The pain marches on

and on and on and on... like the energizer bunny.

So as not to leave the left kidney feeling left out, the right kidney decided having hydronephrosis would be cool too. That's the bad news. The good news is that according to Dr. Clardy (the associate professor of pediatrics section chief, pediatric nephrology coordinator, inpatient pediatrics guy) her kidney function remains perfect as do the kidneys.

We might finally be zeroing in on getting a grip on her pain. Will we be home for the "celebration" of the new year? Not looking like it, but we will see what tomorrow brings.

We met with Dr. Cohn to discuss things and ask some more questions. One of the things she said is that we should consider getting on trials and not wait for "the one" we want to open up.

Ironically Julie talked with a doctor earlier in the morning and upon conclusion of that conversation we've decided on a clinical trial to put Emmah on. It is at MD Anderson in Houston. We just need to make sure that she qualifies. It is a tyrosine kinase inhibitor, they have a similar one here, but at this time she doesn't quite qualify and we are at the point that we feel like we can't sit around contemplating and cogitating any longer as to what to do. So we will be setting things in motion and heading on out to Houston possibly... provided that she qualifies and after working out the logistics.

KEIYTAP

Here's to hoping

Here we are on the cusp of a new year... what I'd really like is to be on the cusp of a new era... an era that I don't have to face the cancer that has been so prevalent these past three years. An era where I can focus totally on the kids and Julie and be the dad/husband they need and deserve. An era where there's no need to be looking over my shoulder to see if the city is still standing there tapping their foot and glaring at me. An era that brings some semblance of real normalcy and not what we've come to know as normal. An era that brings peace of mind and comfort knowing that everything will be okay.

With every changing of the year, I become melancholy and a feeling of pensiveness washes over me even as I try to remain optimistic and hopeful that the new year will bring some good change our way. It's just so damn hard when the only things that seems to change for us is the date it's happening. 2006, 2007, 2008, 2009... it's all the same. I will again hope that the changing of the year will bring with it some good luck and good news for a change...

Here's to hoping...

I know that we do have things to be thankful for and we are thankful for them, it's just they are overshadowed by this cancer battle. I'm nearing the end of my rope... though a friend once said that "it's when you're at the end of your rope that you swing the farthest". We are just so tired... and tired in every sense of the word. I just want the intangible... A permanently healthy Emmah... I mean I want everyone healthy... aw, you know what I mean.

We are yet again in the hospital after Emmah had a flare up Monday night that we couldn't manage with the pain meds we had at home. So into the ER it was. They managed to get her comfortable with her pain going from 8-9-10 to a 4-5-6... so we (they) were able to cut it in half. We were given the option to stay or go, but Emmah felt more comfortable staying... so here we are yet again.

Hoping that we can get home for the New Year... but that remains to be seen. Please pray for Emmah and focus on Emmah. There's no need to pray for the rest of us because if Emmah is healthy and good, we will, by default, be good too.

KEIYTAP

Not enough margin

That's what we were told by Dr. LaQuaglia. So it's a no go on the surgery... at least for now. Should we be able to shrink things, then we can reevaluate. For now it's going to be a little more chemo :( and hope for a trial to open up? Most of the things that we've looked at/into work best when there's minimal disease. Emmah doesn't exactly have a heavy disease burden at this particular time, though what she does have is still causing her discomfort. She had a flare up this morning reminiscent of that Monday morning in Wisconsin. So she ramped up on her pain meds and as of my writing this, she's doing better. Hopefully it was an isolated incident and not a precursor of things to come.

I've talked with her and we're going to mix it up a bit and try a different chemo mix for the next round... something she's had before. Gotta keep those damn cancer cells on their toes.

KEIYTAP

Another day, another visit

Emmah... you're platelets are 8... come'on down.

Emmah's counts are still on the down... perhaps bordering on leveling off at the low point. Things should start going up from here, but who knows when that will be. We already have an appointment to go in on Friday as I suspect that the platelets (along with her RBC) will be down... down enough to be in the transfusionable range, but only Thursday's blood draw will tell.

She's still experiencing pain, and that has us concerned as to what the cause is. Since the retention that was a problem about a couple of weeks ago isn't/shouldn't be a factor, then it can only be tumor impinging on something in there.

Right now, we are waiting to hear back from New York to see if the doctor that performed her first resection surgery is willing to have (and no pun intended) another stab at it. Hopefully we should know something this week.

Until the next posting...

KEIYTAP

They are a blowin'

The winds of change that is.

In a surprise move Emmah called an audible and declared that she wanted to go home.

... and so we are.

KEIYTAP

The end of the tunnel?

The elusive light is closer and brighter.

I'm not sure if the pain is managed enough to go home today, but we're zeroing in on the right combination. I don't know if it's so much that the meds are working any better as much as the retention is lessening and potential tumor response to the chemo.

