January 1st - 8th: The Mysterious Missing Tooth

MONDAY, JANUARY 01, 2007 09:34 PM, PST

“An old poet said, 'It's better to go to the Rose Bowl and lose than not to have gotten there at all.'” Lloyd Carr

Parent’s Note:

Personally, I still believe Keith and his cap played a key role in getting them there. Still, it would have been nice to notch a win. In spite of the numerous block M sightings reported, including schools of fish and cloud formations the Wolverines just didn’t bring enough today to pull it off.

More importantly, Keith enjoyed another feel-good day and got together with his friends for most of the afternoon. Tomorrow it’s off to school for Scott and off to Lucile Packard for Keith for his pre-op physical.

Vacation is over, time to get back to work.

TUESDAY, JANUARY 02, 2007 09:27 PM, PST

Parent’s Note:

Our first visit to Lucile Packard Children’s Hospital of 2007 was uneventful. Keith passed his pre-op physical with flying colors, although he has been encouraged to eat as much fattening food as he desires in order to put a little weight on. So tomorrow’s bone marrow harvest procedure at Stanford should be almost an exact repeat of November 14th’s routine including setting the alarm for 3:30 am so that we can be first in line at the registration desk at 5:30. Ugh.

Keith has been through this once before and so there is much less mystery surrounding the procedure and his recovery routine. He seems so cheerful in general, and only gets moody when we talk about all of the treatment procedures remaining (so needless to say we don’t dwell too much on it).

Ann and Don need to head back home to Michigan soon after we leave for the hospital tomorrow and we will miss them greatly. We hope they are able to return soon.

WEDNESDAY, JANUARY 03, 2007 08:41 PM, PST

“I really think everyone should have some of this stuff” Keith offered this recommendation - visibly glazed over after receiving some very potent “happy” medicine just before entering surgery.

Parent’s Note:

In many ways today was a re-enactment of the events of November 14th right down to the “Are you sure you are scheduled to have surgery here today? – I can’t seem to find a record….” and “I don’t have an insurance pre-authorization on file – you’ll need to sign this financial responsibility form…” All this while Keith lay comfortably curled up on a couple of chairs in the waiting room at 5:30 am.

Apart from the administrative glitches, everything else seemed to go more-or-less smoothly and Keith was his usual remarkably brave, uncomplaining self once again. The surgery went fine and we met up with him in recovery. He woke up quite comfortably and without much pain at all, but after a while his eyes got wide and a look of terror crossed his face. “My loose tooth! It’s not there!”

Sure enough, one of the three loose teeth in his head was missing, causing quite a stir amongst the nursing staff, who proceeded to call the anesthesiologist, who then quickly showed up concerned that Keith might of inhaled it during the operation, and ordered a chest x-ray – stat - to find out if he did or didn’t, causing Keith to freak out as he envisioned the possibility of having to stay overnight to find and possibly have said tooth ‘extracted’ from a place where teeth aren’t customarily extracted. The x-ray technician rolled up the mobile x-ray machine, situated Keith a bit and zapped him. When the film was processed it confirmed that the missing tooth was……..phew!, not inside him. So somewhere in a lonely corner of one of the operating rooms at Stanford Medical Center is likely a small, well worn baby tooth, unnoticed yet longing for a Tooth Fairy appearance nonetheless. A few laughs and a few wiped brows and Keith was soon on his way to the Day Hospital where he spent the next few hours under observation. It was quite a sight to see him being rolled down the long public hallway between the Ambulatory Center and Lucile Packard flat on his back on a gurney while thumbing a GameBoy between his hands held high above his head the whole way. “Thumb therapy” we quipped as we greeted the nurses at the Day Hospital.

The rest of the stay was uneventful and we were eventually discharged, driving the 56 miles back home to Orinda on pleasantly uncrowded freeways for a change.

Keith feels fine, albeit a bit stiff, and has only needed one Tylenol so far – and we had to force him to take that one.

Just another day in the life of Keith.

THURSDAY, JANUARY 04, 2007 09:34 PM, PST

Parent’s Note:

Today Josie transported Keith 112 miles to and from Stanford just to have his dressing removed. Granted it was a very large compression dressing, fondly referred to in our house and by the nurses as a butt pillow, that wraps around the full width of his backside. Let’s see, that works out to about 2.8 miles traveled per square inch of dressing removed. It took 30 minutes of patient prodding just to loosen all of the sticky stick’um holding it on (granted, it could have been removed faster with one robust yet excruciating rip but Keith requested the slow water-torture approach).

