Day -1

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

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

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

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

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

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

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.