Tellin' it like it is part deux...

So today we went to have a conference with the new principal at (what is now Jake and Rachael's school... now that Nick has moved on) to discuss and see what his plans were and in what direction his vision was going for the school. Over the years we've been less than satisfied with the previous principal's performance and how the school's practiced philosophy deviated from what its intended philosophy was supposed to be.

I'd like to add that after talking with him (the new principal) Julie and I feel fairly confident that he was the right man for the job and he will take it in the direction the school was intended when it was made the first IE school in the country.

Anyway... at one point as we were getting ready to leave... the kids were milling around the office and something came up with regards to something the old principal used to discipline. The way she disciplined was way off base from what should have been done. Seems that she put an "X" on the floor and students had to stand on the "X". Conversation came about and Julie asked Jake about a friend of his who had to stand on the "X". Jake's comment was, "yeah... he used to throw tantrums... just like you do mom."

On another note... Emmah goes in for the MIBG scan tomorrow and a follow up MIBG on Friday.

Think... N E D... N E D... N E D!

Tellin' it like it is...

From the "out of the mouths of babes" file.

Lyndsey was rambling on (as she often does) talking about everything and nothing all at once. Amongst her rambling this morning she announced to me that she was 40 pounds. She then went on to add, "Dad, if you got on the scale, you'd use all the numbers."

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

Update(s)...

My apologies to the faithful few that have been checking in to see what (if anything) I've written about.

... lately not much of anything.

The 22nd of June marked the 6th year of my dad's passing.

The 30th of June marked the "Will you still need me, will you still feed me... ?" year of my mom's birth. (For those unsure exactly how old that is... type that line into your search engine.)

Mary Mary Quite Contrary... oh how our garden(s) grow. Our home "garden" is growing fine and (according to Dave our befriended farmer) so are our "crops". We are planning on taking a spin on out to see them tomorrow AND catch a fireworks show out there from his farm. Skydive Chicago is right by him (his property and their property butt up to each other... or very close to it) and according to Dave, they (Skydive Chicago) put on one heck of a show. When we were out to plant, he invited us to watch the show with him and his family. So the plan is to do that... unless it's raining... in which case we'd stay home.

And last, but not least, Emmah

She's done with chemo... for now. We got a call and were told that there was an opening for a Phase I trial did we want to enroll? Neither Julie nor myself are exactly chomping at the bit to get her on a trial especially since we don't know where Emmah is at this point. The last set of scans that were taken were back in February. She needs to be worked up.

It's no picnic trying to sort out all the trials because there are all these stipulations and qualifications... understandably so since these are studies and you need that to control the study... but at the same time, we as parents want what's going to be best for Emmah. The most bang for the buck. It's not as straight forward as well yes... or no not this one. We have to consider things like toxicity, quality of life, efficacy (and in some ways most of all) will she not be able to participate in another (potentially more promising) study because she's precluded since she had drug "A" in study "A" and to be able to participate in study "H" you can't have had drug "A".

It's dizzying...

Overall... Emmah is doing well though mental fatigue is taking it's toll. (on all of us) Her hair is sprouting again... that's always encouraging and uplifting. Not that hair is all that, but being an 8th grade girl... having hair is a lot.

Happy 4th y'all!

KEIYTAP