The reality is that we have no way of knowing what is causing the easing of the pain. I suppose in the end it doesn't matter so much as the end result... though it would be nice to know going forward.

She got her catheter out yesterday afternoon and is getting platelets today. Last night was the first night that she was able to sleep without oxygen and keep her level up over 90%.

KEIYTAP

Hollow legs...

We've all heard the saying "must have a hollow leg"... right? So we're working on getting Emmah's legs hollow. We're still getting fluid out... quite a bit actually. They've turned down her fluid level to 10ml/Hr so for the metrically conversionally challenged (like myself)... it's .33oz/Hr... so not even enough to keep your mouth wet. Or in other words... one cup of water (8oz) per 24hr period. She is drinking some, but not a lot. They're still pulling about 2 to 2.5 liters out of her a day. We're seeing an improvement in her legs as they are "drying" out.

We're still tweaking the pain meds and trying to get her comfortable and on something that she can take at home. She's experiencing pain across her back and it hurts her left side to breath in deeply so they took a chest x-ray to check the lungs. That came back clear... so we're running out of ideas as to what could be the cause of this back pain. There is tumor on that side and it is that tumor that is impinging on the ureter to that battered left kidney. They've been watching and checking her output and so far the kidneys are functioning properly, so it's either tumor, or it's the fluid retention. Either way, we should see some kind of improvement since the lasix is drawing out the fluid and (hopefully) the chemo is having an impact on the tumor.

I guess only time will tell... uggh!

KEIYTAP

Why is it...

... that things have a tendency to get worse before they get better? Or that when they do change it's not exactly the direction you were hoping to go?

This is kind of where we find ourselves right now... and this is how it breaks down. Before I get into that... I want to say something.

"God... if you're reading... we're good... we have all that we can handle and then some... and it's a gross over estimation in what we can handle... as a matter of fact you can pass all these "life enriching events/activities to someone else" or change them even to bring us some uplifting news once and a while" Thank-You

Emmah's back pain (if nothing else) is persistent and for the moment no amount of morphine (least not a dose they've tried yet) seems to be helping. So that got ME thinking... I know that is shocking to some... me thinking, but what else is there to do to whittle away the hours sitting in the hospital? I'm sure that they (the doctors) are thinking too, but they're thinking for a bunch of kids... I'm thinking of just one here.

Here's what I've come up with...

We came here on Monday with Emmah in pain in essentially the high groin area... where the leg meets the torso... right in that fold and not so much back pain. The main complaint was indeed the right groin. Now... we have the primary area of pain being her back. This is what I know... when we got here to our room, they started her on a continual morphine drip. Among the many side effects of morphine is retention. So we've got fluids going in... we've got weight gain in spite of her not eating... we've got her sitting trying to void for hours on end... we have her with the sensation of having to void. Ironically we have an increase in back pain since being on the morphine to go along with the inability to void.

Let me first say that you couldn't pay me enough to be in the medical field... I would not want to have anything to do with being a doctor or a nurse. I do believe that there are very good doctors and nurses, but... not one of them (no matter how good they are) is clairvoyant. With that "fault" if you will comes the realization they are human and as such are vulnerable to the same inadequacies that we all have. I am not a doctor, but I can analyze things just as well as they can... sometimes better I feel.

• So we got an increase in back pain since being on the morphine.
• We've got the morphine essentially being useless in controlling the pain.
• We've got a known that morphine causes retention.
• We've got weight gain since the beginning of the week with no real food going in.
• We've got the sensation of having to void without the voiding itself... see retention.
• We have them twice giving her lasix (a diuretic) to help get out the fluids.
• I know that she's so drugged up that when she sleeps she needs oxygen otherwise she will destat and oxygen levels drop off.
• We have one good kidney and one kidney that is damaged goods... but no problems with kidney function thus far.
  

So last night I inquired about her back pain and I told them MY thoughts... the first year residences love us.

I was thinking that maybe it's time to put in a catheter and get the fluids to drain out. See, the way I was looking at it is we have the morphine causing retention, we have retention causing (I suspect) discomfort. We have discomfort causing the need for pain medicine... pain medicine that isn't doing anything. A vicious cycle if there ever was one.

They thought that Emmah's pain med needed to be turned up so that she would receive more.

Hmmmm...

So let me get this straight, we're going to give her a higher dose of morphine first keeping the retention problem going strong before trying to relieve the pressure at the dam.

Okay, I started this post the other day and I will update where we are now... now.

Not too much has changed, but this is where we sit as I tap this out.

She's still complaining of back pain. She's off the morphine and there's been an increase in the lasix and a decrease in the fluids being given now that she's done with the chemo having finished that last night. They raised the dosage on the fentanyl patch and they have started her on methadone by mouth and have raised that dose as well already. She also has been requesting ativan and benadryl and she's still on dilaudid. Talk about perpetual stupor.

