's just something new to wrap my brain around. I've been so focused on pacing myself through this current, acute, hospital internment that this glimpse of the road ahead seems a little daunting.

It's a cross-country run when I've only been training for the short, mad dash.

A volunteer came today to play with Zoe while Jeff was off at work. I got to take a walk to the nearby nature preserve under a warm sun and brilliant blue sky. No eagles today--but I did see seven turtles sunning themselves on floating logs, their little heads all pointing the same way.

North. Home.

Coincidence?

Day +36

2009-02-26T22:37:00.000-08:00

Out of isolation---and into transition!

Today's rounding of the team included a woman introduced to us as the "transition nurse" that will help us with the process of transitioning from the hospital to home. The team says that if Zoe continues to do as well as she is doing, we will be home in the next couple weeks.

So great!

Dr. Manley just beamed this morning when he saw Zoe. He is so thrilled with her progress and the robust vitality that is exuding from her. He said that it's patients like Zoe that make him really love his job.

As I wrote a friend the other day, I am daring to hope--and that terrifies me!

Day +35

2009-02-25T19:47:00.000-08:00

I was wrong. The nasal wash results didn't come back this morning; they're still pending. So, still on isolation.

Zoe's day was packed with entertainment. This morning she had a lovely visit from a folk singer named Betty Bender who sang and played her guitar, three volunteers came to play with her at different times, she was visited by the music therapist David, and two different occupational therapists came to work with her--one for swallowing with bottle feeds, the other for tummy time. She ate it all up.

I think this girl might go through a little center-of-attention withdrawal once she checks out of here. Well, no doubt we all will for that matter!

I got to escape with a girlfriend for lunch at a nearby sushi place, and do a little birthday shopping for my main man. His birthday is next Tuesday, March 3rd--and will be his second in a row spent at Seattle Children's hospital. Last year's birthday marked the first of many diagnostic procedures (her first MRI) and the beginning of six months of endless searching in our quest to figure out what was wrong with Zoe.

I'm holding out the vision that Jeff's NEXT birthday (and a milestone year for that matter) will be a rocking celebration on many levels and held nowhere close to Seattle Children's!

Day +34

2009-02-24T22:22:00.000-08:00

Zoe's great--and they've put us back on isolation as her nose is runny.

Not a huge deal. Isolation means that we can't hang out in the public places on the unit, we can't put leftovers in the fridge, and that everyone who comes into our room has to gown and glove up and wear a mask. They reinstated isolation until the results of today's nasal wash comes back tomorrow morning. They don't want to risk her having a bug that other compromised kids could catch.

At least we know they're fastidious.

We'll see tomorrow, but Jeff and I are guessing the runny nose is in reaction to the formula they started her on yesterday through her NG tube. Just 8 ml an hour, but it's enough to get her gut used to food again. As we've never really given her cow milk based food, we're thinking it might be a reaction to the dairy.

I am really starting to think that Zoe is reaching a level of vitality she didn't even have prior to this current hospital stay. It's as though the new bone marrow is infusing her with energy she had previously lacked. I can't wait to see what she's like when her numbers are fully back to normal!

I've had to shake my head at myself today. Today's nurse was new to us: a young gal too eager to please and altogether too quick to apologize for any little thing that didn't merit an apology. It just irritated me. The more she apologized, the more irritated and curt I became--which in turn caused her to apologize more.

Poor girl. While it's great working with kids, I'm sure it's the over-stretched parents the staff here could probably do without sometimes.

Hey, I try, but some days...

Day +33

2009-02-23T21:29:00.000-08:00

Just more of the same good news. Feels nice to be a bit boring!

They have started to gradually taper her off the prednisone, decrease her morphine dose everyday, and have begun to pump a little formula into her stomach to get Zoe's digestion back on line.

A friend asked me via email today "Now what? Will she now begin to grow and dissolve bones? Will she grow relatively normally? Are there more procedures coming up? What are the upcoming questions to watch for?"

All very good questions that I don't really have answers for.

That's the problem with having a very rare disorder: there aren't many road maps to follow.

Certainly there are documented examples of children on the other side of osteopetrosis, and when we are sufficiently out of the current mire of Zoe's stem cell transplant and survival (still not a given, but oh-so-much more hopeful), we will definitely research more about what to expect next.

I remember hastily glancing through an osteopetrosis website months ago, not wanting to stay on long enough to read horror stories, but did explore it enough to see that there were no osteopetrosis specialists listed in Seattle.

The transplant team has mentioned many times the last osteopetrosis patient to come through their unit, and has indicated they would be open to asking his parents if they would be willing to talk to us when we are ready. Their boy is 4 years post transplant and, from bits of information dropped, he's an active boy, was transplanted in time to avoid vision loss, and is still dealing with chronic skin GVHD 4 years later. If that contact could be made it would likely give us an idea of practitioners who could best help us.

As far as what we know we can expect in the near future, Zoe will still need to avoid people with colds and flu, and public gathering spaces for a year after her transplant. If we can't avoid taking her with us to some place public, the directive is to go at non-peak times.

For months after she is discharged from Seattle Children's, she will have twice or more weekly clinic appointments for medicine and blood product infusions. I don't know how long those visits will stretch out--I'm sure it's up to how well she does post transplant.

With her head looking as deformed as it is, Zoe will likely need another cranial surgery in another couple years. Hopefully her bones and dura-mater will be significantly healthier by then and less like an 80 year-old's, as the neurosurgeon described.

Hopefully her bones will remodel, hopefully she will begin to grow normally, get the normal strength of a child her age, and experience all the biological things that a child with osteoclasts normally experiences.

But, we don't really know. Whoever said that life is a grand mystery wasn't joking.

Day +32

2009-02-22T21:35:00.000-08:00

Dr. Manley showed up and was all smiles and admiration for how well Zoe is doing compared to the last time he saw her. Tomorrow they will start to wean her off the prednisone and see whether the GVH rash for which it was prescribed will stay away.

Today our favorite nurse shooed Jeff and I away for a couple hours outside the hospital. For the first time in six weeks (well, much longer than that if we include the weeks leading up to admission)--a date! We drove to a cafe where Jeff's nephew has a photo art show hung (fabulous work, Isaac!). Friends who live a couple blocks away came and ate with us--it was so great to experience some carefree normalcy. And, Zoe was lovely and charming for the nurse while we were gone.

Zoe continues to get more and more active, expressive and opinionated. I'm amazed at how fast her strength is returning--I'm thinking she might just learn how to sit up on her own by the time we leave here. Small accomplishment for a 13.5 month old, but a HUGE leap in ability for this little girl!

Manley said that next on the agenda for Zoe is the process of transitioning her out of here. It will take awhile, but it's the first time the words have been said. Yay!

Of course, it ain't over 'til it's over, but I'll take it.

Day +31

2009-02-21T20:38:00.000-08:00

Minor stuff to tell, really.

Zoe is still on methylprednisone for the skin GVH--and it just ratchets her mood all over the place. I think the steroid spikes are wearing on her; she is often inconsolably whiny (totally understandable) and we are doing our best to distract her.

Today was the last day of the current attending doctor's rotation. Tomorrow we see Manley again and will have him for the next two weeks. We certainly have our preferred doctors as far as personalities go, but we really feel that the right attending doctors have been present at the perfect times in terms of their adroitness at handling each challenge Zoe has presented.

And, it will be fun to have Manley back.

Thank you all for your enthusiasm at our attaining engraftment. What a most excellent cheering squad you all make! My ears are still delightedly ringing from the collective shout of joy.

WOOT!

Day +30: OFFICIALLY ENGRAFTED!!!

2009-02-20T23:07:00.001-08:00

Well, actually it is official as of Day +29, but they didn't know for certain until this morning.

Engrafted! Ta-dah! What a lovely thing to be able to say.

And, her chimerism report came back--all donor cells in Zoe! More great news!

And--even more, fabulous news--we are no longer in "isolation." So, we now have refrigerator privileges, can hang out in common spaces in the unit, and nurses no longer have to gown and mask up when they come into the room.

It's a tremendous burden off everyone's back. And after six weeks. Phew! Long time.

Zoe had a nasal-gastric tube inserted today under sedation. As her platelets have been holding steady around the 50+ mark, they decided it was a good time to place it. The NG tube allows more medication to be taken orally without the need for Zoe to try to swallow it all.

One of the medications they want to start giving Zoe orally is the antiviral medication acyclovir as there is currently a nation-wide shortage that has finally resulted in no IV version of the product to be had. The only option now is the oral variety.

Talking to a PA who has been working on this unit since 1992, she told us that she has never seen this sort of thing happen before. The shortage means that there are children just now starting their chemo regimen who will not be able to have acylovir at all at the point when their mucositis gets bad enough to not be able to take meds orally. It's a critical drug that helps to fight infection while immune systems are offline. I feel bad for those kids--and am so grateful that Zoe got through the most dangerous part of her process while the drug could still be had.

No one seems to know why there is a shortage. I would really hate to hear it has anything to do with profits or politics.

