Day +97

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

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

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!

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

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:

1. 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).
2. 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.
3. 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

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

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

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.