Taking the plunge

What we thought was only going to be another consult visit (at least that's what we thought we were coming in for) ended up being a miscommunication of sorts in that they had scans all ready to go. One of the scans being a MIBG the other a CT.

We knew that Emmah was in need of a work up, but we (foolishly) assumed that we'd consult first and then that would set a series of events into motion. We weren't aware that the appointments were even made/scheduled until around 8pm last night when Julie happened to check her email. We had missed a phone call earlier in the day from the Univ of Chicago, but whom ever it was calling never left a message as to the purpose of the call.

In order for Emmah to have a MIBG scan, she has to take an oral Potassium Iodide solution (which is supposed to help protect the thyroid) one day prior to the scan and then for four days after. They scheduled the MIBG scan based on the assumption that we had this solution... we did not. So it was only a CT today and the MIBG will be in a couple of weeks.

So as the title states, we've taken the plunge, a plunge into a Phase I study.

After much researching...
After agonization... (taking Webster liberties with that one)
After much contemplation...
After interrogation...
After much procrastination...
We even tried ignoring it... (we knew we couldn't and shouldn't but it did feel good even if only for the moment)

We've enrolled in a study.

A Phase I clinical trial with a drug called Fenretinide. It is NOT a chemotherapy drug, so from that aspect it appealed to us. There are side-effects but low (blood) counts isn't among them.

I don't have all the ins and outs of this trial, but I do know that we will be having to stay in the hospital for five days and then we are out for two weeks and then back in for another five days and then back out for two weeks. Each three weeks constitutes as a cycle and she will be in for six cycles as the study dictates. That is unless of course she has adverse side effects and they stop it or we choose (for whatever reason) to stop and withdraw from the study.

I suspect there is wonderment as to the results of the CT...

It was normal.

KEIYTAP