The Road Map

Last week we were provided with a document sometimes called The Road Map, which lays out the frequency and rough dosage levels for the medications Zoe will be taking. It’s based on recommendations from the HLH-2004 treatment protocol I’ve discussed previously.

For the sake of documenting the process as much as we can manage, here is what we know about Zoe’s drug treatment plan from here on out. Please note this is not exact nor is it intended to be a recommendation of any sort, it’s intended only for context for those who might want to know what to expect in terms of treatment for this disease.

Click to enlarge

As you can see Zoe is to remain on Cyclosporine and Etoposide until either she has successfully had a BMT or until the disease has gone into remission and roughly 1 year has passed, or some combination thereof. We’l be administering her Cyclosporine at home, with outpatient visits to have her Etoposide treatments (administered over the course of 3hrs each week). Her Dexamethasone (nurses here call it Decadron(sp?), probably brand related) will taper off in coming weeks. She’ll receive anti fungal and antibiotic medications where necessary as well.

As of today, all of Zoe’s medications are administered orally with the sole exception of the Etoposide. This is good news for us, it means we’re still on track to leave the hospital the end of this week.

2 thoughts on “The Road Map

  1. Good to hear that you are still on track to go home at the end of th week. Will continue to pray for healing and that Zoe will be at home by Friday! Take care and we love each of you!


  2. Michelle ,We were happy to hear from you on the log!! We have been concerned for you with the problems of mothering your two daighters during a difficult time We are so happy that Zoe is scheduled to go home with you on Friday. I hope that will relieve some of the pressure that’s been on you both. Hug the girls for me. Love to all!! Geneva

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