Tuesday, December 5, 2006

December 5th - 11th: The Kidney Dilemna

TUESDAY, DECEMBER 05, 2006 09:45 PM, PST

“Wait, so you mean you are going to take out my adrenal gland and maybe my kidney?”

“What exactly is an adrenal gland”

“Where will you make the cut and how big will it be?”

A sampling of questions from Keith in our meeting with Dr. Roman Sydorak to discuss his upcoming surgery.

Parent’s Note:

There was a lot of information put out there today and it was understandably difficult for Keith to take it all in, but he peppered a lot of questions at Dr. Sydorak just the same. Dr. Sydorak, in turn, did a great job of explaining what the surgery would involve and answered all of Keith’s questions – and ours. Before even beginning the discussion he asked Keith if he would like to look at the most recent CT ‘pictures’ of his tumor. So we walked over to another room and stood before a large screen displaying digital cross-sections of Keith’s body. “These are your ribs, these dark areas are your lungs, this is your spine…. liver… aorta…. vena cava…. heart… spleen… kidneys…. tumor.” Longitudinal sections, lateral sections, cross sections. It seemed that Keith was both grossed out and fascinated at the same time as he watched the surgeon scroll the mouse to move the section plane through his body starting at the top and moving down, explaining all of the parts as they appeared.

Back in the exam room he once again he repeated that the chemotherapy had done a great job of reducing his tumor and that he was absolutely confident that he would be able to get it all out. He drew a couple of hand sketches of Keith’s body and explained where the tumor was, prompting a barrage of questions, some of which are mentioned above. Keith was concerned and his eyes even welled up on a couple of occasions, but in usual Keith style he never lost it and was quick to recover his composure. There is a high probability that Keith will not need to have his kidney removed but that will ultimately be decided in the operating room.

There was some talk of having the surgery this Thursday but because Keith’s WBC and platelet counts need to be a bit higher we will wait one more week. Keith seemed to be relieved to hear that. We were relieved to hear that Dr. Sydorak has performed nearly 30 operations involving neuroblastoma tumors like Keith’s, many while at Children’s LA, so he is well aware of the issues and techniques needed for success beyond surgery

Maybe someday, if he feels like it, Keith can share with you the answers to his questions.


Parent’s Note:

No news is good news.


I could leave it there and it would be the briefest journal entry so far. But since some of you go to the trouble to check Keith’s updates daily I’ll type a little more just to make your visit semi-worthwhile.

Keith feels really good right now and his ANC has broken through the surface into the realm of ‘normal’, meaning he can go out and about without fear of some rogue germ spoiling his day.

As part of his home-schooling work he has set up a science experiment of sorts (as if his life isn’t already a science experiment). It is the classic put-the-celery-in colored-water-and-watch-what-happens experiment. This set up has a slight twist though. A single stalk of celery is partially split at the base so that one side is immersed in red water and the other side is immersed in blue water. I have to admit I’m sort of curious what exactly will happen. We also have a microscope with slides of bugs and plants on loan from Wagner Ranch School so Keith has peered with interest at most of the specimens. We both liked the slide of the Cyclops best (no, not the one-eyed Homerian monster), a type of plankton.

Which reminds me - I have been itching to go find some slimy pond water and see if we can find any of the cool stuff I remember studying in fascination as a kid looking through my basement microscope – volvox, euglenas, paramecia, vorticellas, hydras, stentors, amoebas, and most of all, the subject a prized middle school science paper way back when: planaria.

Now that Keith’s ANC is where it is we might actually be able to bring this slime into the house.


Parent’s Note:

Keith’s labs came back very good and his key counts are all up and heading higher which is exactly what is needed to allow next week’s surgery to proceed.

Because he was feeling so good today, he made some significant inroads into his pile of homework assignments. He has also voluntarily put aside his computer gaming to read several books cover to cover over the past few days. Ok, so he still worked in some time to play on his computer....

I thought Molly’s recent suggestions for nicknames for Keith were terrific. Now I’ve been known to affectionately call Keith “Keitharoo” and “Keithers.” But I know all of those pathetic cancer cells would cower in the corner with trepidation upon hearing the name “Keithanator.”

Lastly, we now know what happens when you put a partially split celery stalk into two separate cups of colored water. Of course I could just tell you but that would just spoil it for everyone…..

FRIDAY, DECEMBER 08, 2006 10:48 PM, PST

Parent’s Note:

Keith felt great again today and we expect a good weekend ahead. Because his blood counts look so good now, today was his final G-CSF / Neupogen infusion following his last cycle of chemo. He’s been receiving daily infusions since November 22.

Lacking another topic to share I’ve posted a recent photo of Keith and Scott in ‘gaming mode'. Have a great weekend - we plan to.....


Parent’s Note:

The big event today, besides Keith feeling great, was setting up the tree, stringing the lights and yes, decorating it to the hilt. Now the lights as previously mentioned were very clearly specified to not be those little white jobs, so big colored lights are the theme this year while the ornament theme is decidedly “sea-creaturian”. Octopi, puffer fish, starfish, a lobster, a sea turtle and a variety of other maritime critters swim about amongst the the colored lights. Very reefish.

Oh, and instead of a star on top, we found one of Keith’s favorite octopus stuffies and spread its tentacles out in very convincing and impressive starburst.

Keith just mentioned that I should add to the journal this item: Kirby is right-handed, or more accurately, right-pawed. Apparently this was concluded after observing Kirby clean his face after enjoying a tuna treat (it’s Kirby Appreciation Day again) and batting iPod earbuds (one of his favorite things to do). Now if he was left-pawed he would be a southpaw of course so maybe he’s northpawed…..

Rambling. Time to stop.

SUNDAY, DECEMBER 10, 2006 10:52 PM, CST

Parent’s Note:

A quiet, enjoyable and uneventful day at home. Keith continues to feel good and except for a few pills, a Broviac dressing change and the usual daily flush of his central lines no medical news to speak of so will leave it there for tonight.

MONDAY, DECEMBER 11, 2006 10:38 PM, PST

Parent’s Note:

It’s been great to see Keith having so much fun and enjoying a nice long string of days unfettered by treatment procedures. Of course that will change later this week with surgery on Thursday. But he has such a great attitude it seems to me, almost carefree, as though none of the indignities he has endured and still faces need to get in the way of enjoying the moment. I suppose it would be easy to dismiss this as a natural characteristic of any ten year old, but as my own parents can (and will) attest this was not a trait that I ever possessed.

Keith’s labs came back today with everything in the desired ranger so surgery can proceed as scheduled. Apparently Keith was initially disappointed that his counts weren’t lower, hoping for another week of freedom, but when Josie explained that would probably still mean going to the hospital for some sort of transfusion he agreed that it would probably be best to just go ahead and get this surgery over with.

So we are closing in on a milestone event in Keith’s treatment - to finally be tumor free. As with every step of his treatment we are confident in his caregiver's wisdom while at the same time filled with undeniable parental anxiety, hopeful that each procedure produces the desired results and that Keith is as comfortable as he can be through it all. Having him back home, on-the-mend and resuming his wonderfully carefree celebration of life will be a great Christmas present indeed.

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