While loosening the bandages, Keith’s nurse Karen must have tripped his talk button, asking him a seemingly innocent question about World of Warcraft just to take his mind off the task at hand. Well, now this is a subject that Keith happens to know something about in the same way Edward Teller knew something about the hydrogen bomb. Keith launched into lecture mode and he proceeded to explain all of the ins and outs, nuances and strategies of WOW for the next half hour or so until the nurse pried the last bit of dressing off his hairy backside. Voilà, fini.

A brilliant piece of nursing distraction strategy I must say. Or in eBay feedback terminology: Effective communication, careful (un)packaging A++++

FRIDAY, JANUARY 05, 2007 10:29 PM, PST

“Ok, I’m ready to teach one of you how to play World of Warcraft” Keith, tossed a look at Josie and me. “Who’s it gonna be?”

Parent’s Note:

If you can’t beat ‘em, join ‘em. I spent an hour and a half on the couch with Keith advising me on the necessary aspects of the game, from creating a character to battling Thistle Boars and Webwood Venom Spiders. In exchange for my superlative combat skills, I received some ragged leather boots and leggings that I think really accent my green hair nicely. My character is a Night Elf Druid named Zephlon and by anyone’s appraisal he’s one baaaad dude. Well, at least I think he is. Keith, good sport that he is, offered a few encouraging words when I leveled up and turned in a couple of quests. The rest of the time he was yawning I’m sure.

Anyway it was fun to have the master teach me a thing or two.

/LOL

SATURDAY, JANUARY 06, 2007 10:55 PM, PST

Parent’s Note:

A quiet weekend pattern has set in and no medical events to speak of. Keith feels good and his backside is almost back to normal after surgery on Wednesday. We took the opportunity to give Keith a physical workout of sorts by taking him to the UC Botanical Gardens in the hills above Berkeley. A beautiful day to be outside and Keith was quite interested in the whole experience but especially with the many varieties of cacti and carnivorous plants.

SUNDAY, JANUARY 07, 2007 10:35 PM, PST

Parent’s Note:

A fun day for both boys. Keith was invited to a friend’s house, and reported back later that he had a lot of fun exercising his friend’s two guinea pigs “Snicker Doodle” and “Tiddly Wink” in their back yard. Scott was invited along with his friend to go ‘bouldering’ at a local rock climbing establishment. His fingers were throbbing afterwards but he was able to complete some challenging climbs.

As Keith was getting his Broviac dressing changed tonight we noticed the old dressing was a lot more difficult to get off than it has been lately. Keith was complaining that it was pulling his hair. Hair? What hair? Upon closer examination we were surprised to notice the beginnings of fine little hairs on his body and head – even short little eyelashes. It’s been six weeks since his last chemo cycle so I suppose it makes sense.

Sadly, we are expecting a call from Children’s Hospital requesting Keith to check in for his sixth cycle of chemo sometime this week, so whatever hair is pushing it’s way out is probably in for a bit of a nasty surprise.

So speaking of hair, I’m reminded of one of my favorite adolescent silly poems fashioned by George Carlin. Thanks to a quick Google search I was able to recover it for your enjoyment. And while I love Keith’s bare head, as far as I’m concerned when he gets through all of this he can have “hair down to there” for all I care.

.

Hair Poem--George Carlin

I'm aware some stare at my hair.
In fact, to be fair,
Some really despair of my hair.
But I don't care,
Cause they're not aware,
Nor are they debonair.
In fact, they're just square.

They see hair down to there,
Say, "Beware" and go off on a tear!
I say, "No fair!"
A head that's bare is really nowhere.
So be like a bear, be fair with your hair!
Show it you care.
Wear it to there.
Or to there.
Or to there, if you dare!

My wife bought some hair at a fair, to use as a spare.
Did I care?
Au contraire!
Spare hair is fair!
In fact, hair can be rare.
Fred Astaire got no hair,
Nor does a chair,
Nor a chocolate eclair,
And where is the hair on a pear?
Nowhere, mon frere!

So now that I've shared this affair of the hair,
I'm going to repair to my lair and use Nair, do you care?

MONDAY, JANUARY 08, 2007 09:19 PM, PST

Parents Note:

It was a long day at the office for me today so unfortunately I can’t give a detailed first hand report of Keith’s day but he seems to have enjoyed himself and feels good as well. I did take his lab draw this morning and the results came back as expected – good enough to be admitted for cycle 6 of chemotherapy at Children’s. So tomorrow morning Keith’s busy schedule will include a post-op check up from his tumor resection surgery, yet another special genetic blood test that is needed by Stanford in advance of the autologous bone marrow transplant (BMT), followed by what will likely be a 4 to 5 day inpatient admission and what should be his last chemo cycle before his BMT procedure at Stanford later this month or early February.

