Day +82: Talking About Release

Today’s clinic visit brought interesting news, there was talk for the first time about a release date. Release at this point means being allowed to return home and switching our long term care to Wake Forest University Hospital (Brenner). They suggested we could be released as early as two weeks from now, but I don’t think that it’s likely to happen that soon, mostly for our own reasons.

Michelle and I want to be sure, absolutely sure, that before we leave Duke’s care and the care of the doctors who now know Zoe best, that she has no dangers remaining, beyond the normal risk of infection. We want her graft to be firmly in place (it is), her counts to be at a stable level (not quite yet), and more than anything, her lines to come out.

Right now we’re having a very messy time with her feeding and medication. Zoe came off of the IV nutrition very recently, but we’re still struggling to get her intake up to where she is supposed to be. She has lost a little weight — which is probably a good thing — but we don’t want her to lose any more.

Generally at this age kids are supposed to be taking in around 30oz per day, however Zoe is closer to 15-20 most days, not including her meds. Her meds add another few oz, but the concern remains that she hasn’t found her groove yet with feeding.

In addition, her meds are a mess. We have a terrible time getting her to keep the oral meds down, but the only way to get her lines out is to go on all oral meds. A conundrum. We’ve asked to have her go back on Zofran for spit-ups in order to try and keep more of her fluids and oral meds down.

In general, her age is such that she has suddenly found her voice (fussing more than she used to), her strength (she yanks at everything, swats away syringes, etc), and her will to drool. Suddenly nothing can be easy, as if it ever was.

If I stand back, I begin to realize how far we’ve come. We’re talking about going home at some point in the next month or two, and that wouldn’t happen if she were in serious danger. Zoe’s growing up really fast now, someone opened the gates while we weren’t looking and she is off and running.

These are great things, but somehow, no matter how many steps forward we take, there still seems to be something to fret about.

I suppose at least the things we’re fretting about now are much more reasonable than life or death. I have a feeling that, once these few weeks of rough travel pass and Zoe has learned to eat her solids and her med situation is stable again, the rest will sort itself out.

It’s very hard to shift out of emergency gear though.

Day +68: Changes Afoot

Zoe had a great day at clinic — or is having, I should say. We’re still here, getting the last of her Monday infusions.

WBC count was at 2.4, so she did get GCSF again, but as I mentioned previously it seems a matter of routine now, not concern. No one is worried that she will not eventually grow her own WBC more quickly.

The big news of the day is that we’re going to try to get off of TPN. Zoe has been eating more voraciously these past few days, particularly in the evening as the effects of the TPN wane over the course of the day.

We’ll be really pushing to get her eating as much as possible so that our trial run is successful, and she does not need to return to it (ever!).

In addition we’re moving to oral steroid (hydrocortisone), which the doctor indicated may accelerate her loss of cheeks and such a little more. We have the option of trying her off of the Zofran as well, which we’ll be taking. If she has increased spit-ups and nausea, we can always go back.

Next week if all goes well we can move her to oral Tacrolimus, which would have her completely off of IV meds, setting us up to get the lines out and a porta-cath in. That would mean real baths and even some pool action, which would be exciting indeed.

Dr. P stopped by to go over everything, and when I asked confirmed that her chimera results remain at >98%. He was very non-chalant, and indicated that he has no concerns about her graft whatsoever at this point. “It would be rare indeed” were she to have a graft problem with where she is at this point, he said. That’s a big relief, I’ve been anxious, constantly waiting for something to take a turn for the worse with that. I will (try to) stop stressing now.

All of this together means we’re one step closer to that normalcy thing I’ve been talking about. Get her to oral medications, eating on her own, lines out of her chest, and she’ll be much better off. I would say much happier, but honestly I’m not sure there is such a thing as a happier baby.

And that, friends, makes me happy too.

Closing In

Day +40. We have been in the hospital at Duke for forty-six days now. That plus our time at Wake Forest, and our inpatient days so far this year have totaled a little over seventy days. That time has brought Zoe to a new level of health but has worn her parents down with week-long colds and an injured arm. Our poor dog has even been sick! Everyone is healing of course and trying to focus on what has gone right, because most importantly, Zoe is getting better.

The unit itself has been a sad place the past several days as two patients died at the end of last week. They each had had a long, hard fight with their illnesses. Early on one of the nurses described 5200 as the place that families come for their last chance. That is the sober reality of a bone marrow transplant unit.

Our families had been fairly healthy prior to Zoe getting sick. We had never encountered any major health problems and probably took our own and our childrens’ health for granted. Having Zoe come close to death, and talking with numerous other families who have lost children, really puts in perspective how every day is a gift to be lived to its fullest, as all we really have is today.

In an effort to put our journey into perspective I took Zoe out and around the hospital yesterday evening while she was unhooked from her lines and given a pass to go off of the unit. We walked down to the main entryway of the hospital and Zoe watched with great interest all of the passersby, the fountain and the brightly lit, open, ceilings.

