Day -2: Thiotepa Day

First off, I want to briefly say thank you to everyone who replied to my post yesterday, it was nice to hear from so many people with kind thoughst both in comments and via email. Your support is invaluable.

Last day of conditioning! Hard to believe, but we’ve now been through 22 days of pre-conditioning for Zoe’s Stem Cell Transplant. Today is Thiotepa, another suppressing drug that pushes her counts down in advance of the transplant itself. Thiotepa requires some unusual precautions because of the nature of how it is metabolized. Instead of primarily being passed through the digestive tract or urine, Thiotepa is largely secreted through sweat. This means Zoe becomes somewhat toxic for 24 hours after her 4 hour drip of the drug.

We’ll be bathing her every four hours to wash off the skin and be sure that none of the chemical remains on for too long. It will cause chemical burns, and appear similar to a sunburn I’m told. Zoe is not expected to feel particularly bad with this med, but she will require a lot of care to keep clean. We’ll be doing the sponge baths, and we have to remove her protective dressing from her surgery site because anything with abrasive or adhesive qualities can damage the skin while Thiotepa is being processed.

The worst part is that we are not supposed to be in contact with her skin. No kisses, no snuggling up that involves skin contact for 24 hours. For a baby, that’s hard, and it’s hard on us. I catch myself going in for a kiss or touch repeatedly and having to stop. We can hold her if we wear gowns, and we do, but it’s not quite the same.

In addition to the Thiotepa, Zoe has begun Tacrolimus, which is a replacement for cyclosporine with essentially the same uses but is better tolerated. She started Cellcept as well to assist with engraftment and protect against Graft Vs Host disease.

Yesterday Zoe wrapped up her Melphalan. I have to admit, I was fearing much worse than what she went through, but I’m told it is likely to continue to get worse from here on. We’ll be giving her pain meds regularly for the next couple of weeks at least until she grafts, in the meantime there will probably be some pain for her. Zoe had some bouts of discomfort that we treated with Fentanyl, and some flushes. We’re glad to be done with it.

Two more days and then we start down the road to recovery.

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.

Day -4: Melphalan

Today is Zoe’s first of two doses of Melphalan, one of the more harsh medications that are part of her Reduced Intensity Conditioning regimen. She’ll get it today and tomorrow, then Thiotepa on Monday.

We’re told that Melphalan starts to take significant effect about 24 hours after it’s given, so we may not see much reaction today. We keep going into these days expecting the “other shoe” to drop, to see some really harsh reactions, but so far we have not.

Zoe got her Melphalan around noon, and hasn’t had any reactions as ofIV Tower 3:30. She dozed off and woke up very fussy a couple times, however, much more than usual — she rarely cries and she was very upset each time.

I am attributing that to soreness from her surgery yesterday, and we’re going to see about getting some pain medication for the rest of the day. We set up an “as needed” pain prescription before the primary doctor left last night for just that purpose.

It’s a little disconcerting to see Zoe reattached to the complex IV rig again, we were so pleased when she was done with that at her first hospital. This time we’re less hesitant though, less unsure about where we’re going. Zoe is hooked up to get cured, not to “manage” a disease, and somehow that makes a difference.