Day +1: The Honeymoon

Zoe is doing well so far, much improved from early in the week. The transplant hasn’t changed much outwardly so far, we’re not seeing any changes in behavior, no adverse reactions, and as she recovers from the chemotherapy her mood has improved considerably.

We understand that typically kids have a honeymoon of sorts from the pain and discomfort of this process right around the time of transplant. They have a window where they are recovering from chemo and aren’t receiving more, but the transplanted cells have not begun to grow yet so the pain associated with that hasn’t kicked in. That’s where we are right now.

Zoe has been chipper and playful, and we continue to be amazed at how well she is getting through this so far. We’ll be waiting for word back on her cells each day, making sure she stays healthy and clear of infections, and trying to stay sane as we rotate in and out of the hospital to be sure Maya is getting time with both Michelle and I every day.

Each day we look over the comments you leave here and the emails, and it helps us feel connected during a time when we’re forcibly isolated. Thank you everyone for your support, it’s been invaluable.


Sorry about the baby talk, it’s easy to get carried away.  🙂

Day 0: Transplant Day

Last night I spent a lot of time talking to Maya about today, trying to prepare her. We knew that it would be necessary for her to wear a mask during her time here, and I wasn’t sure how that would go. So before bedtime, I took out the masks and gave her one, then put one on myself. I helped her get hers on, and she really didn’t fuss about it at all. She seemed to understand something was going on, and she was very attentive.

I explained to her that tomorrow we were going to go to visit baby Zoe for her new birthday, and she would be getting a new immune system. I told her that when people get colds or other things that make them sick, their immune system helps them get better, but that Zoe’s immune system couldn’t help her get better and so she needed a new one. Maya took all of that in very intently, and then asked if she could keep the mask to sleep with. We finished up our stories and said goodnight.

Maya during Zoe's Transplant

It always takes a little time to get her down to sleep, especially since we’re away from home. I went back in to check on her a little later, and she had all of her stuffed animals lined up on the bed, and she was making all of their boo boos better, one by one.

Earlier in the evening I had shown her how to kiss her finger, then touch the place where an animal had a boo boo, and told her it would feel better now, but I hadn’t given it much thought at the time. Coming into her room and finding her ministering to all of her toys was really touching. She had her mask on and was kissing her finger, then touching each one.

We all headed in to the hospital mid-morning, transplant was expected to be around 11:30-12. When we arrived, Zoe was all dressed up in her special dress ready for transplant day. The previous evening had gone reasonably well, she’s been improving slowly since our really bad days yesterday and Monday. A little bit of spitting up, but she was willing to nurse, and that seemed to make her feel much better.

Cord Blood Unit

Zoe’s transplant started at 12:30, and ran until around 1:15. Her procedure is called a Hematopoietic Stem Cell Transplant, or HSCT. She received a unit of stem cells obtained from donated umbilical cord blood from the bank here at Duke University Hospital. The HLA typing for her unit was a 5/6 match, 6/6 being a perfect match, 4/6 or 5/6 being typical for transplants. She also received pre-meds of Tylenol and Benadryl to help manage any fever or allergic reactions.

They say that transplants are really uneventful most of the time, and thankfully that was our experience as well. It took about 45 minutes, and we all sat around talking, taking turns holding Zoe’s hand, and playing fun songs. Zoe’s blood pressure went up as expected, but she didn’t get any fevers or allergic reactions, which can happen.

The transplant itself is more of a transfusion in terms of what people usually think of as a transplant. Most of us think of a kidney or other organ and an operating room when we think transplant, but Zoe received hers in her hospital bed where we’ve been this past week.

Zoe during transplant

Her mood was pretty good, all things considered. Not a lot of smiles, but she remained awake the whole time despite the Benadryl, and wasn’t fussy or upset. We understand from the team here that kids often have a bit of a transplant honeymoon for a few days where they feel ok, then they may have some pains or fevers, and it can go up and down a bit until she has recovered.


From here on we’ll be watching cell counts every day. We expect she will remain at “<0.1” for awhile, but we want to see white cells grow. You’ll probably hear “Grow cells grow!” a lot from us.

As you probably noticed, we’ve been counting down the days from -23 to today, Day 0. Tomorrow is Day 1, and we’ll count up from here. Our goal is to see her cells graft and grow, counts to begin going back up, and then around Day 30 we’ll do a test to see what percentage of her cells are hers and what percent are donor cells. Assuming everything is going well, we’ll be looking toward Day 100 at that point, when we can return home.

It’s a long process. First Zoe’s life had to be saved from the active HLH, which thankfully happened quickly. Now she has had her conditioning and transplant. Next, her new immune system has to grow and we have to keep her healthy. After approximately a year, one year from today, she should be healthy enough to resume a normal life. Thankfully she is young and won’t miss the malls or crowded restaurants or school that she can’t go to but would miss if she were older.

For our family, it’s another step along the way toward being whole again.


Day -1

Well, we made it through Thiotepa. Michelle deserves most of the credit, she had it rough last night with baths and gowns and Zoe refusing to eat out of the bottle. We contemplated having me stay over to help, but technically we’re only supposed to do one person in the room, and with Maya in town and expecting us we thought it better to stick to the plan. Still, kudos to her for getting through what had to be a rough night.

Zoe had her last bath late morning. The baths involve wiping down her skin really thoroughly with damp gauze pads to remove traces of the chemical being exuded through her skin. I didn’t realize this yesterday when I mentioned it, but apparently leaving it on or allowing it to accumulate can cause 3rd degree burns. As such we’re very careful to clean her armpits and little baby wrinkles where moisture accumulates.

Sleeping it off

But, it’s done now. This was anticipated to be the worst day of conditioning, and it was. Zoe is a trooper though. She didn’t like the wipe-downs one bit, but as soon as they were done she would calm down and resume her normal chipper demeanor. We’re very lucky.

Today we simply continue her maintenance meds and get ready for tomorrow, Day 0, transplant day. We’re bringing Maya and my parents in to cheer her on while she gets her transplant since they’re local, so that should be a nice occasion.

A lot of nerves here, but a lot of hope too. We are tense because it’s all come down to these next couple of weeks. We’re ready, but scared for Zoe. It’s a big deal, getting a new immune system. The vast majority of people go their whole lives having no procedures so major as this, and here she is plugging along at 5 months old for it. I find it pretty amazing.

Late update:

Well, as the day wore on things became a little more tense. Zoe’s pain got worse through a combination of the mucositis (from the melphalan), the soreness from blisters on her bum from Thiotepa, and probably some lingering aches from surgery on Friday. In general she had a pretty rough afternoon.

We did get a PCA device set up for her, she’s part of a study that allows parents to administer small amounts of pain medication (dosage regulated and on a timer) when they see their child needs it rather than have to wait for a nurse. It’s basically an IV that can’t be adjusted, but which will dispense a small amount of medicine when a button is pressed to stave off pain. It works wonders.

From here on until she recovers it will be a little bumpier than it has been. We made it through most of her conditioning with little impact to her in terms of discomfort, but now things start in earnest.

[spoiler name=”Day -1 Counts, for the record”]

  • WBC: 0.4 (will likely be “<0.1” by transplant time)
  • Hemoglobin: 10.6
  • RBC: 3.67
  • Platelets: 56 (she’ll get a transfusion tonight more than likely)
  • Creatinine: 0.2 (good)
  • Bilirubin: 0.5 (good)
  • Sodium: 140 (no longer an issue)
  • Lymphocytes: 4% (The way this was explained to me is, she may have a few going into transplant but they are neutralized and cannot multiply. They will slowly be knocked out in the next few days and will not be an issue.)


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.