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.

Day +61: Keep on Truckin’

Not much has changed for Zoe, which is exactly what we want. Her counts remain solid, her WBC is holding at 4.2 as of today, though she did have GCSF on Friday. In terms of a trend she seems to be slowly ticking upward, holding on to more and more cells each week.

Her second chimera test blood draw also took place today, so I’ll be on edge until we hear back. They don’t always draw a second chimera test at 60 days, but Michelle and I had already determined to press the doctors to do it anyway — we want to be sure her last test wasn’t a fluke. Which of course it wasn’t, objectively, but at this stage we are still quite prone to worrying that something we can’t see is wrong. Luckily kids who are on the study all get tested again at 60 days anyway for a data point, so it was all part of the plan.

At home we’ve settled in quite nicely. We’re increasingly finding time for work and fun activities during the day, though it tends to be odd hours broken up by Zoe’s med schedule. Zoe has worked her way up to almost 10 ounces per day of breast milk, meaning we may be able to get off the IV nutrition soon. That would take a good hour and a half off of our daily routine, time we’d be grateful to have back.

Maya is doing well, we have a number of activities we’ve worked out to get her out of the apartment and playing with other kids. Keeping up her social life is really important at this age, and we’re lucky to have a number of friends here and back a home a short drive away willing to meet up for play dates.

We did find out that Maya is not going to be able to return to school this year, it’s just too dangerous for Zoe at this point should something hitch a ride home with Maya and get us sick. Her school is a really good one, but it’s just not possible to ensure she won’t bring something home and the doctors said no to her return this year.

Once Zoe is a little further along, likely next spring, Maya can start up again. Thankfully the girls are both very young, she won’t miss as much as she would even a year or two from now.

Day +??

I was walking through the children’s clinic wing of the hospital a couple days ago with Maya on the way to drop off labs, and the thought occurred to me: I don’t know what day + we are anymore. I worked it out, and it appears we are at Day +55 now. 45 more days ’til +100.

What a difference being outside of the hospital has made. We’ve transitioned from micro-management of Zoe’s care, stress and hospital life, to trying to become a whole family again. Fewer worries about which Day+ we are, more worries about making sure Zoe and Maya both have their share of our time. The scares are almost gone, replaced by calmer fretting about Maya having a bad dream, or Zoe not getting enough time on her belly with her lines in the way.

They call it the “new normal”. Finding our routines, our calm, yet still managing the care of a child who needs just a little bit more. Zoe still needs a great deal of care, and will continue to for some time, but we have to work it into our lives in such a way that we can provide normalcy for ourselves and the girls.

Early on in our inpatient stay at Duke, during a visit with Dr. P, Zoe’s primary doctor, the subject of Zoe exiting all of this as a “normal” little girl came up. We were worried, with good reason, that she might not escape this disease without major problems — neurological, developmental, or even death are reasonable possibilities. At the time even the thought of returning to normal seemed too much to ask, even.

Dr. P made a point of saying that, after we made it through all of this, there would come a time where we would have to start treating Zoe as one of our kids, not as a patient. It seems strange to say it, but it’s true — it’s hard not to see everything through the lens of her disease at this point. He explained that it is common for parents to struggle with enforcing rules, establishing fairness among siblings, and encouraging the kids to bump and tumble and, well, grow up.

One day we’ll have to transition out of emergency mode, and into our “new normal”. That’s what this past week has felt like, that we’ve begun that journey. We have worked out the med schedule and we’re maintaining Zoe’s care, but we’re also doing some work here and there, and taking time to do fun things again.

Michelle and Maya made it to the beach for a day trip this past weekend, and Zoe and I stayed here in town and played and watched a series of bad comic book movies on FX. That sort of Sunday would have seemed inconceivable a short time ago. I had been determined to see that Maya got to the beach this summer, but it was looking unlikely there for awhile. I’m thrilled we pulled it off though, Maya had an absolute blast.

On the medical front, we have a couple more weeks of TPN while we transition Zoe back to breast milk. She lost her latch in the transplant, she simply appears to have forgotten how, and so far none of the therapeutic suggestions have made much difference. In the past few days we’ve started giving her a sippy cup, and that has gone really well. She’s a messy eater at the moment, but hey give a baby a break, right?

Her counts have been stable, and her platelets are into the normal range on her own. Dr. P made the joke yesterday that she could start donating platelets now. We’re thinking we’ll hold off on that, but he’ll be here all week folks!