But, back to the good news! Engraftment! Such a pleasant, altogether different song to sing than the ominous one ripping through my head last Sunday...

Day +29: Almost There

2009-02-19T22:06:00.000-08:00

Today the neutrophil count was over 1200 at 36 hours post the final dose (half dose really) of growth factor. At rounds this morning the doc said that if her numbers continue to trend upward in tomorrow's lab reports, then they will consider today as officially engrafted!

Come on morning's numbers!

Last night was a repeat of the night before--many soundings of the oxigen monitor's alarm as Zoe constantly dipped into the 80's in oxygen saturation percentage. They're not quite certain what to make of that. We'll see how tonight goes.

Day +28

2009-02-18T22:18:00.000-08:00

Neutrophil count up past 900 today, one last dose of the growth factor, and we'll see what her numbers do after tomorrow. We are still awaiting the results of the chimerism report that will tell us whose cells are dominant in Zoe: the donor's (good), or Zoe's (not good).

Last night was a bit of a rough one. Zoe's total oxygenation saturation levels continually dropped into the 80's while she was sleeping, even with pure oxygen being blown directly into her face. The alarm monitor kept going off, nurses and the PA constantly came in to check on her, and her lungs sounded somewhat ragged.

As the same thing happened today while she napped, they whisked her in for a chest CT scan to see if there was any infection to be blamed. Nothing; clear. And tonight her lungs sound fine, so far.

We'll see how the rest of the night goes. The little tyke gets a kick out of keeping everyone on their toes.

Her steroidal perkiness continued today. It's great having an alert and chipper baby again--and this alert baby is demanding to be entertained every minute that she is awake. When she gets bored--which is usually three minutes after we leave her bedside--she screams until one of us comes back and talks to her. Then it's instant sunny skies and delighted babbling.

Of course, I know she is effectively training us (and we her) with this activity, but we are total pushovers right now (as we should be). All hail Princess Zoe!

Helpful with Zoe entertainment today was another visit from David the music therapist. Check the YouTube link if you'd like to see a snippet of that--we are turning into quite the musical family.

Day +27

2009-02-17T21:57:00.000-08:00

Neutrophil count was over 700 today! The PA tried to tell us that Zoe was engrafted, but the attending corrected her and said the numbers were really a reflection of "cheating."

The growth factor is really what has boosted the count; the real test will be whether the numbers hold after they take her off of the growth factor. It's expected to see some sort of a drop, according to the doc, but just how far the drop goes is the question. Today was the last dose for now, then they'll see what the numbers do.

Yee haw.

But! It's been good to relax a bit again in the last couple days. Zoe's personality has taken an interesting jag--she's been a little precocious spit-fire. She jibber jabbers and screams just for the hell of it--and then cries bloody murder if someone touches her against her will.

Much of this new side of her is due to the steroids that they put her on this morning. With the increase of the neutrophil count has been a flare of an angry red, very itchy rash they are attributing to GVH. Expected, expected they assure us, but they want to stop it before it progresses: hence the steroids.

Heard of "'Roid rage"? Well, we are seeing a bit of that in Zoe. It mostly makes us laugh when she gets inordinately pissed off because she's just so dang cute. I'm sure she doesn't appreciate us chuckling at her tizzies, but it really can't be helped.

Later this afternoon I took a basketball from the play yard, walked to a waterfront pocket park in the nearby neighborhood, and shot baskets in the setting sun while listening to luscious music on my little ipod shuffle. The UW rowing team made beautiful silhouettes skimming across the water, ducks wandered at the shore, and for 20 minutes I was in blissful Perfection.

What was I worried about...?

Day +26: And Up Again

2009-02-16T11:35:00.000-08:00

I figured I had better update for today sooner rather than later, given my last post.

Just one dose of the growth factor boosted her neutrophil count in this morning's labs to 524. Her WBC's were 1.2. The doc said that such a dramatic reaction to the growth factor could only happen with someone on the verge of engrafting.

*long sigh of relief*

They will cut the growth factor dose in half today--as two side effects I neglected to mention are bone pain and spleen growth--and see if her numbers hold.

Heavens. What a ride.

Day +25: Ugh.

2009-02-15T19:42:00.000-08:00

I wish I knew how to start this post; I sit here and stare at the screen and will myself to type.

The doctor expressed concern this morning at the trend she's seeing in Zoe's lab reports. Her neutrophil count has been trending downward for several days. Each day it was lower the message was always, "Don't worry, this is part of what happens." But, when today's count logged 150, down from what had been 473 last week, and her WBC's were still staying below 1.0 at today's count of .8, the doc said they needed to look at what was going on.

It's taken several sessions of asking questions today to get this basic outline of what's possibly at issue, so here's the best I can do at outlining the salient points we heard today:

Osteopetrotic babies, due to the reduced bone marrow space, take longer to engraft, so it's still possible that what we are seeing in the numbers fluxuation is just an engraftment that's taking its own sweet time.

Zoe is on two medications, acyclovir--an antiviral-- and meropenem--a broad antibiotic, that in a very small percentage of patients (we're talking <.1%) have a side effect of neutropenia, that is, the reduction or stunting of neutrophil production. They will take her off of acyclovir for a week and switch her from meropenem to another antibiotic to see if her neutrophil count climbs back up.

The doctor will also be putting Zoe on a growth factor drug that stimulates the production of neutrophils. They had held off on this approach prior to now as one of the side effects of the growth factor drug is its role in delaying the production of platelets even further. As the numbers had been going in Zoe's favor, they hadn't seen the growth factor as necessary. Now that her numbers are apparently trending downward, the benefits outweigh the risks.

Osteopetrotic babies undergoing transplant have an elevated rate of graft rejection. That is the specter I have been wrestling with all day since word of her lab numbers came through this morning. If her body is rejecting the graft, there is really nothing to be done about it. If that is what is happening, the only course of action is to start the process all over again. The idea of it just floors me. But, the doctor tells me not to go there yet. (Can't help it when I'm this tired and scared.)

There are hopeful signs which point to the donor cells taking hold: the fact that her body keeps chewing up the platelets (the donor cells are doing this) and the stabilization of her calcium levels (a possible sign that the needed osteoclasts are present). Also, the fact that her weight has jumped up a couple pounds in just the last week and a half could possibly have caused a dilution of her numbers in relation to the overall fluid volume she's carrying.

Really though, no one knows. We won't know for possibly up to two weeks whether she's rejecting her graft, and the prospect of that just makes me want to collapse into a heap. I thought I was doing a good job of holding it together--and, I will do a good job of that again-- but this is frankly kicking me in the ass right now.

Jeff called me about thirty minutes ago with the "good news" that the latest batch of matched donor platelets kicked her up to 60. I was pleased, until I wrote that damned paragraph outlining hopeful signs that included her body not getting boosts from the platelets. So, I'm sitting here at home at 10pm without a doctor to ask whether this miraculous bump is actually a bad sign that her donor cells are petering out.

See how my mind goes? Somebody just shoot me.

Day +24

2009-02-14T22:08:00.000-08:00

Good day, Rough night!

A malfunction in the morphine pump led to Zoe not getting her steady dose of morphine. Things got rough at around 4 am and again at 6:30 am. She was given boluses of morphine at of those times and that calmed her immediately. The malfunction was fixed and the rest of the morning was playing catch up with her pain levels. Things smoothed out and the rest of the day she was interactive, cheerful and pain free.

We are still doing the platelet body fluid dance. No bump from last nights transfusion. Her belly is still soo big. A good dose of lasix helped her reduce fluids, but as I left they were finishing a platelet transfusion to be followed by blood later in the evening.

We keep on dancing.

P.S. Happy Valentines to ya'll

Kellie and I got out to take a walk together in today's sunshine. It has been quit a while since we both got out together. We saw a pair of eagles do their air ballet and talked about our girl. A good time!!!

Day +23

2009-02-13T19:48:00.000-08:00

Jeff here,

I just sent Kellie home to get some much needed rest tonight. I will try to fill her shoes.

Overall today was a good day in a post BMT day 23 kind of way. It is amazing how you get use to things and how quickly they become "normal".

We are still concerned about her fluid levels. Zoe's belly is getting bigger and it becomes a balancing game between fluids in and fluids out and what her different body systems are doing.

They are watching her very closely. Actually that's what they do all the time.

I am watching Zoe play with some toys that are hanging from a strap velcroed between the bars of the crib. The tambourine jingles as she hits it with her hands and she laughs in response to the new sounds.

She is very talkative and playful at this moment.

Keys words: at this moment. That's all I have. Who knows what kind of ride we will have tonight.

Plateletes stayed above 10 this morning. That meant we could wait till this afternoon to get the matched donor plateletes and not have to go with the pooled platelets. They can cause more reactions than we want.

Just got the word from our nurse that her platelet count was at 5 after this afternoon's matched transfusion.

#$%@#!!!!

It shows us that just because it's matched doesn't mean we will get the bump we want. Onward we go. I hope we can get more of the donor's platelets we had yesterday. I am thankful that there are even people willing to give, and I want to suck the ones that work dry!!

