Sometimes ya just gotta go!

This qualifies as a tale from the asylum...

Most of us common folk don't have stellar diets. They either are lacking in something(s) or have other things in abundance. Come to think of it, I don't even know if I could define a "stellar" diet, but that's besides the point.

As old-er folk type people, we know when we've been bad. As for the younger folk... kids... they don't care. They just eat what tastes good... ahhh remember when we used to do that?

What's lacking is the realization as they sit in consternation and contemplation never making the correlation that the lack of fiber might be the cause of their constipation.

So was it to be for Ana.

Poor Ana... not having much success in the poop department. Pooping pellets and grapes and not liking how hard she had to work to pop them out, it was mom to the rescue.

Some time ago, we found fiber bars that most of the kids like... Ana (luckily) is one of them. We also have applesauce plus fiber. In an attempt to get things moving more smoothly again Julie "fibered" her up... added water and let stew/brew and hoped for a movement of Bach proportions.

Oh... we got movement alright... right up the bach... filled up the crack and out the top of her pants and all over her booster seat. I suspect it might have been like something out of the Brady Bunch... the volcano episode, well at least the oozing part.

Ewww...

On a cleaner note... Nick got his braces today and is on his way to making his already great smile greater.

Bag 'em (again) Danno...

Last you all knew, Emmah's one day total for cells harvested was .98 million... a tad shy of 1 million. We were looking to harvest 2 million as that's what's needed for almost all of the NANT studies. They felt that with getting less than a million and the CD34 sinking, they didn't think that two days were going to be enough and so they signed off for a third day.

Okay... so there's your recap.

Tuesday's harvest totaled .98 and so we got going with the Thursday harvest without knowing what the Wednesday harvest brought. Emmah was hooked up to the machine and we (well they) got her up and running.









<----- The apheresis machine
(or Emmah's roomie)


It wasn't long after we got her going when we got word of Wednesday's collection number... well what we actually got was the 2-day total and that was 2.28. Somehow we managed to get the 2 million in two days... which was fantastic. Now Thursday was just bonus time.

Emmah asked me or hinted that she wanted to be run again on Friday (today) and wanted to know if we could. I asked and we were told that the decision would primarily be based on what was collected on Thursday. If it was low... something under .5 million, then the chances of running one more day (Friday) would be slim to none. After all the CD34 was dropping everyday... it's highest (measured) point was Tuesday morning at the 12.3. We needed to see what Thursday's collection total was going to bring.

Meanwhile, after she was done being run on the machine, we were moved to Comer's to a room for her to spend the night since they couldn't send her home with the line in her groin. It also gave them a chance to get Emmah's electrolytes back in balance... her Potassium was low and she needed blood after the first running. After the second running... potassium and platelets. After the third running Potassium, platelets and Magnesium.

So Tuesday night we went over and Wednesday morning we said our good-byes to the staff over there as we were discharged (from Comer) and returned to the cozy confines of the SPA... room #10... only to be rolled over Wednesday night. Basically Wednesday into Thursday was a repeat of Tuesday to Wednesday. I signed discharge papers Wednesday morning... I signed discharge papers Thursday morning and away we went to room #10 again. Got hooked up and running for Thursday's harvest.

Thursday's harvest was done early enough that they could get it to the lab and have a count before it would be time for us to go. So we waited to see if the count would be enough for them to run it one more time... Friday. It came back 1 million... most definitely enough to run one more day. So we ran Tuesday and got .98... Wednesday 1.28 and Thursday 1.0 for a three day total of 3.28 million. It seemed only to make sense to do Friday and see if we could in fact get it to the 4 million mark... enough for two transplants. As of my writing this, I don't have the total collected today.

Oh, and I signed discharge papers today too...

Luckily Emmah didn't need anything replaced today. Her CBC and Chem panel looked good so once they were done running her we were able to get her line pulled and her port de-accessed. We then hightailed it out of there and headed for home. Once I have the total collected for today, I will post it. Now it's let her recover from this... thank goodness it's the weekend... and get her ready for school on Monday. She managed to skate out of the first two days of new school year... Thursday and today... but I think it was for a good reason/cause. Now it's on to radiation.

In other news... Nick is getting braces to correct some rogue teeth in his palate. Me thinks me needs to gets me a corner to call me own... somewhere around Garfield and the Ryan... to panhandle in order to pay for his braces. Every time I go though there... it seems that "business" is good. If I can't make it panhandling, then maybe I can get in on the selling of water bottles out of coolers. I kid about it but it will be worth it (whatever the cost) to get him on the path to getting his teeth in order/corrected... it's long overdue.

Until I get that final total...

KEIYTAP

Bag 'em Danno

If one day is good and two are better... then what is it for three days?

So the amount that is required to be acquired is 2 million. 2 million is the number we need for her to qualify for any of the NANT studies.