WBC counts are hanging around in the 2’s and 3’s, and Zoe is getting her “G” (GCSF or cell growth medication) about once a week now. The feeling is that she will begin to produce her own WBC any time in sufficient abundance not to need it, but whenever the count goes below 3 she gets a dose. Hemoglobin, minerals, everything else are looking great. The only thing she has needed since discharge continues to be the GCSF.


Day +47: Outpatient Daze

Note: A bit of a cute picture round-up today, I had a few more inpatient pictures to get up before we move on.

Where to begin? So much has happened the past few days it seems like. It feels very similar to our first experience of leaving the hospital to care for Zoe for obvious reasons, however things are much more complicated this time around. We’re managing her IV pumps, oral meds, blood draws and cap/dressing changes now.

Hats handmade and given to the kids, most of whom lose their hair

Our first night out was a whirlwind. We left the hospital, headed to our apartment a short distance away, and began unpacking all of our things. We were scheduled for an outpatient nurse to come check on us and supervise our first night’s medical routines, but she arrived 4 hours earlier than we had been expecting, almost immediately after we arrived home. Add to it that we were exhausted and she was, well, a bit of a Drill Sergeant, and the evening was bumpier than it could have been.

We had just been lying down for a nap, Zoe was asleep, Maya was asleep, and Michelle and I wanted nothing more than to sleep — when the knock came. Grizzly, our dog, was still here at that point, and he got up to see who was there. Before I could get the door fully open, I heard, “is that a dog I hear?!”. Uh oh.

“Yes, but he’s friendly,” I said. “He’s going to have to go away,” she replies. So I shut the door, shuffle Grizzly off to a bedroom and return. No big deal.

We gather into the (only) central room to get acquainted. She asks us where our supplies are, and we explain that we haven’t had a chance to get to the store to buy a storage chest, we were expecting her later, so they’re still boxed up. This is met with what I can only describe as disdain. Clearly we have failed already.

We’re told that they would never schedule a visit as late as we’d been expecting, which is probably true. Unfortunately it doesn’t change what we were told, and not knowing better we’re now firmly confused as to where we should be.

We start to lay out our supplies on the table to make sure we have everything, when suddenly Maya comes charging in from the other room “flying” (she’s a big Tinkerbell fan) in her fairy costume, and bumps something that was left on a chair onto the floor.

“You’re going to have to control her! Do you have any Grandparents?! Can you call someone?”

Were I quicker with the wit, I would have explained that we keep them in the pantry nearby for just such emergencies, which seemed to be the expectation. Instead I replied that, yes, we do have my parents nearby and yes, I can call them. God help us if we hadn’t had someone nearby on call, who knows what might have come of our toddler.

Our gear all laid out, we begin to prep. It’s painful, and bumpy, and even though we have had training with demonstration gear we haven’t actually drawn the medicine before, so it takes a little learning. Each mistake is met with a look of disapproval as, though she sees us making it, she allows it to continue. In one case she pointed to a small puddle of medicine on the table mistakenly over-primed from the tubing, glanced at Michelle, and made a remark to the effect of, “now you know”. I am glad there were no sharp objects close by at the point, I fear we would have been needing a new nurse (I kid!).

By the end of the approximately 3 hour visit, we have prepped the IV nutrition and lipids, injected vitamins into them, started 3 timed medications through Zoe’s lines, flushed the lines repeatedly with saline consuming roughly 30 alcohol wipe packets, and given her her two direct slow-injection medicines. I would estimate we also shortened our lives by a month, give or take, just based on the stress. But who’s counting.

Zoe with her primary nurse.

Thankfully Zoe and Maya slept well that first night, and our two subsequent visits have been performed by patient, sane nursing staff who helped us get comfortable with the process of caring for a child fresh out of the hospital. Grizzly has not been “sent to live on a farm”, but has been packed off just the same to our actual home with his Grandad, who is the one who has been doting on him the most these past months anyway. I was sad to see him go, but he is much happier with a yard and his familiar sleeping spots.

We made it through the weekend, veering from one crisis to the next. We would begin a treatment (nervously, fearing any moment we’d cross a wire and blow up our baby) then realize we needed to do something else immediately after and swerve to that. Each night we collapsed on the couch, exhausted, nevertheless happy to be together once again, stressful as it was.

