Let's see if anyone is paying attention...

Okay class... what does NED mean?

Anyone... ? Anyone... ?

Sure... I know... you're thinking it spells Ned... like Ned Flanders.

I'm talking about the acronym N E D... or more specifically in our case N E (d) D.

N E D stands for No Evidence of Disease... Emmah is (and I don't think that this is an official label) N E d D standing for No Evidence of distinguishing/discernible Disease.

They were able to compare the MIBG from March with this one and they felt that what they were seeing this time around compared to what was seen from March were too different, or different enough, and that the "hot spots" that were on the March scan were not on this one. It's not a totally clean NED, but they can't say for certain that what's being seen now is actual disease either especially since the most recent CT was normal and showed no abnormal growths.

No matter how you spell it, she doesn't have any measurable disease and since that is the case, she is precluded from the Fenretinide study. So it's radiation (no chemo) watch closely and wait... again.

Don't stop Keeping Emmah In Your Thoughts And Prayers just yet... we are still in need of them as we are far from being out of the woods.

This is a really good (second) first step though.

KEIYTAP

Never assume...

...that things will go smoothly if left unattended.

Alright... tomorrow is Thursday and let's see here, I called on Monday about getting the MIBG scan sent over and was told that is was going to be sent overnight. So by deduction going overnight starting on a Monday it would stand to reason that said scan/CD/documentation should be there Tuesday. That does constitute overnight... right???

Why then is the U of C calling me today (this afternoon) to get the number to call Hope to get a tracking number to see where it is and if it's arrived?

Here is going on Thursday and we don't know any more than we did last Friday.

What the bleepin' hell?!?

Let's hope it's worth the wait...

KEIYTAP

Things that make you go... !#*&!@#!

I called Christ/Hope to see about getting the scan sent over and had inquired about a courier service so I didn't have to drive to get it and then drive to deliver and pay to park to deliver it. I was told that she could get the scan CD ready, but THEY didn't have a courier but U of C did and I would have to call over there to make arrangements to have it picked up.

Okay...

Call U of C and was told that THEY don't have a courier either and can't they (Christ/Hope) just send it FedEx? Here's the number of the person with whom I spoke... I'm stepping out of this as the less people involved the better.

In the mean time, I was wondering then what happened to the purportedly sent scan... the one earlier in the year. I decided to call Christ/Hope back. I asked the woman at Christ/Hope if there is any indication that the MIBG scan from March... it was March 4th and not in February - just a side note... and she said that she didn't see any kind of notation showing that it was sent. This is the same woman that (back in March) told me... in person... that there was a courier and that it would be sent over via courier.

This is also the same woman that told me today... just hours ago... that they don't have a courier. Huh???

The MIBG scan will get there (U of Chicago) tomorrow via FedEx... so that problem "solved".

Just awaiting what's next.

KEIYTAP

And the answer is...

Undetermined...

Kind of feel like Carnac the Magnificent

Wait a minute, what was the question?

Oh yeah... the question... Question - then answer.

Q. What is the result of Emmah's MIBG scan(s)?

A. Envelope please... uh... ummm... undetermined.

Say what?

Seems that the problem isn't with the scans themselves, they were clear and all that, it has something to do with a spot behind the bladder and the interpretation of said spot. That and how does this scan compare to the most recent previous one... the one from February?

Okay, so let's just have a look... oops, seems that we don't have the last MIBG scan results.

Somehow when we asked Hope to get all the scans/reports up to the point of starting Emmah's care with Dr. Cohn to Dr. Cohn, they didn't send the February MIBG.

Ahhhh... good thunder storm going on... lots of lightning... good for the grass because lightning releases nitrogen into the air and nitrogen make plants/grass green. Nature's fertilizer.

Sorry... back to Emmah.

Okay, so it seems that U of C doesn't have the most recent (previous) MIBG scan to compare to this one. They need it since this scan is showing a small uptake behind the bladder and they want to see if it's in the same spot as the little bit of uptake from the last one. Although... uptake in the colon (which sits behind the bladder) is a known area of uptake. The normal spots of uptake are the salivary glands, the liver, bladder, spleen, and it also can be seen in the colon. So they want to compare the two most recent MIBGs to see what's what.

The thing that Julie and I find odd is how could Dr. Cohn make a recommended treatment plan without first seeing the February MIBG? In any event, they say they don't have it and so we need to get it to them. Once that happens and they can compare the two, then we will hopefully have a better answer and a more solid plan going forward. Of course upon hearing the answer, that may just probably ummm... open up just a "few" more questions.

Other than that little unknown... Dr. Cohn said the scan looked fantastic.

SO... the real answer will have to wait for another day.

... or four or five.

KEIYTAP

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