We are working to prepare ourselves for the logistical challenges of the BMT, as Keith will be required to spend upwards of two months away from home – one month inpatient at Stanford and another month after discharge in an accommodation within 20 minutes of Stanford. And this assumes no complications.

For anyone who would like to know a bit more about this procedure, the following link will take you to Lucile Packard Children’s Hospital site.

Bone Marrow Transplant (Autologous)

December 24th - 31st: The Whoville Feast

SUNDAY, DECEMBER 24, 2006 11:14 PM, PST

Parent’s Note:

Just a few last minute preparations but otherwise we seem to be ready for Christmas festivities here in Orinda. Besides the usual gift exchange, food will be the dominant theme culminating in a feast that would make all of the Whos in Whoville cast an envious eye toward our table.

Keith hung up his stocking for Kirby and the gleam in his eyes as he imagined how much Kirby was going to enjoy his gift in the morning was quite evident. In a way I suppose that is the same feeling we all seek on the eve of Christmas as we take the time to appreciate all the people that enrich our lives.

In that spirit, all of the Kelley’s extend a Merry Christmas to all of our friends, especially so in a year when our friends and family have been so caring and generous toward us.

Be safe and enjoy.

Spot Quiz: What did the Whos in Whoville feast on in 'How the Grinch Stole Christmas?'

Answer (in binary code of course)

01010100 01101000 01100101 01111001 00100000 01110111 01101111 01110101 01101100 01100100 00100000 01110011 01110100 01100001 01110010 01110100 00100000 01101111 01101110 00100000 01010111 01101000 01101111 00101101 01110000 01110101 01100100 01100100 01101001 01101110 01100111 00100000 01100001 01101110 01100100 00100000 01110010 01100001 01110010 01100101 00100000 01010111 01101000 01101111 00101101 01110010 01101111 01100001 01110011 01110100 00101101 01100010 01100101 01100001 01110011 01110100

MONDAY, DECEMBER 25, 2006 11:04 PM, PST

“This meat is exquisitely done” Keith

Parent’s Note:

And not only that, the root vegetable gratin, tomato pudding, home-made rolls, applesauce, and salad were good too. Simply put, it was a great feast.

Kirby scored a cat-nip filled snowman, a set of “bizzy” balls, a sparkly thing on a stick, a peacock feather and some fancy feline treats all stuffed into a new knit stocking (which by the way is larger than any other in the household) with the words “I’m a lucky cat” on it. As much as Kirby appreciated all of the loot, his most favorite treat was a small morsel of canned tuna mixed with water. He meowed loudly and his tail twitched constantly as Keith carried the bowl down the hall to his dining area.

Keith and Scott had a great day as one might expect with gifts to open. But more importantly, Keith was really feeling good again physically with few lingering effects from surgery on the 14^th.

What a great Christmas present that is for us.

TUESDAY, DECEMBER 26, 2006 09:18 PM, PST

Parent’s Note:

A quiet day and a quick journal entry tonight. Keith and Scott both had friends over in the afternoon, so a lot of laughing and giggling emanating from the rooms where they were playing their games.

Tomorrow, if the storm hasn’t washed the roads out, we’ll try to get out and stretch Keith’s legs a bit – we don't want cabin fever to set in....

WEDNESDAY, DECEMBER 27, 2006 10:30 PM, PST

Parent’s Note:

This has been such a great week for us and especially for Keith – mainly because there has not been a lot of medical news to report. It doesn’t necessarily make for great reading but who cares as long as Keith is feeling good. He has been enjoying playing games and hanging with his brother. And yes, the roads were clear and we motored off to the mall to buy some shoes and a sweatshirt for the boys. Keith put some mileage on his legs and was rewarded by being able to spend some gift money at the game store.

At dinner tonight we were discussing how this website has been a great tool for us to stay in touch with our friends and family. And also how great the ‘Charlevoix’ community has been in supporting us through so many journal entries. To all of you who share a Charlevoix bond and to our wonderful friends a special thanks.

THURSDAY, DECEMBER 28, 2006 11:05 PM, PST

Parent’s Note:

Today was a carbon copy of yesterday, except we didn’t get Keith out of the house. He was very happy to stay at home and play video games with his brother thank you very much.