This is definitely testing my resolve. I was hoping that the low platelet phase had passed, but...

Here's to a "normal" night.

Day +22

2009-02-12T21:21:00.000-08:00

Today we had a conference with the current attending doctor, Dr. Bleakley, one of the PA's and a fellow.It was a good check-in time for us to ask questions and hear their current thinking and approach with Zoe.

She is doing well, she's on her way to engraftment, and the platelet situation has them moderately concerned. They have some courses of action they plan to explore in terms of lining up additional matched donors (even going out of state to find more) and giving her IVIG to encourage her immune system not to attack the platelets so determinedly.

If that doesn't work they will then explore using steroids and a drug regimen to suppress her B cells that are responsible for attacking the platelets. It would have the effect of further compromising her immune system, but it could help her hold onto platelets.

Bleakley told us that we would be in the hospital with her for at least 4 more weeks easily. We've been here almost 5 weeks already. Platelet production is the last thing to kick in after a transplant, and with Zoe's body taking its time to engraft, who knows when the platelets will come online.

An interesting thing to hear Bleakley say today was that, given all the challenges with the platelet situation, it's probably for the best that Zoe's donor opted to give stem cells instead of marrow. Stem cells do engraft more quickly, therefore bringing in platelets more quickly. With engraftment taking this long for stem cells, marrow would have taken even longer, and platelets longer than that.

As some one had posted back when I was frustrated with the donor for not willing to give marrow: who are we to say that stem cells aren't what Zoe most needs?

Indeed.

Day +21

2009-02-11T20:50:00.000-08:00

Short post: just more of the same.

She's not yet engrafted--they were right in their expectation that Zoe's osteopetrotic bones with narrow bone marrow cavities would take longer to "take."

The continued low platelets (hanging out at less than 5) is taking its toll; her tongue is bloody and oozing. At least, the nurse told me, she doesn't have a non-stop bloody nose like some patients get with chronically low platelets.

The music therapist came again today while I was out on a walk (darn!). Apparently she recognized the guy's voice immediately and got a big smile on her face. Jeff said that Zoe immediately picked up her drum stick and waved it around when he started to play.

Did I mention that I believe my daughter to be brilliant?

Thanks to everyone who has tried to set us up with musicians. I've got some good leads, now I just have to figure out how to schedule people.

Day +20

2009-02-10T22:26:00.000-08:00

Today's numbers were down--neutrophils at 317, and WBC's at .7. Fortunately, we were warned that this could happen.

Natalie the PA said that the labs show a snapshot in time of flow. She said it's as if you were to take a picture of a section of freeway: maybe in that second there might not be very many cars in the photo, but the next picture in the next moment might show MANY cars. Zoe's counts are similar, as we hear. Her neutrophils and WBC's course through the blood river; the labs scoop up a sampling and project numbers based on what shows up in that small cross section.

The important thing they consider is whether everything is trending up, not whether the numbers briefly dip. The team still feels, by the looks of everything, that Zoe is trending towards engraftment.
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Strangely, Zoe swallowed two doses of oral medicine this morning--all of the sudden she remembered how to do it on her own. Not an entirely reclaimed skill; tonight's oral dose of medicine pooled in her mouth and led to a little emesis. But, at least she swallowed today!

(Someone mentioned the swallow to be the next bird to watch for--let's hope for a flight of them!)

Her liver numbers--bilirubin levels--were up today, quite considerably. Two things could be the probable cause for that: either sludge from back-up, or liver GVHD. They did an ultrasound today to look for sludge (results to come tomorrow), if no sludge appears, they will assume GVHD is the culprit and administer steroids accordingly.

Of course, my little mind started to chew on the GVHD possibility, but the attending doc said that since her skin rash was treated with a 3 day course of steroids, it was a good likelihood that a short course of steroids would take care of liver GVHD.

I'm pulling for sludge though. Treatment for that would be dietary changes to her IV nutrition, and getting her back on the oral liver support medicine.
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Today was my first day back in the massage studio after 4.5 weeks. Felt good! It's a good thing, though, that we are working slowly back up to a full schedule. Three massages today and I was whooped! (whuped?)
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Check the YouTube link for a vid of Zoe feeling mightly chipper in her bumbo seat and rocking out to Lady Smith Black Mambazo!

Day +19

2009-02-09T21:51:00.000-08:00

Another good day with a happy baby.

Numbers are still going up--neutrophil count is at 475. Inching towards that magical 500 that she has to hang out at or above for 3 days to be considered engrafted. Now the watch out is for signs of GVHD--did I mention that? (ha!) Seventy percent of all unrelated donor recipients get some form of acute GVHD, so they are just waiting for hers to present at any moment.

As the PA Natalie said today, "I'm just waiting for her to rash up!"

I said, "How about the possibility that Zoe could be in the other 30% that doesn't get acute GVHD? Would that work for you?" She loved that idea.

I still try to have no attachments though. (again--ha!)

Zoe had another platelet reaction today--a fever spiked to 39.1 (I can't tell you what that is in Farenheit, but I know it's a fever). This reaction happened after a dosing of matched donor platelets. It is getting to be quite the challenging platelet dance with her.

Ideally they would love to get Zoe off of her IV nutrition as soon as possible, but, as happens with babies who don't eat for awhile, she has apparently forgotten how to swallow. Oral dosings of Tylenol during fever spikes have recently illuminated this development; the liquid pools in her mouth, and then causes her to gag and vomit when it finally trickles down her gullet.

Normally, they would put a nasal-gastric feeding tube from her nose to her gut so that they could get feedings and medication in (almost) the old-fashioned way. But, as Zoe's platelets are so low, they don't want to risk doing anything that might possibly create an injury that could bleed without the ability to clot. Shoving a tube through her nose, down her esophagus into her stomach is just tempting trouble too much.

The ideal thing would be to get her to learn how to swallow again. The OT/PT's here at Seattle Children's are specialists in suck/swallow disorders (we had seen them for help when Zoe was 11 days old and still unable to nurse). But I wasn't too thrilled to learn that part of their assessment involves Zoe ingesting Barium so that they can see, through radiological means, what's going on physiologically.

Well, I've trusted the process thus far, so I guess I will just keep going with that tack. Nothing about this process has been intuitive for an alternative healthcare practitioner like myself; we are well beyond the realm of homeopathics and diet tweakings. I love naturopathy, but have I been recently grateful for the world of allopathic medicine!

Swallow study is scheduled for later this week.
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Got to take that wildlife walk today with a friend who studied as a naturalist. Amazing what a difference trained eyes (and good quality binoculars) can make: she helped me see a beaver-eaten tree I had missed each previous walk, a turtle, a red-tailed hawk, cormorants, a falcon flying in the distance, an eyrie, many different duck species (can't remember them all--write the names down in the comment section, Cinny!), and killdeers. Saw the eagle again--that's 4 for 4 sightings!

Day +18

2009-02-08T20:05:00.000-08:00

And...today was much better!

I came from home to a happy baby this morning--and mama was MUCH happier too after a good night's sleep. Both of our improved moods lasted throughout the day. Jeff would probably have felt better too, if it weren't his night to have slept in the hospital (going home makes a HUGE difference).

When the lab numbers were printed up this morning they were presented to me by a dancing nurse (one of the ones we love)--her neutrophil count had jumped to 450, and her WBC count was at 1.0!! Yay! Very good news. Engraftment is so close we can smell it!

And, I'd love to remind y'all to keep encouraging those donated cells to play nicely in Zoe's body. Now that engraftment is almost complete, the next big issue is how well they will treat her. Keep seeing those cells settling in and feeling a deep sense of home in our girl.

Today I got a good walk in to a nearby wildlife sanctuary on Lake Washington. It's the third time I've been, and every time I've seen what I think is the same bald eagle hanging out or flying around. I've also seen a worm of robins, a paddling of ducks, a merl of red-winged blackbirds, a murmuration of starlings, a murder of crows, and a wedge of swans. Not very exotic birds (aside from the surprising swans), but since the group names are so fun to use--I had to mention them!

I know I haven't said this in the blog recently, but we are deeply grateful to all of you who travel this journey with us. Thank you for feeding us, for loving us, for saying prayers, for sending money, for emailing us, for calling, for writing cards, for commenting on the blog, for cheering us on, for crying with us, for laughing with us, for hoping with us.

Thank you. It all helps, so much.

Day +17

2009-02-07T20:36:00.000-08:00

Today was a bit rougher.

Zoe has been having episodes of pain that seem to be originating in her belly. She starts to pant and fuss, her abdomen gets hard, and it takes a bolus of morphine to get her comfortable again. Films of the area show the abdominal cavity as being dominated by the spleen and liver, with little room for the other organs. The doctor says it's conceivable that even bowel function could be painful when there is so little space for the intestines to function.

Today, one of the episodes was accompanied by her hands and feet turning deep purple--as well as another fever.

Platelet reaction? Well, not really easy to say. The fevers are not quite lining up with the transfusions in an expected reaction sort of way. But, again, they aren't ruling it out.

