Zoe has really impressed everyone around here, including her Mom and Dad, with her strength this week. We’re nearly done at this point, she’s half way through the last dose of Campath, and barring any problems it should be her last.
After yesterday’s unusual reaction, we’ve had a few more folks than usual pop in to take a look at her. It’s not everyday they see Harlequin Phenomenon, among her treatment team only her primary physician had ever seen it before as best we can tell. For the record, it is a harmless phenomenon, and it is not the same thing as Harlequin Syndrome, which is an unfortunate condition indeed.
Today’s counts look good:
[spoiler name=”Click to see counts”]
- WBC: 4.5
- Hemo: 10.5
- Platelets: 22
- Creatinine: 0.2
- Bilirubin: 0.3
- AST: 78
- ALT: 48
- Lymphocytes: 0
Because of her platelet count, Zoe will get a transfusion at the end of the day to get her through to Monday. This is not unexpected, the Campath knocks down the platelets along with her Lymphocytes. We’ll be checking in on Sunday to be sure the transfusion does what it needs to.
Next week we’ll be in 3 times for counts, but otherwise it’s a “break” week. Zoe will be on Hydroxyurea to keep her immune system suppressed until the following week when we start Fludarabine and Melphalan, at which point we’ll be admitted in the lead up to the transplant.
It’s been an amazing week. A relief to be starting treatment, sure, but more than that a relief to see Zoe handling everything so well. We still have a lot of anxiety about things, but it’s different now.
Often the anxiety in anticipation of the journey is greater than once the journey has started, and I believe that’s how we’re feeling right now. Glad to have started toward Zoe’s cure, and optimistic that we’ll reach our destination safely.
Without even a whimper, we’re done. Things went so well I’m waiting for something to happen, but at this point there is little left that could. Very proud of Zoe, she’s weathered the week better than we could ever have hoped.
Praying all continues to go as planned. Go Zoe go! You’re gonna do great baby girl.
Happy anniversary Michelle and Evan — it’s inspiring to see how loving and supportive you continue to be of each other even in the face of such trying circumstances. We love you and are so glad to have you all in our lives.
Michele and Klaus and Ava
Well it sounds as if things are right on track for the upcoming procedures and a sucessful outcome and a completely cured little girl. We are all hoping and praying for that outcome. GO ZOE GO!!! With our thoughts and love to all. John & Nannie
Looks like this week has gone really well! Praying that Zoe’s treatment continues as well as this week as gone. Zoe is a real trooper as are her parents! Hope that Maya is doing well. Thank you for keeping us so updated on Zoe’s progress. Take care and we love you!
Now that I’ve laid eyes on her, I concur: she IS the poster child for week one of conditioning. Her vocalizing was a delight to my ears. You’re all always in my heart.
I’m really glad Zoe is doing well I’m so happy for her & you all. May god bless you all .
Praying for Zoe. Our daughter is day+ 304 she had teh harsh chemo.