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 TreeHello 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
6 thoughts on “Day +42: Packing Up”
Evan, This is wonderful news to be getting out of the Hospital. We know it’s been a long and extremly hard journey, but maybe now it’s almost over. We hope that getting back to normal is in the very near future. That is a very sweet and poiniont poem and very to the point, we love it.
Love to all, Nannie and John
This is fantastic news!! My thoughts and prayers are with Zoe and your entire family every day!
Michelle, Tippi and I will be lunching tomorrow at the Federal. We will toast to all of you and especially to your wondrous Zoe! Love, Mara
So happy to hear the day is finally here!!
So many emotions over the last six months hopefully things will begin to be somewhat normal (normal as they can be). At least the four of you will be in one place together.
I am sure Maya will be happy to have her mommy and daddy together in one place!
Take care! We will be praying for you each and every day!!
We are so happy for all of you!!!
Each step is getting you closer to ‘home’.
We wish you continued strength but mostly good health and happiness.
Michelle and Evan — I am an old friend of Charles Winecoff’s, and am making something special for Maya. It is being commissioned by Charles and Elizabeth. I live in W-S, not more than 2 miles from your home.
While doing this project, I have been following your site online. It makes me both laugh and cry, as well as think and thank God.
I need a good picture of Maya ( a snapshot by way of the computer ) will do for a part of this project, so when your life settles to a bit closer to normal, perhaps you can send me one.
I think of all of you often and look forward to meeting you when you are at last at home, here in W-S.
God bless you all – and especially little Zoe. Linda