She was transfused with matched platelets last night--and did not get a boost. Her platelets are at 3. Yikes. The PA said that she demonstrates just about the most extreme resistance to platelets as they've seen. As long as she doesn't have any major bleeding events, this is not a horrifying thing. But, it's still concerning, nonetheless. And, she had a bloody nostril all day--which doesn't do much to calm nerves.

So anyway, the purple extremity episode passed after about 20 minutes. Blood labs taken to look at possible concerning causes came up negative (with cultures to determine possible infections taking 48 hours more to be ruled out).

Ultimately, while they know a heck of a lot about what it is Zoe is going through, they don't know everything. Again, only 7 treated cases of osteopetrosis at the SCCA since 1980--as opposed to the thousands they've treated of leukemia.

Not a lot of comparisons to draw upon for answers and insight in Zoe's case.
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Well, it's been 4 weeks that Zoe's been here at Seattle Children's. Only now is it really starting to grate on me.

I'm starting to feel cabin fever, I'm more easily cranky, and the long-term worry and modulating terror are wearing me down. Things like nurse personalities wield a huge power in terms of me maintaining my sanity, or falling prey to its mad twin. Today Jeff watched me get more and more dower, the more today's nurse made attempts at perkiness and breezy-chattiness with me, and high-pitched jabbering at Zoe.

Yes, I'm probably being insufferably judgemental right now, but I don't even really care. I do my best to maintain good behavior with all the nurses, even the irritating ones, as they are all indispensable to this process.

Some of them simply get more blank stares from me than others.

Day +16

2009-02-06T23:02:00.000-08:00

Nothing to report. Numbers still slowly trending up (the numbers we want to go up, that is), fevers still not convincingly due to GVH, and morphine drip is on its way down.

Hey! Nice change, huh?

Day +15

2009-02-05T21:57:00.000-08:00

The ongoing question is what Zoe's fever spikes are due to: GVH, or....?

A theory that Jeff came up with today was whether the platelet transfusions are causing an inflammatory response in her body. One thing recently discovered through lab tests was that Zoe has quite a few antibodies built up against the platelets transfused into her--a good explanation as to why her body purges them as soon as they are introduced.

They found a couple donors that were HLA matched to her (remarkable, since they told us that her HLA type is very rare), had them apherised, and transfused Zoe with those platelets over two sessions yesterday. No fever.

Then, a "pooled" platelet transfusion (where platelets from more than one donor are mixed together), and she had a fever within a short time afterward. After Jeff brought up his theory, the nurse did a little charting--looking at platelet transfusions in conjunction to the fever spikes--and found that there was a possible correlation.

Even Manley said that this could certainly be an explanation.

Not to make it sound like such a thing wasn't on his radar--he said that it was one of the questions in his mind. I really like how he weighs all the possibilities and doesn't go blazing into decision that will have long term repercussions. He knows that GVH should be nipped in the bud at this stage, but also doesn't want to put Zoe on prednisone unless absolutely necessary.

So, we still wait on that one.

Zoe is due to have two more transfusions from a matched donor. They will be watching her closely to see how she does.

On other fronts, it was another great day as far as Zoe mood went. A lot of talking, smiles and chuckles. Lovely, lovely!

Jeff and I are looking to go back to work on a limited schedule next week (as long as things continue to trend along the same trajectory). Clients and others who would like to get back in our books, feel free to call or email. Otherwise, don't be surprised if you hear from us. Thanks!

Day +14

2009-02-04T22:18:00.000-08:00

We're in that window now, the 14 to 21 day window in which they said that engraftment usually takes place. Keep those fingers crossed and prayers blazing!

The numbers continue to improve; neutrophils are now registering (prior to the WBC's being above 1.0--I guess that wasn't exactly accurate info given to me by a nurse who said they wouldn't show up until then), WBC's are at .6, and lymphocytes are also on the map.

All very good news--and, I am still just trying to focus on what IS. No assumptions.

She's been spiking fevers off and on for the last couple days since they took her off the prednisone. They've run a gamut of tests to see if she has an infection--fungal or otherwise--that might explain the fevers.

So far, the results have been negative (though there are a couple yet to come back). Manley believes that the likely culprit is more GVH showing up (again, common at this stage), and believes that they will have to put her on prednisone again--this time for at least a month.

Now, along with her funny-shaped head, her little cheeks will be fat as a chipmunk's from the steroids.

Hey, as long as it works.

Day +13: The Sound of Music

2009-02-03T19:00:00.000-08:00

Today Zoe's morphine drip was lowered just a smidgen, but it seemed to be enough to bring her out of her stupor.

It wasn't apparent until the music therapist came by and played and sang for Zoe. She went from being still and staring, to active and engaged and even participatory (see the latest vid on the YouTube link). It seemed to put her on a happy trajectory; she's been talkative and playful most of the day since then.

Does my heart so much good!

Which leads me to ask--is there anyone in our Seattle area that can play the guitar, or other portable instrument, and come sing and/or play for Zoe? It seems to be just the best possible medicine for her mind and mood, and the music therapist can only really come once a week. You'd have to be absolutely cold and flu-free and be able to sing through a mask.

Let us know--we'd be so grateful!

Day +12: Hopes for Spring

2009-02-02T21:19:00.000-08:00

Holding steady. Well, despite the platelets that refuse to boost and some mystery as to why her calcium and chloride levels are not behaving as they should.

But--

She continues to do well, all things considered. Her WBC's registered .5 this morning (a very good thing). When they will get to above 1.0 then we will begin to see some neutrophils coming back in--and that will be a VERY good thing.

Today I went for a lovely walk down to the UW Horticultural Center and through the wetlands that surrounds it. Everywhere I saw green buds and signs of life renewing itself.

Though likely no metaphor is more common, there's no other that could better describe what we are witnessing, and continue to hope for, than the return of Spring.

Day +11

2009-02-01T20:16:00.000-08:00

Last night was much better; no worried huddle around Zoe at 3AM.

The respiratory therapist had come the evening before and removed some very impressive clumps of dried mucous (really, mouth boogers) from the palate and tongue. She seemed to breathe much easier after that.

A platelet boost of up to 22 today was followed a few hours later by a drop to under 5. Hmph. Her blood chloride levels were found to be off as well. More platelet infusions, more medicines to tinker with her chemistry.

The girl has so many different things infusing into her it's amazing her body accepts it all (well, not really accepting those platelets, huh?). Since they needed to give her another blood transfusion to bring her hematocrit level up, and since she had so many needed meds using up all her line access, they had to put an IV in her hand for the blood transfusion.

The ordeal this little girl is going through, and she still is just the sweet cherub fighter chick-a-dee that she's always been.

Doc Manley today said, again, that he really feels like Zoe is turning a corner for the better--and he reminded us that he's seen more than a few of these procedures through. He caught my eye to make certain that I was hearing him.

I was, am, definitely pleased--I told him--but it's been my M.O., or maybe my superstitious side, to not take anything for granted about how she's doing--it could all change very quickly. He agreed that that was correct and true. However, his "gestalt" of the situation tells him that she is progressing along very well and continuing on towards good things.

I'm nervous even writing that, I'm so afraid to "jinx" anything. So funny to admit that, and yet--nothing about this experience with Zoe, from the day she was born, has been expected or assumed.

So, can you blame me?

Day +10

2009-01-31T20:37:00.000-08:00

I arrived back at the hospital this morning to a zonked daughter and husband--the night had been a repeat of the night before.

At about 3am-ish, Jeff awoke to a team of people huddled around Zoe trying to assess her labored breathing. Many of the same things happened as the night before: the PICU attending was called in and the respiratory therapy team was summoned. She was suctioned and nebulized with epinephrine, and that seemed to calm everything right down. But not without a lot of drama first.

Her platelets did not boost. They dropped from 7 to 5 this morning (a normal person has arround 150, they would like her to have at least 50). They started her on aminocaproic acid to help her blood to clot in the absence of enough platelets. The fact that she still has a blood clot in her left leg makes the use of the aminocaproic acid a bit risky in that it could increase the size of the clot.

Everything is a tenuous balance in this process.

Despite all that, Manley did say he thinks Zoe is perhaps turning a corner for the better. Her WBC's showed a little blip from 0 to .2, and then back down again. But it's a sign that something is starting to happen towards engraftment.

Her rash is getting better (yay steroids!), but her petechiae is getting worse (boo platelet deficiency!). She got HLA matched platelets last night, but no boost--as I mentioned before. Manley said that a donor was going in today to get apherised for more platelets for Zoe, and that those would be ready tomorrow.

He said that one possible reason the platelet level doesn't boost for her is that her massive spleen is gobbling them all up. Spleens hoard blood, and very large spleens hoard A LOT of blood. Hers is massive, even larger than it was when we checked in. I may have mentioned it before, but osteopetrotic babies' spleens grow very large to compensate for the diminished capacity of the bone marrow to produce and store blood.