When I asked him on our 1 to 10 happiness scale what today measured he answered “good”. Ok, so it wasn’t the numeric answer I was seeking, but he explained later that it was great day.

This was a lab draw day, and the first in a week. When the results were returned it showed Keith’s platelet level to be above 300! This is the first time since his diagnosis in August that he has broken through the magic 300 level on his own (300 and above is considered normal). Armed with this information, Josie has been encouraging Keith to wiggle all of his loose teeth and get ‘em out of there ASAP!

Keith is sitting with me as I finish this entry and offers the following input:

Pink Mink
Purple Nurple
Green Spleen
Blue Stew
Red Bed
Gray Neigh
Black Snack

I then offered the following input:

Time for bed......

FRIDAY, DECEMBER 29, 2006 10:42 PM, PST

Parent’s Note:

Today was a ditto of yesterday’s carbon copy of the previous day.

Keith’s Michigan cap is in full preparation mode for the Rose Bowl game. Rumor has it that the team is sending a covert contingent of coaches and physical therapists to our house in the next day or two to put the ‘cap’ through the necessary exercise regimen and to review the latest playbook strategies. There was some talk of sending the cap to the Claremont Hotel and Spa for a long weekend of therapeutic treatments, including fashionable brim curling and logo embroidery enhancements, but due to the recent series of small earthquakes (3 to be exact – all of which we felt) that occurred directly below the Claremont over the past week that plan has been scrapped – too dangerous. The cap will spend 24 hours in a maize and blue hypobarric compression chamber receiving purified oxygen harvested from mid-field at Michigan Stadium while listening to piped-in recordings of Bo Shembechler’s best locker room motivational speeches.

USC simply doesn’t have a chance against the ‘cap.’


Keith thought a few more words added to his phrases would help...

Pink Mink Stink Drink
Purple Nurple Surple Flurple
Mean Green Bean Spleen
Chew Blue Gnu Stew
Red Fred Bed Head
Gray Sleigh Neigh Spray
Black Quack Snack Pack

SATURDAY, DECEMBER 30, 2006 11:13 PM, PST

Parent’s Note:

Today was a reenactment of yesterday’s ditto of the previous day’s carbon copy of the day preceding it…..with a couple of exceptions. Keith had a school friend over and they had great fun together for most of the afternoon and later a couple of friends and their families were over with their boys so more time for fun and games. A very social day of sorts for Keith, but unfortunately Kirby spent most of it cowering in the back hall closet, especially when the drum set became the focus of activity.

Not necessarily Keith related, but an interesting aside….Yesterday I took Ann on a day hike in the nearby Diablo Foothills Regional Park to test out my new digital SLR camera. It was a beautiful day, lots of interesting fauna – quails, and hawks as well as a small herd of cattle munching the new grass alongside the trail. A beautiful and dramatic landscape and some decent photos were captured but we later realized that Ann’s new cell phone had somehow slipped out of her pocket at some point along our trek in this huge, wide-open space. Armed with a challenge, and undeterred by the insanely small odds of recovering it we set out again today determined to find it, intermittently pausing to call her phone and then listening for some sort of faint ringing response as we re-traced our path. It reminded me of NASA trying to communicate with one of its lost Martian rovers. Eventually we successfully ‘pinged’ it and there it was, recumbent in a tuft of grass none the worse for wear despite its overnight camping experience. Even more remarkable, it was not sullied by one of the multitude of fresh cow patties dotting the grassy landscape.

Tomorrow is tree dismantling and decoration removal day along with further preparation for Monday’s big game at the Rose Bowl. Keith continues to feel great and seems very happy.

Reality makes its appearance again soon though, as Keith will have surgery again for a second bone marrow harvest at Stanford on the 3rd of January. It’s no fun, but we've been through it once before so it should be less of a surprise. This will be followed by another round of chemo, his sixth cycle, at Children’s Oakland sometime soon after. Then we head back to Stanford later in the month or possibly early February to undergo the actual bone marrow transplant procedure. More on that as it gets closer.

Best wishes from the Kelley's for a happy New year to all.

