Today feels like a day to celebrate, a milestone of sorts. Zoe is five months old. She has been alive with her diagnosis longer than she had been living without it.
So much has happened in these three short months. We have bounced around emotionally from shock, horror and despair, to determination and hope. And more importantly we have been able to manage her disease so that we can proceed to the cure.
We are in a hopeful place today. Zoe’s blood pressure has improved greatly. She did very well with her Campath treatment and seems to be doing well on her oral Hydroxyurea this week. We’re crossing our fingers that Zoe’s GFR (kidney function test) result will have improved, as she will be retested tomorrow.
During these three months I have thought a lot about quality of care. I will never forget the conversation I had with the chief resident on the acute care unit of the hospital where Zoe was diagnosed. So many of her tests had come back negative and we were desperate for a diagnosis so treatment could begin. It seemed like Zoe was slipping away from us with each day that passed.
The resident, very concerned about Zoe, told me that he went home at night and cycled the details of Zoe’s case through his head, trying to solve the mystery of her illness. Accordingly, he made numerous consults within the hospital with other staff. Ultimately we learned that it was an ER doc who first made the suggestion that Zoe could have HLH.
So on this special day we look forward to Zoe’s transplant scheduled for June twenty-third. On that day we will celebrate another new beginning.
2 thoughts on “Reflections”
I get frustrated sometimes when people say the health care system is totally broken. These days, when I hear it, I always think of Zoe and what her entire team has done and is doing for her – from your pediatrician who first sent her to the ER all the way to the people doing her GFR today. And, of course, her family advocates :). What a fine, fine team has come together to get her through this transplant!
I share your optimism and hope. The word “plucky” always comes to my mind when I think of Zoe. It’s old-fashioned, but I think it’s right. Mara
I started to read this helpful page when trying to understand the condition on my sister’s 8months baby girl Ema which is waiting for the diagnosys, possibly Hlh.
I would like to hear back good things from Zoe’ parents! If they read this please send me some advice on my email : Nicuoanta@gmail.com Wish God protects us all!