harlequin phenomenon

Day -19: Finishing Up Campath

/ Evan / 7 Comments

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:

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  • WBC: 4.5
  • Hemo: 10.5
  • Platelets: 22
  • Creatinine: 0.2
  • Bilirubin: 0.3
  • AST: 78
  • ALT: 48
  • Lymphocytes: 0

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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.

Afternoon Update:

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.

Day -20: Campath Poster-Baby

/ Evan / 4 Comments

The evening went well, Zoe slept very fitfully through the night. We saw a little bit of rash again this morning just as she was getting her Hydrocortisone pre-med, which may have been coincidence since Hydrocortisone usually treats rashes, not causes them.

We’re told Zoe is looking more and more like a “Poster-baby” for

Lucky the fish

Campath, her reactions so far are the mildest most of the staff have seen. I’ll take it.

Today is expected to go just the same as yesterday, no changes to treatment. If we finish out the week tomorrow without anything else eventful, we can breath a big sigh of relief for our first successful week.

Morning Counts:

  • Creatinine: .2 (down from yesterday, which is good)
  • Bilirubin: .3 (unchanged)
  • AST: 78
  • ALT: 36
  • Sodium: 141
  • WBC: 11.5
  • RBC: 3.38
  • Hemo: 10.2
  • Platelets: 111 (down from the campath, we may hold her hydroyurea if they get too low)
  • Lymphocytes: 0

Very quiet today so far. Our appointed mascot, Lucky the fish, highly approves.

Afternoon Update:

Once again, we made it all the way to the end of the day before seeing any reactions. Zoe is having a bit of a flush this time, in what you might call an unusual pattern. Her entire left side of her face is red, with a line right down the middle where it ends.

A couple of NP’s came in to take a look, and they hadn’t seen a rash quite like this before. But, it doesn’t appear to be bothering Zoe much, she’s a little squirmy but vitals are fine.

This reaction is definitely curious. I promise we didn’t leave her in a tanning bed on one side too long, but that sure is what it looks like.

Still, one of the NP’s said he’d never seen such a happy Campath baby, so I guess all things considered we’re doing ok.

Late update: It’s called Harlequin Phenomenon, and we’re told it’s harmless.