On a random topic, a friend wrote me with a very good question: why didn't they just give Zoe Tylenol through anal suppositories when her fever was raging and she was unable to take it by mouth? I asked the nurse that tonight, and the answer was just as good: with mucositis her entire GI tract is torn up and compromised--from mouth all the way to anus. Suppositories have the potential to damage the tissue, thereby opening it up to fecal matter and drastically raising the risk of infection. Also, with her low platelet count, they don't want to do anything that could cause her to bleed.

Well, off to bed. Hopefully this night is a better one for the little squirt. Such a remarkable baby, she is!

Day +9: "Complications are Expected"

2009-01-30T20:23:00.000-08:00

I find I have to repeat that to myself: "Complications are expected," as they told us prior to when this entire BMT process began. It's a series of fires to be put out, and man, is it an extinguisher dance!

Last night was my night to stay in the hospital, and just as Jeff had experienced, I awoke at 3AM to a group of people huddled around Zoe's bed trying to determine whether she needed to go back to the PICU. Her breathing was labored, her temperature climbing, her CO2 gas levels too high, and her blood pressure was registering a wider spread between the systolic and diastolic numbers than they like to see.

Even so, the respiratory therapists who had tended to her the night before seemed to think she sounded better on the whole than the previous night. Her heart rate was better, her breathing rate was less rapid, and she didn't sound as "junky" in her air ways. They decided to confer with the PICU attending before sending her up there. I fell asleep while waiting to hear. I awoke a few hours later in the same room, next to a baby that sounded better, no longer febrile, and her blood pressure was normal again. Phew!

What had changed for the not-so-great was the fact that, on top of her still dramatic GVH rash, she now had petechiae all over her body. Petechiae shows up for different reasons, but definitely when one's platelets are extremely low. They are mini spots of hemorrhage in the skin.

I can't remember if I explained this before, but platelets are the "ingredient" in the blood that causes the blood to clot--a very important function. As Zoe's bone marrow is severely compromised, she no longer makes her own blood, and consequently does not produce platelets.

She's been receiving blood and platelet transfusions regularly since the whole process began, but recently, lab analyses have shown that the last several platelet infusions have not given her any platelet boost at all. They want her at 5o; she's currently at 7, and dropping.

When platelet boosting doesn't happen after a transfusion, they assume that the body and the product are rejecting each other (or, this is what I understood them to say, but in my sleep deprived state, can't be certain). They did an HLA typing to see if they could come up with a specific match for her.

Luckily, they found one pretty quickly. She will be receiving those platelets tonight, and hopefully they will do the job and stick!

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So, a side plug here: Please consider donating platelets--heck just donate blood if donating platelets seems too much. There is a shortage of platelets, and we are learning just how life saving they are for people--such as Zoe--who need them. Do not go to the places that pay you for your blood products. By law, products obtained that way can only be used for research. Donated blood products are used in medical situations.
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They have upped Zoe's steroid dosing to attack the rash more aggressively.

The way Manley explained it (but really, how I remember it--I guess I'm saying don't take my blog for being absolutely accurate medical fact), the donor T-cells are the ones who are attacking Zoe's skin right now. They do remove some of the T-cells from the donor stem cells to limit this sort of thing, but they can't remove them all as they help the stem cells engraft. Too many T-cells removed and the graft fails; too many T-cells left in, and they have a rampage party.

Manley said that the way Zoe's rash is progressing is classic and expected. He pointed out the signs that the steroid is doing its work, and he's really pleased that her fever is down. I think I was fooling myself about her mouth looking better, because it was looking like hamburger today.

Starting now we are wondering if the next morning lab results will show some spiking of her neutrophils and WBC's: the first signs of engraftment.

For now I will take a lab report that shows a spiking of her platelets.

Day +8: A Long Day

2009-01-29T21:49:00.000-08:00

Last night the journey got more bumpy.

It was my night to go home. At 2:15am I was awakened by a phone call from Jeff: Zoe's fever had climbed even higher and she had been heavily laboring to breathe, so much so that she was being sent to the PICU to be assessed. The concern was whether the mucositis had progressed far enough to obstruct her breathing passageway. If so, she might need to be intubated.

The call was a heads-up about what was happening, but Jeff said that I should still wait until the morning to come in. Neither one of us slept well after that.

Arriving this morning at the PICU, I found Zoe to be less febrile than she was in the night, with less labored breathing as well.

But, she was covered in a bright red rash. Hyper-acute GVHD had reared its head.

So, GVHD of some sort is usually expected in non-related donor situations. Manley said that the appearance of this rash is likely an explanation for why she has been febrile for the last couple days: the donated cells have been ramping up, and now we can see that they are sending out the forces to attack the enemy.

Unfortunately the enemy is our daughter, so this is not acceptable.

The question is whether they can head off the attack and calm everything down again. She was given a dose of Methylprednisone today, and will continue with it for three days. If no acceptable rash reduction response, then they will continue another three days and reassess. If she does respond well, then they can stop it without weaning her off of it during those six days of treatment.

If the rash goes away with the steroids, then that's a good sign that the GVHD is responsive to therapy, if not, well--we won't go down that road yet.

Please hold the truth and the knowing that this GVHD rash is already gone, already perfectly resolved.

The upside of the rash is that it is an indication that the donated cells are taking hold and starting to engraft. Manley said today that it is possible for engraftment to happen as early as day +10. He also said that the first place that the reappearance of WBC's in the body have an effect on is the improvement of the mouth mucositis. I don't know if I'm fooling myself or what, but it does seem to me that her mouth is looking a little better than it was even this morning.

We were sent back to our room around noon--and good thing. They were threatening to give it away as the hospital and the SCCA unit are full. Manley wanted to wait for awhile once we were back on the floor to see if the rash would go away on its own. It was seeming to fade when her fever reduced, but after awhile it was apparent that the angry red dots were planning to hang around. Steroids were ordered.

Administration of the steroids is not something done lightly for transplant patients: infection risk climbs higher, blood sugar and blood pressure rates climb. We were told that the cold and flu season hasn't even peaked in our region yet--that we are only at 5% of what they expect the cold and flu season to reach this year. Steroids further errode what little immune system the transplant patient has, further creating risk in a risky time of year.

The flu virus can slough off the skin and body of someone who feels no symptoms--and be transmitted to our girl. In her immunocompromised state the flu would be terrible and possibly deadly. This will be the first time Jeff and I will have ever recieved the flu vaccine. Just to be safe, we are going to stagger when we get it--first me, then Jeff a few days later. That way, if we were to have a reaction to it, we won't both be out of commission for Zoe.

Not taming the GVHD rash is not a good idea, however. It needs to be headed off, or else it can take up permanent residence and get worse. The risks on both sides of the issue are always considered, and they try to do what's best for Zoe. We have to be even more vigilant about hand washing, isolation, sanitation around our girl--if doing it more so than we already have is even possible.

While sitting here and typing away a nurse popped her head in to find out if Zoe had ever had, or been exposed to the chicken pox. Apparently, an attending doctor in the SCCA unit just came down with them and they are trying to get an idea of who is at risk here in the unit because of him.

Holy hell.

I myself have never had it, and am definitely not immune to it either. How a doctor could be walking around Children's and not be immune to chicken pox is beyond my comprehension.

While I was busy digesting this information, the nurse realized that the doctor did not work with transplant patients directly, so we may be in the clear. Zoe would not have been breathed on by him, and I don't think I could have contracted it by passing him in the halls.

I hope.

Day +7

2009-01-28T22:05:00.000-08:00

Zoe is simply hanging out at her very high fever--104F-ish.

This morning when I looked at her, I did a massive shudder as I could see that Zoe's head had dramatically bulged along the cranial surgery sites on the right side of her skull.

In pictures we've posted of her--just have a glance at the one on the title page-- you may have noticed that the right side of her head is strangely bulging. The right side is where a lot of reconstruction took place, as well as a significant hole during surgery in the dura-mater wrapping of her brain. It's where she had that leak back in early December, and now it's where her skull is continuing to warp and inflate with her fever.

Dr. Michael Cunningham came by today to examine it--it was very good to see him. He brings a warmth and humor with him that's nice to be around. He wasn't acutely worried, but did order up a CT scan to make certain her ventricles weren't overly large (a sign of drainage issues).

While I was away on a walk today, the results from the CT came back: Zoe's ventricles were "slightly" larger, but not enough to concern him or the neurosurgeon, Dr. Avellino. They're definitely planning to keep their eye on her though.

So far, no concerning results back from blood culture tests. Manley tells us, again, that fevers can be common--even as high as what Zoe has. Apparently when the GI tract mucosa breaks down it sends GI bacteria into the body, and fevers can result.

With the mucositis that Zoe is experiencing, it's difficult to get her to swallow Tylenol to bring the fever down. Her tongue is swollen and bloody; her mouth looks like a cavern full of fleshy stalactites. A nurse mentioned today that anyone who could formulate an IV version of Tylenol would be rich person. They continue to up Zoe's morphine drip--as expected--to deal with her deepening discomfort.

