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.

Day -3: Father’s Day

I’m sitting here in the hospital room with the lights out, room lit only by the mid-day Durham sun through the blinds. Zoe is asleep, her mom is off to see our 3 year old, Maya, who is finally getting to come join us in town today. She’s been unable to join us since she had camp this past week, and we had to give her a few days past that to be sure she didn’t acquire some fun new virus from the petri dish that is preschool.

I’ve been trying to watch the World Cup whenever I find a spare moment, but sadly the only channel that it comes in on at the hospital is Univision, the Spanish language channel. As such the only sound here is the drone of the massive A/C above us and drone of vuvuzelas from the TV, with an occasional beep from Zoe’s IV. I have a couple of Father’s Day cards here that I haven’t found time to open yet, since it hasn’t really felt like Father’s Day yet.

Zoe has been doing pretty well so far with her Melphalan. She received her second and final dose this morning, and so far we’ve only seen some passing painful moments, nothing really persistent yet. She does have the first signs of Mucositis at this point. We have been giving her a little medication for pain whenever we see that — Zoe is really a calm and unfussy baby, so when she is actually in pain it’s easy to tell. I suppose we’d all wish we never had to learn how to tell when our baby is in pain, that they might not have to ever endure pain, but that’s not how things turn out.

I’ve been stressed the past few days. I haven’t been able to put a finger on exactly what aspect of all of this is causing it, but it’s there. It’s not the routine of the hospital, the living away from home, the poor quality of sleep or catch-as-catch-can mealtimes — I can manage those. If I had to try and pin point it, I’d say it’s the uncertainty.

I’ve always been an unusually optimistic person. I find myself constantly, compulsively, finding a silver lining in most everything that’s happened so far in life, to myself or to others in conversation with them. In time I’ve come to see it as a talent, one that comes in handy with great regularity in my marriage and as a father to a toddler. I’m sure it has it’s moments of being annoying too, but you’d have to ask my wife about that.

Having a child very sick has been a real challenge to that, the optimistic side of me. I can’t think of a time when I’ve ever been forced to really challenge my perception of the world at this level, such that I might wonder if my optimism is truly unfounded.

It’s not faith, per se, that generates my optimism, but rather an innate sense that things tend to work out for the best in time. It can be naive at times, and I know that, but it has served me well so I choose to embrace the instinct, not reject it. Those times that it turns out later to have been naive do not outweigh the general positivity that it gives me.

So I find myself asking, where is the bright side to this? I do not believe it serves a greater cause to have my child born with a dysfunctional immune system, but I do believe that when people are given opportunities to face hardships, it can change them for the better if they let it.

For my wife and I it’s brought us closer in many ways, despite the moments of stress. Our marriage is young still, but events like this give it depth that might take many more years to attain.

Before we were married, I took time off from work to take a driving trip across country. I had been planning it for a year, since before we began dating, but when the time came to go I invited her to come. We had been dating for two months and I wanted to spend a month with her in a car and a tent. Everyone thought we were crazy.

We made it though, it was one of the best months of my life. When we came back her friends told her if she could stand that she should marry me. They were right. The time in the hospital has only proven again to me that we can weather anything together.

For our toddler, Maya, it has been hard. She has had to be away from her parents much more than we would like, but it has also given her something she never would have had otherwise — a very deep and close relationship to her grandparents, who have taken care of her these past months whenever we cannot. I don’t yet know what she will take away from that later as a young woman, but I feel sure that the experience has been enriching for her.

The time in the hospital has also given Maya an awareness of medicine and doctors that she might not have had until later in life. She has already told us that she will become a doctor. Not wants to, will. I don’t recall what I wanted to be when I was 3, but I can assure you it was probably something much closer to Han Solo than a transplant doctor.

For myself, well, others could probably tell me more than I know myself at this point. I know that I’ve renewed my interest in writing, not just here but in other ways. I know that I am more aware, moment to moment, of my children than I was when we were in our routine. I know much more about what it is to be a father than I ever imagined there was to know, with still so much to learn.

None of this implies that it’s ok that Zoe got sick. It’s not. We’ve spent more time than we should have worrying about what we could have done differently, but unfortunately there just isn’t anything. The worrying is a way of coping. Another, for me, is finding the good that can come of this.

Zoe will get through this. I have my moments of uncertainty, but somehow I know she will. We have more confidence now than we did a month ago or a week ago, even. Seeing the 9 week old baby next door, who is a month past transplant, looking as healthy as any baby should will do that for you.

Our family will get through this too and, I have to believe, we’ll be the better for it.

Reflections

Today feels like a day to celebrate, a milestone of sorts. Zoe is five months old. She has been alive with her diagnosis longer than she had been living without it.

So much has happened in these three short months. We have bounced around emotionally from shock, horror and despair, to determination and hope. And more importantly we have been able to manage her disease so that we can proceed to the cure.

We are in a hopeful place today. Zoe’s blood pressure has improved greatly. She did very well with her Campath treatment and seems to be doing well on her oral Hydroxyurea this week. We’re crossing our fingers that Zoe’s GFR (kidney function test) result will have improved, as she will be retested tomorrow.

During these three months I have thought a lot about quality of care. I will never forget the conversation I had with the chief resident on the acute care unit of the hospital where Zoe was diagnosed. So many of her tests had come back negative and we were desperate for a diagnosis so treatment could begin. It seemed like Zoe was slipping away from us with each day that passed.

The resident, very concerned about Zoe, told me that he went home at night and cycled the details of Zoe’s case through his head, trying to solve the mystery of her illness. Accordingly, he made numerous consults within the hospital with other staff. Ultimately we learned that it was an ER doc who first made the suggestion that Zoe could have HLH.

So on this special day we look forward to Zoe’s transplant scheduled for June twenty-third. On that day we will celebrate another new beginning.