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It’s been a roller coaster summer for us, but we’re feeling pretty confident going into Fall and School season. Zoe had took a few steps back and scared us a bit after a combination of overconfidence and overexposure to sun led to the Very Rashy Beachtrip.

Still, she recovered fairly quickly from that setback, and has since resumed the drawdown of her meds as we continue to work toward weaning her from the big ones. As of now, she continues to take Tacrolimus (and use a Tacrolimus ointment for spot treatments), Prednisolone (nearly done), Hydrocortisone daily, with Septra on the weekends. At least two of the four cause sun sensitivity, which has made for an interesting balance. And, of course, just as we think we’ve got it perfected, Summer is nearly over.

School is a dilemma for us right now. We very much want to get Zoe started, and she’s on track to begin pre-school in a few weeks. We’re going to play it by ear, and thankfully our pre-school has been incredibly patient and gracious with us, saving a spot for she and Maya when needed, and allowing us to step out when necessary during this past year and a half.

Zoe was diagnosed at 2 months, and as such she’s never really had vaccinations that a typical child would have received several times by her age, a year and half. As such she’s going into school essentially relying on the other families to have vaccinated fully to avoid getting sick. It’s a scary thought, and something we’ve worried about quite a bit, but the alternative is to keep her out for another year.

Instead, what we’re going to do is get her started, and then likely keep her out during the height of flu season until she can get her vaccines. She will almost certainly get sick — Maya did when she started school, I suspect most kids do when thrown into the germ pool for the first time — but Zoe’s immune system seems to be getting sturdier. We have to hope she can weather it.

Just us puppies here

Developmentally, she’s a fireball, and we had nothing to worry about. She’s decided she wants to start potty training almost a year earlier than her sister did. I guess that’s what having a big sister will do, she has so much to watch and emulate. Her vocabulary is growing daily as it should, and she’s stringing words together a little bit now, “nigh nigh daddeh”. She is sitting still for stories more and more, and she wants to be shown how to do things, block stacking, sorting. She’s taken to picking anything she finds on the floor and running to the trash can to throw it away now that she has learned to do that. I’m just waiting for my phone to start ringing from there.

Medically, Zoe’s labs have held up so far. She remains at >98% graft, and her ferritin and WBC counts show no indication of a return of HLH. She just needs to get through the GVH rashes without a serious incident, and we may yet make it through this. We’ve gotten fairly adept now at when and how much she can be outside, so she is able to make it to the pool, on hikes, and on car trips without being overexposed if we toe the line properly. It took a long time to get here though, it seems like.

In the end, we feel really good about where Zoe is. We continue to have our scares, but once we get through them things seem relatively OK. She has survived the transplant, survived at least one cold since then, survived a semi-serious series of GVH rashes, and she is still ok. Now, for the big one: School.

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

HLH Journal

Surviving Summer

Day +42: Packing Up