Oh, forgot to mention yesterday that there is a manufacturer's shortage of an anti-viral that they have as an important part of Zoe's protocol. Manley said that patients such as Zoe will be given precidence, but it's concerning nonetheless. Not "tear one's hair out with worry" concerning, but definitely a furrowed brow "hmmmmm" sort of concern.

Speaking of hair, Zoe's is falling out fast. It's going to be awfully strange looking at that bumpy, distorted head without any hair to camouflage it.

She's still a beautiful baby in our eyes.

Day +6: Some Better News

2009-01-27T18:35:00.000-08:00

Dr. Manley just stopped by to let us know that the urine sample did clarify the initial screening that said there was blood in the urine: the urine actually had hemoglobins in it, not red blood cells.

The initial screenings are done via paper strips that indicate the presence of blood proteins. The actual urine test that is done in the lab can further characterize what the paper strips broadly interpret. Red blood cells in the urine would be quite concerning, but the presence of hemoglobins is merely a by-product of the blood transfusion she had last night.

That, is good news.

We still wait to see if anything else will show up indicating possible infectious causes for her fever that continues to burn, but nothing yet.

Manley takes comfort in the fact that, despite her fever, she looks pretty good as far as color and vital signs go.

Day +6: Fever City

2009-01-27T17:29:00.000-08:00

Buckle up, the ride has gotten bumpy.

I arrived back at Seattle Children's this morning to Jeff telling me that Zoe's temperature was hovering at 40 celsius (that's 104F for all you Americans) all night--and she's continued that trend all day today.

Also, they've found blood in her urine.

The blood samples taken 24 hours ago did not grow any signs of bacteria yet. They just pulled some more blood this evening to be tested again. Their approach is to draw blood for testing once every 24 hours that the fever is still present. Her urine has also been sent to be tested for infections as well.

The concern is that her high fever and bloody urine points to a higher likelihood of some sort of infection, possibly bladder related.

Ugh. This is it, right here.

This is where the work for parents, like us, of children, like Zoe, lies. The watching, the waiting, the working to understand that all we can do is sit here, love her, and not let the pit of fear that this huge unknown creates overwhelm us.

Day +5

2009-01-26T22:58:00.000-08:00

So, today was a day of dichotomies.

Zoe started the day with more verve and pluck than I've seen in her since last Wednesday. She had periods of chattiness and even happy playfulness that were great to see after several days of pain and misery.

Then the fever started to spike.

They measure everything in celsius--anything up to 37.4 is not considered worrisome. At 37.4 they begin to monitor the temperature every 15 minutes. She got up to 38.6 this afternoon. They took some blood samples to have cultures run; they moved her chest X-ray up from tomorrow to today to see if there is anything going on in her lungs.

The upside is that her blood pressure is also a bit elevated--the nurse says that a fever with accompanying low blood pressure is more worrisome. She also, after a nap, still maintained the heightened level of alertness and engagement--also a good sign. She didn't seem to be in too much discomfort.

They tell us that fevers are common in transplant patients, and they can't always say why they occur. We'll know more in 48 hours when the blood culture results return; in the meantime they will continue to monitor her closely.

As my chiropractor, whom I visited for a much needed adjustment today, said--I have plenty of good reasons to either worry, or not worry.

So, where do I throw my energy?

Really, do I even have the capacity to choose?

Ask me again in a couple of days.
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Check the YouTube link: Zoe is continuing to expand her abilities, despite her challenges...

Day +4

2009-01-25T20:53:00.000-08:00

The doctors keep telling us that Zoe continues to do great. I'm taking their word for it as it's hard to tell with her mouth a mucousy and torn up mess, as well as with her discomfort levels climbing.

But, her numbers continue to look good--liver function and other markers they look at are plugging along. The main development is that they've started an oxygen stream blowing by her face to help keep her oxygen saturation levels up as they had started to dip. Apparently this is a common occurrence in babies as the mucositis progresses; the smaller air passages get more easily gunked up with the sloughing of the mucosal lining.

She is on 100% TPN now that she's not taking a bottle. She can't swallow anything now.

Jeff and I are doing okay. This is definitely a grind. The person who spends the night at the hospital ends up doing a lot of napping the next day. And, even with every other night spent at home, we are both experiencing pretty profound sleep deprivation.

I keep wondering if I am on the barest verge of coming down with something, facilitated by exhaustion; so I constantly pound the immune enhancing supplements and will myself to stay healthy.

There is no other option!

Day +3

2009-01-24T22:14:00.000-08:00

It's getting more challenging. Zoe is in quite a bit of discomfort--and it's hard to watch. Her mouth is tearing up inside, she has so much mucous, she's miserable.

I know she won't consciously remember any of this, but it's very difficult to watch an innocent go through something they don't comprehend.

She's gotten so intolerant of people putting things in her mouth, especially the suction tube, that she screams angrily and whips her head from side to side in protest. At least it's clear she's maintaining some neck muscle tone.

We see sun breaks of playful Zoe here and there, but mostly otherwise she's conked out from the meds. I'm learning to love narcotics if only for the way they help her manage the pain.

I'm continuing to explore the swanky real estate around the hospital. Today my friend Risa and I walked the neighborhood and came upon a couple "free" signs in front of a water-view house. A jogger stroller and a kid's bike that attaches to the back of an adult bicycle: both in pretty great shape. We trotted back to the hospital with the bike balanced between us (neither of us wanted the jogger)--her son Zane is in for some great fun! One Laurelhurst person's junk...

Day +2

2009-01-23T23:22:00.000-08:00

Short update: Zoe is still doing well--for a transplant patient anyway. She is on a constant morphine drip now for pain management, she only took two ounces of milk by mouth today, and she alternates between cranky and sleeping--with a few bursts of her usual happy self here and there.

They say this is all usual and expected.

I can't decide if I want the waiting period between now and the hoped-for engraftment to fly by, or inch along. Certainly I am not in love with living mostly at the hospital--but, in the present moment, Zoe is doing well.

The present moment is all I know. I'll-- no wait, I do--take it.

Day +1

2009-01-22T21:41:00.000-08:00

They said that Zoe would feel worse after the transplant, but I didn't know it would happen so fast. About an hour and a half into the transfusion she projectile vomited. I was worried that it was a reaction to the cells, but the nurses assured me that since her temperature and blood pressure were fine, the nausea was likely only from the chemo.

Today she has been cranky, cranky--crying a lot from pain. They had to give her a couple doses of morphine to get her settled. Her food intake is rapidly decreasing; tomorrow they will likely start her on the IV nutrition known as Total Parental Nutrition, or TPN.

All of this has been expected. But, it's a bit jolting to go from being lulled by her ongoing happy and unfazed self, to this sudden and rapid shift in mood and wellness. Not that I blame her at all. In her place I would be a much bigger mess by now.

We are told that Zoe will be feeling pretty rotten for a solid eleven days or so, but they will be managing it as best as they can. The trick is to help her get out of much of the pain, but not have her so drugged that she sleeps all the time.

Aside from drugs, her best distraction from the pain continues to be singing to her and music.

We've been making up a lot of songs.

Day 0! Day-ay-ay 0!

2009-01-21T16:04:00.000-08:00

And, hour "0" for that matter. The stem cells are infusing at this very moment. Check that YouTube link for video of the occasion!

We are tearful, happy, and also scared.

The "Beginning."

And, hopefully of good things to come.

Day -1

2009-01-20T22:16:00.000-08:00

Wow. What a day! A new beginning for our country, and the cusp of a new beginning for our girl. Seems appropriate.

Her day of rest today was "uneventful"--how I am starting to love that word! She was a bit fussier, a bit more pallid in color, but other than that, it was just another day like the seven days before it.

Tomorrow the donor cells are due to be infused at 12noon. As we have not heard anything differently, I suppose we are to expect that the "harvest" went as planned. They have been flushing the Cytoxan from her, and then have to wait 12 hours after that to transplant.

Tomorrow will be her new "birthday."

Then it's a whole lot of watching and waiting for the next two to three weeks until it will be clear whether the cells engraft or not.

Let's all see those cells settling into her marrow space quickly, with ease, and with the innate sense of rightness and "home." Cells that infuse her with the osteoclasts she needs to cure her disease.

This is the prayer I ask for.

Day -2

2009-01-19T23:02:00.000-08:00

Zoe's last dose of chemo is almost totally infused. She's sleeping in bed in front of me, still tolerating her chemo amazingly well.

Today's little excitement happened when I picked her up for one of her twice daily weigh-in's. Somehow her line that was infusing the ATG came undone and popped off. Some of the chemical splattered, and I got to experience just how caustic it is. That stuff burns! I got a couple drops on my face and neck--Zoe got some on her skin. We both received welts from the contact.

The tubing was replaced, and she was quickly hooked up again. No harm was really done, but it was startling to feel just how nasty that stuff was. I am truly amazed she's tolerating it so well. Of course, her experience is also a testament to the science of the regimen she's undergoing.