SUNDAY, DECEMBER 31, 2006 11:23 PM, PST

Parent’s Note:

I won’t start this entry by saying that today was a replay of yesterday’s reenactment of Friday’s ditto of the previous day’s carbon copy of the day preceding it. So instead I offer a simple checklist of Keith’s activities today:

Slept in ‘til 9 ü (ahhhhh…)

Pet Kirby ü (purrrr…)

Logged on to WOW ü (must level up…)

Pet Kirby Again ü (meow…)

Still Feelin’ Great ü (yeah…)

Showered & Changed Broviac Dressing ü (zzzzzzz…)

Visited Friend’s House ü (let’s go play WOW…)

Made and Ate Sushi ü (yummm…)

Visited Neighbor’s House ü (I have a video game…)

Rose Bowl Readied "The Cap" ü (on three, hut one…)

Determined to Stay up ‘til Midnight ü (we’ll see…)

Determined to Beat Cancer in 2007 ü (absolutely…)

December 18th - 23rd: Won't My Guts Spill Out?

MONDAY, DECEMBER 18, 2006 10:13 PM, PST

“Wait, if you remove that dressing, won’t my guts just spill out?” Keith making sure the surgical resident knew what she was doing before his outer dressing was removed this morning.

“There must be an airspace left over from where my tumor was removed, because when I walk, I can feel my insides move around.” Another gem uttered as Keith was getting ready to leave the hospital.

Parent’s Note:

My theory that Monday’s are productive days as days go in the hospital was borne out today.

Around 7 am this morning Keith’s surgeon, Dr. Sydorak, stopped by the room to check in. Of course Keith was still sleeping but I was awake getting ready for a day at the office. So the doctor and I chatted a bit and he asked how Keith was feeling; the usual stuff. After a while asked if Keith might be interested in going home today. Instantaneously we both saw Keith’s eyes pop open and a wide smile cross his face.

“Well, it will depend on whether or not you can take pain medicine orally or not so we can be sure you will be comfortable at home.” countered Dr. Sydorak with a feigned look of seriousness.

It was pretty clear to me that Keith would be willing to swallow the nastiest stuff ever used on Fear Factor just to get out of the hospital a day early. Apparently his acting skills honed in last year’s “Honk!” production paid off and the discharge papers were prepared in short order.

So if you recall yesterday’s journal, we were anticipating a Tuesday discharge, even that being a day earlier than the Wednesday discharge we had anticipated prior to surgery.

Well forget that, he’s already home!

It just goes to show: Keith is an odds-beater extraordinaire …….

TUESDAY, DECEMBER 19, 2006 11:23 PM, PST

Parent’s Note:

Apologies in advance as tonight’s journal entry is a bit lame.

I left the house for the office before Keith was awake and when I returned he was already asleep in bed so I cannot relay a first hand account of his day. What I can offer through Josie is that as of mid-afternoon he had not asked for any pain medication and was feeling pretty good overall. The only incident to speak of was an unexpected sneeze. Ouch. It just goes to show how we take for granted the muscles necessary to produce a sneeze.

Otherwise all’s well.

WEDNESDAY, DECEMBER 20, 2006 10:29 PM, PST

Parent’s Note:

A quiet day for Keith – sedentary for most of the day, not much of an appetite, but restoring his energy reserves nonetheless. He says he feels better today than yesterday so a steady recovery so far.

Apart from not having water service for most of the day because of a water main repair in the neighborhood, perhaps the most exciting event was a small earthquake around dinnertime centered a few miles from here in Berkeley. Earthquake

THURSDAY, DECEMBER 21, 2006 10:15 PM, PST

Parent’s Note:

The winter solstice is upon us and another good day for Keith. He’s very much on the mend. The day began with blueberry pancakes – what better start is there?

Later in the morning Josie and Annie accompanied Keith to the clinic at Children’s Hospital to have blood drawn (ten vials) in preparation for his next procedure at Stanford just after the New Year. With appropriate seasonal spirit Keith once again donned his Santa hat for the visit making everyone at the clinic smile. He is scheduled to have another bone marrow harvest so that there will be a back-up supply of stem cells for his bone marrow transplant. An insurance policy of sorts. The results of his lab tests all came back very positive. He has plenty of white blood cells, platelets and hemoglobin to go around.

The Christmas spirit is becoming more evident around our house. Besides the Great Barrier Reef tree and a gingerbread house that the boys decorated, we now have lights ablaze on the outside railings, lots of tempting cookies and candy floating around the house and a very positive sign indeed: Keith wants to get out of the house and go shopping for gifts for his family including, of course, Kirby.