Zoe's new onesie, compliments of her primary nurse.

Each day has gotten better and we’re slowly creating a new schedule of duties to manage things. The important thing is that Zoe is doing great and Maya is happy to have us both back again. Soon we’ll be old pro’s at these new things, and the stress will dissipate.

Zoe’s labs have been good, she has not yet needed cell growth factor again (GCSF), nor has she needed platelets, blood products, or minerals. It’s astounding, we would absolutely have expected her to need them these first few days. She has also begun to drink her milk again very happily — she seems just as thrilled to be eating as we are to see it.

Day +42: Packing Up

It’s hard to believe, but we expect to be leaving the hospital tomorrow. It’s been a very long and painful trip so far, but we hope that the hard part — survival and cure — is done. Now we have to keep Zoe healthy, stave off GVHD and infections, and see her through to a new beginning, when she’ll be healthy enough to venture out into the world confident that she has a strong immune system.

We will be staying in Durham to be close to Duke for the next few months, give or take. It’s necessary to be within 10 minutes of the treating hospital in case of rashes or other signs of a problem. Once we have reached Day +100, we will be transferred to Wake Forest for ongoing care. Zoe will be seen daily for a couple of months, then weekly, and eventually monthly. After a year or so we’ll be on a yearly schedule of check-ins with her transplant doctors, essentially for life. She should be completely out of danger in a couple of years, but because she is part of a study we will be trying to keep in touch long-term so that the doctors have any data they may need to help other kids.

Zoe is doing well. She is feeling good, very energetic and doesn’t want to sleep very much at all. When she does finally give in, she sleeps soundly through the night. Her WBC count has been good, it dropped a little below 3.0 Monday night so she received a dose of GCSF to bring it back up. No major pain this time, we’ve learned how to navigate that a little more effectively.

The physical therapist came by for a final inpatient visit, and she was really enthusiastic about Zoe’s progress. Granted they are enthusiastic about everything, but she pointed out a few areas where Zoe has continued to improve. Her sitting is much better, she’s learning to catch herself to avoid tipping over, and she’s getting very adept with her fingers, holding and turning toys to examine all sides before giving them a nibble.

It was a relief to hear that Zoe is not “plateauing” in any areas — ie she continues to develop at her own pace, without any stagnation that might point to a long term problem. I have a feeling that once we’re out and she can be around her sister, who she adores already and is extremely active, she will do just fine.

I wrote awhile back about some of the chance encounters we’ve had along the way, in particular with a man on staff at Duke named Mikey. I had an opportunity to speak to him a greater length recently, and he gave me a copy of the poem he recited for Zoe one day. We found it really touching, and Zoe responded so well, calming down during a really rough patch, that I am pleased he was willing to let us have a copy to keep.

He has an interesting story. Raised in West Virginia by two teachers, he spent time in California during the 50’s and 60’s, then Paris, working as a choreographer for most of his life. He ended up in Durham working for Duke as a housekeeper later in life, and when asked why he’s still here he says that he feels God has a plan for him, and that he’s here for a reason.

Mikey volunteered to take on 5200, the transplant ward, after finding that much of the staff didn’t like working here due to the strenuous cleaning requirements. I’ve only seen two people up here doing the cleaning on this wing, both older than the rest of the staff and very dedicated.

The poem was originally written on a whim in response to a child named Daniel on 5200 who rarely spoke, but who Mikey wanted to connect to. He went in one day and recited it, and they were able to make a connection, speaking regularly after that whenever Mikey passed through their room. Since then he has occasionally recited it for kids who seem interested or who he through might appreciate it. We’re glad he’s here. A kind caring voice can mean a lot during hard times.

Under God’s Chestnut Tree

Hello my child, you’re sitting under my chestnut tree,
looking back and up at me.
My child, you’re under my chestnut tree,
the birds and bees fly around thee.
My child, under my chestnut tree, you gaze up
at the stars which look back at thee.
Yes my child, under my chestnut tree,
you look to your friends to play with thee.
Oh my child under my chestnut tree,
your parents began to run and play after thee.
And now my child, under my chestnut tree,
the eagle flies high above thee.
But do you know my child, who sits under my chestnut tree?
God looks down and smiles on thee.
And yes my child, under my chestnut tree,
God has chosen you, for don’t you know, you are he?
— Michael Hairleace-Harris