We stopped for a few minutes and tossed some change into the fountain while we made some wishes for the future. Then, we moved on to the courtyard where Zoe spent time outside, something we all take for granted, but something that she has not been able to do much of at all so far in life. She seemed to appreciate the breeze on her face and the chirping birds scampering about.

From the courtyard we wandered to the Children’s Outpatient Clinic wing where we stopped to check on Lucky the Fish. I think he recognized Zoe as he swished his tail and scuttled away to hide behind some seaweed, and when we went to find him he came out from behind the bushes, hovered in front of us and then scuttled off again as if to engage us in his game of hide and seek. We played a few rounds with him, how could we resist? We just love Lucky and his fish freckles. Seeing him reminded me of Campath Week and all the uncertainties we faced at the onset of Zoe’s conditioning. Now here we are almost at discharge with a new immune system intact.

Zoe’s nurse today commented that Zoe seemed to be back to her spunky self. Spunky. A nice description of our daughter. Today she herself has been playing hide and seek with her blanket, wiggling her head back and forth, smiling, and sticking her tongue out. She’s feeling pretty good it seems. She is having some issues with high blood pressure and taking meds for it. Her WBC is holding steady at 3.4 without growth factor and her ANC is 2312. The addition of Prilosec seems to be helping her spit-ups, and she is taking more of her meds orally, something that has to happen before we can be discharged.

So, she is on track and doing well. We are scheduled to leave the hospital on Thursday. It seems almost hard to believe but we are ready for the big day. Very ready!

Day +12: A New Kind of Happiness

Last night Zoe was feeling better, so I decided to camp out with her on her bed for awhile, as long as she could manage. She’s had a hard time being held for long this past week while she’s been in pain, so I wasn’t sure how long it would last.

We flipped around on the TV for a bit and landed on Return of the Jedi, which had just started. Perfect, get them started early I say. Zoe was calm and settled, which was a nice change. These past 3 or 4 days have been rather rough on all of us, but she finally seems to be feeling better.

I had been explaining the movie to her just to have something to talk about, to let her hear my voice, and at one point she rolled her head backward and intentionally looked up at me, and gave me the biggest smile I’ve seen in a long time. I was stunned by how touched I was. It made me realize that I’m not sure my definition of happiness, the one that I’ve held so far in life, really holds up anymore.

This whole experience has been a blur for our family. It was unexpected of course, going from having something like the flu to being in the hospital for months, all normal life put on hold. We’ve lost any real sense of the idea of vacation or weekend, and even the days of the week seem somewhat irrelevant — they are all the same from a hospital room.

And yet as I’ve said before, this has brought us closer together in a way that might have taken much longer, many years, to attain.

It has also, I realized last night, given me a new appreciation for many of my emotions. Maya has been learning about emotions during this time, about the literal definition of being sad, or being happy, or being grumpy, and I think I’ve had to relearn many of those myself for different reasons. Being with a child who is ill and in so much pain or discomfort that she can’t nurse, can’t be held for very long, has given me an appreciation of sadness that I have never had before.

There is a positive side to this though. Seeing Zoe look up and smile at me, after days of discomfort and pain, gave me a feeling of happiness that is different than any I can recall. Stronger, more fulfilling.

There was a feeling of confidence and hope, love and admiration. Confidence and hope that she will make it through this, as is my nature. Love for a child that has had a very different road than most as an infant, but whose personality seems to grow each week and, as I discover it, makes me love her that much more. Admiration that she can smile at all after what she’s been through. I think it might take me a lot of time to smile, were I to endure what she has.

I’m not really sure what comes next for us beyond this. Somehow I doubt we can return to our old lives completely, so drastic has the change been, so much have our eyes been opened to what’s important. Every person, every family, goes through cycles of change in their lives. This is one of ours, thrust upon us. I have a feeling we’ll take this opportunity to make changes that will allow us to embrace our new outlook more fully, though I’m not sure yet what those changes will be.

I know we have a lot of time ahead making sure Zoe is protected long enough to recover and heal, making sure she and Maya have time to become sisters in full, making sure Michelle and I have time to be together for more than an hour at a time again.

And I know that whatever comes next, we’ll have a new appreciation for one another, for the sadness that we can support one another through and for the happiness that we can give to each other. For me it’s a new kind of happiness, one that stems from greater appreciation of exactly how fleeting life can be.

A Place In Between

In the distance the airplanes travel to their destinations, leaving a cloudy trail in their wake. A lovely contrast on the amber horizon. Two dark birds sweep downward from the hospital heights circling, then drifting, then circling again. Needles of the pine trees sway ever so gently as the sun melts into the evening.

In the days since Zoe’s transplant I have found myself in a deep emotional place. A place without words. A place in between. This place is a quiet one, one of waiting and hope and uncertainty. This, the culmination of everything we have been working towards for months now. Has it really been only months?

And so we wait. And we hope. And we wonder what our tomorrows hold, as a new sun rises.