So day one came to a close and we found out that they were able to collect .98... so not quite one. We already knew that we were going to be needing a second day of harvest, but I think that everyone was hoping for more like 1.5 for day one. Obviously .98 is a tad shy of 1.5. Her CD34 was 12.3... and this morning it dropped to 9. something. We don't have the count yet for today, but they (they being the "powers that be") are thinking that after today's harvest we will have somewhere in the neighborhood of 1.7. Since the first count was so "low" they've opted to run her for a third day in hopes of acquiring the 2 million.

Today went fairly smoothly once they got the line going, but we won't know what they collected until morning. So it's another night in da joynt.

KEIYTAP

A case of mistaken identity...

Stem cell harvest... from the front line.

So the day started early... we needed to get here by 7:30 in the AM. That meant leaving around 6:30 and that meant getting up (for me) early.

As previously mentioned in another post, they were looking at the CD34 marker and they were once again looking for that marker to be 20. In past attempts that marker never got over 4. We were hopeful that this new therapy would get the job done.

We arrived, they drew labs and changed her port needle. Then it was sit and wait for counts and most specifically the CD34. After waiting for about an hour or so... well, I don't know for certain because I didn't look at the clock, it just felt like about an hour... we had the number. It wasn't 20... it wasn't 15... it wasn't 10... it wasn't 5. It was a whopping 12.3... and that was good enough to get busy with the harvesting.

So it was off to radiology... not too sure why we went to radiology... anyway, we went to radiology to have them put in the apheresis line... in the groin.

Line in and back to the SPA and on to the machine. So day one of harvest is over and we're sitting "recovering" at Comer. With the line in her groin, she's not allowed to walk around and so bathroom trips are out and a bedpan is in. So one of the times it needed to be emptied, Emmah called the nurse. The nurse came in and assisted and began to wonder why we (Emmah) were using a bed pan to go #1. She then begins to talk about going in going in a cup. She then sez that's what the boys use. I'm wondering in my head, what... exactly... does that have to do with Emmah? It would seem that the nurse that came in to assist (not OUR nurse) thought that Emmah was a boy. Then upon realizing her faux pas, she couldn't stop tripping all over her apologies.

We have an early day tomorrow, and I suspect a long one since her hemoglobin dropped today to where she's going to need a transfusion and her platelets dropped by like 50%... 139 to 70. I'm thinking that after tomorrow, we're going to need platelets before being allowed to go home. In any event, we will do what we need to do to get this done and out of here... hopefully we will get a harvest that's loaded with copious amounts of stem cells. We should know what they got today tomorrow morning.

KEIYTAP

So Indian Chief is it...

Lawyer... no way... not me! Too much school, too much money (for school) plus an overall (unfavorable) stereotype associated with being a lawyer.

I can now scratch Doctor off my list too. It is in fact the CD34 marker that they are looking for... the same as the last time.

That leaves Indian Chief...

So the plan (as of Tuesday afternoon) is pretty much what I said in the previous post. Two days of harvest.

We met with the radiation doctor and for all intents and purposes it's going to be pretty much the same deal as the first time around... but less. That is less of an area being radiated... it will still be like 12 visits/treatments.

KEIYTAP

We need backup...

OR stem cell reinforcements.

So here we go again... it will be the same but different.

While the previous pith (pain in the hip) collection was "good", it sadly wasn't enough for Emmah to be on any future trials that would be requiring stem cells. Fortunately for us... we don't need them now and as it stands she wouldn't qualify for any trials right now since she has no measurable disease.

See this post explaining her current situation.

We are at the precipice of the next phase - radiation, but first we need to try and get some more of those peskily elusive stem cells before starting radiation.

At this stage of the game it seems that one can never have enough/too many stem cells on hand. If we had known this when she was harvested the first time that it would become more difficult on down the line to get them, I might have said "hey, let's get some more now then".

Each, any and all subsequent treatments... that is to say chemotherapy or radiation wise... will make it more and more difficult to get stem cells. The more heavily treated someone is, the more difficult it becomes. With that in mind, we've decided to give a new way to harvest a shot. It's worked on some patients that have been more heavily treated than Emmah, so we are hopeful that this will work.

Emmah will be getting a concoction of two stimulation growth factor hormones. One will be GCSF and the other will be GMCSF. One will be IV, the other will be subcutaneous... a "favorite" of Emmah's. We will be going in tomorrow/today (pending upon your gazing of this read) for them to draw labs and check for a marker... and no... it's not a sharpie. I don't know if it's the same marker as the last time, but my guess is it isn't. Then it's on to a consult with radiation.

Emmah will start this concoction on Saturday going through Tuesday. We will go in Tuesday (to check the marker) and if she's ready, she will be admitted. This procedure is done peripherally so it won't be like the last time but more like the first.

All this right before school starts...

KEIYTAP

Psssst...

Check out Rachael's page.

And now for something completely different...

Something not related to Emmah...

HAPPY
BIRTHDAY
NICK!!!!

• When somebody asks how old are you... it now takes more than both hands to respond.
• Two years away from teendom.
• The second half of the name sake of the place with the BIG GULP, SUPER BIG GULP and the SLURPEE.

That's right folks... the BIG 11!