Monday, June 15, 2009

Beating ROHHADNET....Can It Be Done?

That is what we're hoping for.

Last Thursday, yes it has taken me a few days to get the nerve to write it down, we received the phone call from Haven's Oncologist. We are approved and ready to begin.'re starting immediately.

This whole thing is extremely terrifying and has us mindless. I believe Kris started calling family on Sunday - I only sent out emails. I haven't been able to call about it yet.

Spoke with Gwenn, Bone Marrow Coordinator, as she coordinates all of the appointments for this therapy. Here is what we have so far:
  • Meet with surgeon on Wednesday to discuss the surgery of removing the Cathoport and putting the Hickman line in.
  • Oncology lab work on Wednesday
  • Cardiology for Echo and EKG on Wednesday

  • Oncology on Friday at 7:30am for lab work
  • CT Scan on Friday of the sinuses
  • Oncology on Friday at 1pm to sign all consent forms

Gwen will email me when the following are scheduled:

  • MRI of abdomen
  • Pulmonary Function Test

Endocrine has requested another Cortisol test be done before surgery. This will be done at 8am on Friday this week. It has to be at 8am for the correct results.

We will find out the date of the surgery on Wednesday. Once surgery is complete Haven will begin chemotherapy immediately.

Chemotherapy will begin before the end of this month. This gives us 2 weeks to figure everything out and have multiple doctor appointments and surgery again.

By July 1st Haven will be in isolation (if all appointments go as planned). She will remain in isolation for a few months.

1 comment:

  1. Keeping Haven and your family in our prayers