We were visited by musicians today. They played the sweet song of "Dream a Little Dream," and Zoe was rapt with attention. Come to find out this was their last day here. The funding for the program they were a part of, the "Big Apple Circus", has been cut. For eleven years children here at the hospital have been visited and entertained by members of the Big Apple Circus, but there's no longer any money for it. Another economic casualty.

I have to try to remember not to wait this late to post--my brain doesn't work as well as I would like it to! But really, that's been the case most any time of the day these days ;-).

Day -3

2009-01-18T20:04:00.000-08:00

Zoe keeps on trucking; other than our locale, the tubes coming out of her, and the fact that she's been smelling faintly of chemicals, one wouldn't really know that she's not just having her usual, normal existence.

There are cracks that reveal some of the intensity for her--today one of her doses of Benadryl was 30 minutes late (doses come every four hours now), and it showed. She was fussy, agitated and not easily comforted. Dosed up, food in, and she was a happy girl again.

Another day of glorious sun, and this time our gracious nurse shooed both Jeff and I off for a walk together. We explored the surrounding neighborhood and got some great vistas of Lake Washington. Money may not buy you love, but it will certainly buy you a gorgeous house in the Laurelhurst neighborhood!

Jeff was fine with me going home early tonight--and I've found myself rattling around aimlessly in my house. Too distracted to do something productive, too cooked by an overdosing of TV and internet to feel alright zoning out some more. Guess I'll go take a hot shower and try to go to sleep early.

Tonight Zoe has been getting a blood transfusion as her hematocrit levels are slightly down. Her fluid balance in and out is doing pretty well, she's not had any reactions to the ATG and Cytoxan so far. It's easy to find myself thinking that not much of anything is really happening to her because she doesn't really manifest many outward signs of the process--yet.

The aunt of the British baby with osteopetrosis I mentioned before just reminded me that after the actual transfusion of the transplant she will really start to feel bad. Buckle up, Mama.

Day -4

2009-01-17T22:43:00.000-08:00

Nothing really new to report: Zoe continues to do well. Last night was a bit of a grind for Jeff and Zoe as the nurses had to check her vitals and change her diapers every two hours. We'll see how much sleep she and I get tonight.

They have her on ATG and Cytoxan. With the ATG comes regular doses of Benadryl every four hours to fight nausea. Consequently she is sleeping a lot more often.

Today was glorious and sunny. Both Jeff and I got to get out for a walk. Tonight is his night with the guys.

Zoe and I stayed in and discussed the finer points of eyelashes and noses. Also, apparently there was a man, lived in the moon (and for some reason, he was oddly named "Aikin Drum").

Day -5

2009-01-16T23:15:00.000-08:00

Late to post today; things are still holding steady. The attending doc told us that if we only see her at the beginning and end of each day, Zoe is doing well. It's when we start seeing her in the middle of the day that we will know that Zoe is heading into scary territory.

So far, we are only seeing the doc at the bookends of the day.

Zoe is still eating by mouth, and her mostly good mood is being maintained. Her last dose of Busulfan was last night at 2am. Today they've been constantly testing her sodium levels to make certain they're at appropriate levels before they start the Cytoxan. As her levels have been low, they have been infusing her with saline to raise them to appropriate levels.

The process is still on schedule.

I got to go out with some girlfriends tonight and have a fruity cocktail; Jeff gets to go out with his buddies tomorrow night. Somehow a rhythm is emerging in our process. Even Zoe is settling into a routine of wakefulness, sleep, and play times.

Tomorrow the intensity will ramp up. We are told that she will feel worse with the Cytoxan and ATG. My baby trooper.

Day -6

2009-01-15T20:49:00.000-08:00

Hip, hip, hooray--we are in a larger room! We just got moved a couple hours ago, and man-oh-man, does it make a huge difference. The other room was so small there was no place for a soap dispenser--really.

This room has about three times the floor space--and there is a proper bed for us to sleep on (instead of a saggy, lumpy sleeper chair). Counter space! Closets! Shelves! Bigger window!

Do I sound pleased? Anything that promotes parental sanity is a big bonus.

Zoe's time with the Busulfan is almost over. She's been a total champ. According to the doc, and also a nurse we talked to today, a lot of kids are totally off of food by mouth by this point--even before this. Zoe is still truckin' with her goat's milk, and is even still letting us stuff some solid foods into her (but with greater reluctance).

Tomorrow they start the Cytoxan. The doc said that they will be pumping her with fluids along with the Cytoxan, as this particular chemo drug will damage the bladder if it hangs out there for too long. So, they aim to flush her out often.

The challenge with babies, we learn, is how to keep them balanced on the fluids in and out. They can tend to hold onto fluids--as Zoe is doing slightly now--so they give them diuretics to flush them out. Over-much of the diuretics, and the kidneys work too hard. It's a fine-tuned balance they try to maintain.

Oomph, tired. This sitting around and being a neurotic parent of a transplant patient is exhausting. Night-night.

Day -7

2009-01-14T18:54:00.000-08:00

Fortunately, nothing interesting to report: more of the same. Zoe continues to tolerate the Busulfan pretty well, and Jeff and I are learning how to settle into this experience.

Today we took turns getting out for a walk to U Village--only a 15 minute brisk walk via the Burke Gilman Trail. On his walk Jeff discovered that, as parents of a child being treated long-term at Seattle Children's, we get to work-out at a local gym for free. Nice!

Zoe is currently animated and chatty--and this after having the one-two punch of the Busulfan every six hours, and a recent dose of an immunoglobulin that required preemptive doses of Benadryl and Tylenol to keep her from reacting from it too much.

I am having to get over my Seattle sensibilities that dictate I recycle every last possible piece of trash. Here at the hospital they throw away things that make me cringe. Every time they bring us goat milk it is brought in a plastic baby bottle that then goes straight to the trash when finished with. Plastic bins, pitchers, cups, utensils--all thrown away. Someone needs to take the recycling revolution to the hospitals. They do have a recycling bin here and there in the halls--but mainly for paper and glass bottles. Not really a stout enough campaign to put a dent in the waste that this place produces.
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Oh, forgot to mention that we have to wear gloves while changing Zoe's diapers now. Her waste is toxic and hazardous to anyone who touches it.

Bath time

360 degree view of our room.

Day -8

2009-01-13T18:28:00.000-08:00

Zoe's been on the Busulfan for a day and a half now. She's mostly herself, but a bit crankier and less energetic.

Jeff stayed with her last night. They were more proactive in helping her sleep as it appeared that she was heading for the same wakefulness issue as the prior evening. With the help of Benadryl, she slept from 11pm to 4am, and after a bottle, fell back asleep until just after 7am.

Jeff and I trade off with baby duty while she's awake. We try to get a little time for ourselves away from the room. There is a therapy pool with open swim hours, so both Jeff and I have had an opportunity to take turns and go get a little exercise.

Both Zoe and Jeff have been napping for the last hour and a half. The doctor stuck her head in to tell me that they are pleased with Zoe's blood chemo levels, so they won't do much altering for now.

I asked her to remind me when patients start to really feel bad, and she said that most patients don't feel really awful until a couple days after the transplant infusion takes place. The actual days of the conditioning are characterized by some queasiness and fatigue, but in general are not usually terrible for the patient.

The mythical bacon here has lost a bit of its lustre for me. It's still as good as I remember it, but I think my body craves it less now that I'm not breastfeeding any more. Ah well, breakfast at Seattle Children's is now just another meal--and no longer the highlight to look forward to.

Perhaps I can ferret out another culinary love-affair to be had here, but somehow, I doubt it.

All Settled In: Day -9

2009-01-12T13:47:00.000-08:00

We are back at our home away from home: Seattle Children's.

Yesterday we checked in at 4:30 and were shown the tiniest room that I believe exists at Children's. After a myriad of vitals assessing Zoe was given Dilantin at 9pm, and a blood transfusion at midnight. Jeff and I agreed that I would stay with Zoe the first night; Jeff headed home for bed at about 11pm.

Zoe did not, could not fall asleep at all. Finally, after hours of Zoe's fussing, the night nurse told me at 4:30 am that the Dilantin infusion may have had something to do with the wakefulness (now she told me!), and offered to give her a dose of Benadryl to help her fall asleep. As I had not slept a wink along with Zoe, I have to admit I jumped at the offer of a sleep-aid for the tyke. I, now a basket case before the first 24 hrs in the hospital, had called Jeff at 4am to come spell me so that I could sleep. He came, I went home for a few hours, Zoe and I both caught up on some shut-eye.

Things are not quite as glum now. Amazing how sleep can improve one's outlook.

Zoe has had one dose of the Busulfan this morning, and is currently getting infused with her second dose. Busulfan is a particularly nasty chemotherapy drug that only gets used in rare cases such as bone marrow and stem cell transplants. There is a very small difference between an ineffective dose and a dose amount that will completely kill off one's bone marrow. Dreadful stuff, but I try to remember it's a necessary part of her cure.

Jeff has to do a lot more of the baby comforting for now; Zoe has finally figured out that she misses mama's milk and often gets quite upset when she hears me or is held by me. Oh baby!