It's a matter of "troubleshooting" Emmah and finding some combination that works.

That's it for now...

KEIYTAP

We can stop this "ride" anytime now... I'm done!

Yet again, we are back in the hospital.

If you've been reading along, you know that Emmah has been experiencing some discomfort. You should also know that we were up in Wisconsin having a "relaxing" tree cutting weekend. You should also know that they wanted to start chemo on Emmah on the 20th. You should also know that we declined and wanted to defer until after the holiday and tree cutting.

Okay... ? Okay.

How did we get here? Just lucky I guess...

So our intention was to leave Wisconsin Monday and come in Tuesday to start a round chemo. Then we had this idea that given that her level of discomfort was increasing we leave earlier Monday and see if we could get in on Monday. Fate must've been listening because it intervened yet again.

Oh we got in on Monday all right... just not exactly as we planned.

Seems that the discomfort had blown up into full blown pain. It's funny how things like that never crop up when you're awake and coherent... it happens @ 4am and you're forced to fight through the stupor and make a decision.

Emmah had been "managing" her pain with Tylenol, but when "it" struck... Tylenol wasn't doing it, so she took some dilaudid. Dilaudid wasn't doing it. Now what? We're about an hour and a half from U. of C. and while we were not in the middle of nowhere, we certainly weren't in a large metropolis either.

In the end we decided to call 911 and have her taken to the nearest facility. So first an officer showed up carrying a little bag. I'm not sure if he was EMT or not, but it wasn't long before an ambulance was rolling down the street out of which an elderlyish gentleman came out carrying a bag. Then another flashing light vehicle rolled down. Then finally the real deal ambulance came. Julie and I "joked" (to ourselves) that we could've gotten her to the hospital (up there) faster than us sitting there waiting for everyone to show up. Problem was we weren't sure where to go. I'm not complaining about the care she got from them, just that is seemed to take a while to finally get her on her way to somewhere.

We pretty much got everyone up and out the door and left everything behind.

We got to the hospital and we were nervous to allow them to access her port. For as much as we have it... "luck" was with is in that the nurse that we had in the ER used to work as an oncology nurse in Chicago... BUT that was over 10 years ago. We told her what size huber and how the ones who've had success in accessing her port do it. A Huber is what they call the needle that they stick into the port. She got it first attempt, so that was a good thing.

Huge actually.

So they administered some dilaudid through the port and that seemed to take the edge off a bit. Emmah's pain rating was a 10 out of 10 and this brought it down to a 7 (ish) she said. One small problem... when administering dilaudid via IV she has to be monitored for a bit to make sure there's no adverse reaction with the administered dose. Emmah's dose was kind of on the higher side, so by the time they felt comfortable allowing her to go, the benefit of the drug was waning a bit and the pain was climbing back up. A true catch 22 if there was ever one.

We finally got going when the going was as good as it was going to get and made a dash to Chicago... and THAT brings us back to the top.

So now that we're here, they've got her on a PCA pump and we are doing the chemo in hopes of again arresting any growth whilst we look at our options going forward. We have some options, but unfortunately there isn't one that is jumping up and down shouting, "PICK ME!"

They wanted to do a CT to see what was going on... I hate CT's... they expose her to too much radiation for our liking, but "they" say that a CT is the best method to peek inside. Anyway they wanted a CT. Problem was/is it hurts too much to be in a prone position and they can't scan her in any other position than being prone. Well they couldn't scan her in the position that was most comfortable to her and that was sitting up Indian style and folded in half. So sedation was in order. They got'er done.

The results of the CT show a measurable increase in one, and measurable decrease in two others. The changes in all instances were small, but measurable nonetheless. It also showed a small new growth too. It also showed (as the report stated) stable hydronephrosis of her left kidney... a know condition already... due to the tumor impinging on the ureter.

I asked if resection was an option... we were told no. So it's time to grab her records and send them off for a second opinion. Sending them off to Dr. Laquaglia @ Sloan Kettering... the same surgeon that did her first resection. So we will see if sending to him will make a difference since he's the guy that people go to when they (the people) are told by their doctors that it can't be done.

Right now, there's some concern of water retention as she's not voiding (peeing) like she should. What's going in isn't jiving with what's coming out. It's entirely possible that it's due to the continual morphine she's getting for the pain. It effects (among other things) the muscles of the bladder. She's looking a little puffy and has put on some (water) weight since Monday as she really hasn't eaten anything of significance. Plus she has the sensation or the wanting to go, but it's a hugely major production (not to mention many many minutes of sitting) to get it... ummm... flowing. The plan is to try lasix (a diuretic) to see if we can get all that water weight to go down the drain. If that doesn't allow things to get moving, then it's time for a Foley catheter.

We will see what tomorrow brings.

KEIYTAP