We are in "isolation" due to the corona virus that Zoe has. This adds an even more complicated spin to an already challenging situation. Due to being in isolation we are not allowed to go to the common areas such as the family and nourishment rooms in the SCCA ward. We have to rely on the nurse to bring us food we have in the refrigerator--and the food that is brought to our room is not allowed to go back to the fridge as it is seen as "contaminated" and may not comingle with food from other rooms.

So, on that note, if you are signed up to bring food to us (and thank you, by the way), we can't put leftovers in the fridge. Individually wrapped servings are fine: they can go directly in the common fridge and be brought to our room as we need them.

We asked how/if the lingering of the corona virus would affect Zoe when she has no immune system. Again, it's not seen as one of the deadly ones. They expect that viruses will show up when she is immunocompromised. As they already know she has a corona virus, they will know to specifically monitor for it, as well as stay on the lookout for others.
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In the title of this post you might have noticed "Day -9". How the counting for stem cell and bone marrow transplants works is that transplant day is considered "Day 0". The conditioning days leading up to Day 0 are negative days. So, we are at nine days prior to her stem cell infusion.

Going in on Sunday, but Hair Today

2009-01-09T22:13:00.000-08:00

We were told that actually Zoe won't be checking in to the hospital until 4pm on Sunday. Turns out they need extra time preparing the stem cells before they are infused into Zoe. The donor will keep to the same schedule.

The next day, Thursday, after Zoe's line placement and ER visit we went back to SCCA for a data review, dressing change, lab draw and infusion.

At the data review we met yet another doctor (lord if I can't remember his name) who ran us through things to expect throughout the process. Salient points: one day of Dilantin, 8 days of chemo, 1 day of rest, stem cell infusion. While stem cells generally take about 14 days to engraft, they expect osteopetrotic babies to take up to 21 days. After engraftment then it's a waiting game for the WBC levels to come back up to acceptable levels.

The Doc said that complications are an expected part of the process. It will involve many, many fires--big and little--to put out. The good news is that babies tend to do a lot better than adults with transplant. Bad news includes things like the chemo making Zoe sterile, as well as heightening her risk of contracting leukemia, lymphoma or some other cancer down the line--in about 15 years.

Well, there's a lot more bad news than that, but I just don't really want to think about it right now.

The lab draw and infusion were heavenly, compared to what they were like prior to the Hickman being put in. She actually slept through them.
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So, about the hair. It's gone. Mine, that is--and Jeff's too.

I felt like doing something drastic, so I shaved it off (well, Jeff actually did) and I am sending it to "Locks of Love" to be made into a wig for a child cancer patient.

Our friend Tyler donated his hair as well, and we had quite the fun shaving party--click here to see some pics. Also, check the YouTube link--I'll post a video there.

Extreme times call for extreme measures--within reason!

Back again

2009-01-07T23:14:00.000-08:00

It's 11:15pm and we are hanging out in the ER.

After a two hour nap, Zoe woke up with blood soaked through her jammies. The area around the little disk on her chest (see pics on the last post) was covered with a pool of blood underneath the dressing and was leaking out rather determinedly.

We paged the on-call thoracic surgeon, and he agreed that we should go to the ER to have it looked at and dealt with.

So far, those who have looked at her agree that the bleeding is due to the combination of her low platelet count and the blood thinners she's on.

Her dressing has been changed and we are waiting for discharge.

When driving here we mused that this would likely be the first of many trips to the ER.

Transplant experience is usually never straight forward.

After a long day

2009-01-07T20:18:00.000-08:00

We checked in this morning at 11am so that the HemOnc (hematology-Oncology) unit could infuse Zoe with platelets and hydrate her prior to her 3:30 surgery. A lab test on Monday had shown that her platelet counts were quite low (unsurprising for an osteopetrotic baby), necessitating the transfusion. As she was not allowed to have food or liquids past 10:30 am, they wanted to keep her hydrated intravenously.

It all went quite smoothly; the biggest stress was dealing for hours with one very hungry and unhappy baby. The actual procedure was only an hour, but we didn't leave the hospital until 7pm--a full 8 hour day.

Her line looks good, her belly is now full, and she's snoring in the little bed behind me.

While in the hospital we got a tour of the SCCA unit at Seattle Children's. It is isolated from the rest of the floor with doors and big signs that scream "IF YOU ARE SICK, DO NOT ENTER!" It has its own HEPA filtration system separate from the rest of the hospital's (something I had been wondering about. It has play areas, TV areas, a teen room, family room, and lots of bikes and big wheels to ride around the hallways. Jeff, of course, wanted to know if he could ride the bikes too. We saw a small unoccupied room as an example of what we might be staying in; they tell us that the big ones are currently full, but that we will likely be able to move into a big one later.

It turns out that we will be able to have visitors while in the SCCA unit, as long as they are well. I would say, no small kids though--it's too tortuous for a non-patient child to understand that they just can't play on all the great (and sanitized) toys scattered all around.
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We got the transcription notes back from last week's big meeting, but I just haven't even opened them yet. I probably won't revise that last long post as promised. Too much.

I found out why they preferred bone marrow over stem cell donation: reduced risk of GVHD with actual marrow donation. Donor services said that they did send the donor the message that the docs would much prefer marrow, but the word back from the donor was "absolutely not," she was only willing to donate stem cells (stem cell donation is through blood pheresis , marrow donation is through surgery done under general anesthesia).

I spent a bit of time being really frustrated with this--why would someone sign up for donation and not be willing to go all the way?

Meeting with a donor services person put it into perspective for us. We have a 10/10 match--this is wonderful. None of the other osteopetrosis transplants at SCCA have had a 10/10 match. Zoe has a very unique and unusual set of genetic encoding--so it's great that there is even such a good match. A 10/10 match takes precedence over the type of product, so a 10/10 stem cell donation is seen as preferable to a 9/10 marrow donation. The refusal to donate marrow may be based on medical reasons (an allergy to anesthesia for example) over personal preference--but privacy laws will not let us know why.

And, the donor still has quite an ordeal to commit to donating stem cells: she has to have daily shots for 5 days prior to the donation that will boost her stem cells. These shots will make her experience flu-like symptoms and she must be monitored for 2 hours after every shot. Some employers don't give benefits for marrow or stem cell donation procedures, so she may be doing this on vacation leave or her own dime as far as income loss goes.

She has signed the consent for the procedure, so that says that she is committed. I asked what the follow-through rate was for donors, and we were told it was surprisingly high. Apparently, those identified as matches who go through all the preliminary testing are very well aware of the important role they play.

So, keep our anonymous donor in your thoughts and prayers so that she is supported in her process and able to complete the donation successfully, without harm to herself or livelihood.
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We learned how to care for Zoe's Hickman line yesterday (only yesterday?? seems like ages ago). We are going to become her dedicated nursing staff. Jeff already gives her twice daily injections of blood thinner and three times daily doses of medicine. In the hospital these duties will be taken over by the nursing staff, but when we go home again, there will be much to do for our girl. We are told to expect her to still be on an IV when discharged, and she will need all sorts of maintenance while we wait to see how successful things are in the long run.

But I get ahead of myself. We still have to get through the short run.

Tomorrow we return to SCCA for something called a "data review", her dressing will get changed, lines flushed, she will get a blood draw (through the line; no more pokes), and we will take some sort of class that I have forgotten what it's about. The lab draw got added on today as we were told that SCCA received a sample of the "donor product", so I guess they are going to do some more matching or cross examining or such.

My mind loses the details when it's tired.

By the way, while we do check-in to the hospital on Saturday, she will only be getting Dilantin that day. As one of the chemo drugs has the possibility of causing seizures, they administer Dilantin as a preventative measure. Sunday the chemo will start.
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I've made friends with the aunt of another little girl with osteopetrosis who is in the UK. I found her by doing a search on YouTube using the word "osteopetrosis". Check out her link. As the baby, Alishba, is Asian, there was no donor match to be found. Two of her aunt's videos are entreaties for Asian people to become donors. Alishba has since been transplanted with a 5/6 cord blood match. Her transplant process started shortly after her first birthday back in the end of November. So far, she is doing well. Her videos remind me so much of Zoe--all sweetness.
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Last Friday we experienced our Christmas-After-Christmas, sponsored by our good postal workers at the Bitterlake Station, Seattle. Carol, Jody and Dan showed up bearing several gifts all beautifully wrapped. Many tears and many smiles--for everyone. We were so touched by their generosity. Many things they gave us we needed; we sent those things we could not use on to the women's shelter and food bank so as to pay the blessings forward.

Getting to know the wonderful people of our local post office makes my connection to our neighborhood and community feel stronger. It's too easy to feel isolated, especially in the midst of a medical saga; everything that chips away at that isolation helps to contribute to good medicine for us.

So, on that subject, I--we--thank all of you who check in to this blog regularly, those who leave comments, send us email and cards, and call us. You are an important part of our process: you also combat our isolation and help our sanity. If we don't always respond, know that your messages are so very important--and very needed.