FRIDAY, DECEMBER 22, 2006 10:28 PM, PST

Parent’s Note:

01001011 01100101 01101001 01110100 01101000 00100000 01101001 01110011 00100000 01100110 01100101 01100101 01101100 01101001 01101110 01100111 00100000 01100111 01110010 01100101 01100001 01110100 00100000 01100001 01100111 01100001 01101001 01101110 00100000 01110100 01101111 01100100 01100001 01111001 00101110 00100000 00100000 01010100 01101111 01101101 01101111 01110010 01110010 01101111 01110111 00100000 01110111 01100101 00100000 01100001 01110010 01100101 00100000 01110000 01101100 01100001 01101110 01101110 01101001 01101110 01100111 00100000 01110100 01101111 00100000 01110100 01100001 01101011 01100101 00100000 01101000 01101001 01101101 00100000 01110011 01101000 01101111 01110000 01110000 01101001 01101110 01100111 00100000 01100110 01101111 01110010 00100000 01001011 01101001 01110010 01100010 01111001 00101110

.

Having trouble reading binary code? Ok, if you really need help, copy and paste the code above into the translator located at the following: Binary

SATURDAY, DECEMBER 23, 2006 11:45 PM, PST

Parent’s Note:

The Christmas spirit was in the air and Keith felt like getting in touch with his inner-shopper today so he climbed in the car along with Scott, Annie, Don and myself and we headed off in search for the purrrr-fect gifts for Kirby. Needless to say I think Kirby will be very pleased with his presents on Christmas morning. Apart from doing a good thing for Kirby, Keith did a good thing for himself as well just by getting out of the house and giving his legs a little workout.

December 14th - 17th: Bye Bye Tumor

THURSDAY, DECEMBER 14, 2006 10:41 PM, PST

Parent’s Note:

I could draw this narrative out and bury the one bit of information that you want to know somewhere toward the bottom of this journal entry, but that wouldn’t be very nice. So here it is right up front: Keith is tumorless and doing great.

Now rewind for the chronological details.

Wake-up

8:30 am. 36 hours since his last solid food. NPO since midnight. Amazingly still in good spirits right up to gown time. 10 am and Pre Op is ready. Feeling a little sad now. More releases to sign. Keith climbs into the wheelchair. “Do you want to wear the Santa Hat?” “Sure.” Lots of cheers as he rolls past the nurse’s station and into the elevator.

Pre-Op

10:15 Holding area is very small. Dr. Sydorak greets Keith with a big smile. Keith tries to smile, but it’s hard. Keith asks: “Are you going to make sure that you put intestines back the way you found them?” Big smile from Dr. Sydorak. “Of course.” The anesthesiologists give Keith some Versed. Feeling much more calm now. “See you soon.” In exchange we get a beeper.

Post-Op / Recovery

1:45 pm. Dr. Sydorak explains to Josie and me that the operation went according to plan and Keith did great. We join Keith in recovery - a large bandage over his left side, still groggy and quite sore. He asks: “Did they save my kidney?” “Yes they did.” A sigh of relief. Keith is rigged up with a ‘magic button’ allowing him to administer his own pain medication through his central line.

Back Upstairs

to the same room we stayed in last night. No PICU. Keith tries to sleep – it really hurts to move and talk. So we’re quiet. Later Scott, Annie and Don stop by to greet Keith – still very quiet but happy to see them nonetheless.

A long day in a long journey. And a very good day indeed.... even though Keith might not think so right now.

FRIDAY, DECEMBER 15, 2006 10:04 PM, PST

Parent’s Note:

It’s pretty late here at the hospital and Keith is awake, comfortable and watching a movie on his portable DVD player. From what I can tell he is feeling much better tonight than this morning and certainly much better than last night at this time. He hasn’t had to use the ‘magic’ morphine button for about nine hours and he even managed to get into the bedside chair while his linens were changed. It hurt but it was good for him (so they say). Still not any real food intake since Tuesday pm but there is an inkling of an appetite starting to re-emerge.

We really appreciate all of the well wishes in Keith’s guestbook yesterday. Thanks for taking the time to write so many notes.

SATURDAY, DECEMBER 16, 2006 10:04 PM, PST

“Whatever you do, don’t make me laugh. I don’t want to blow my dressing off.” Keith

Parent’s Note:

Keith is feeling soooooo much better today. All of the Keithianisms that we have come to love started to re-emerge during the course of the day including his trademark upside-down smile-frown that he later improvised into a new variant: an upside smile-frown-smile. As far as I know he is the only human and possibly the only mammal that can do it.

The first attempt to get out of bed this morning was aborted when he got twisted around, causing him a lot of pain (he points the finger squarely at me for that one). Later with Josie he allegedly got out of bed, walked around the room and then out into the hall for a quick lap.

He felt so good that wanted his computer on his lap for the first time since the operation and after reading a few emails he came across one from Annie that featured photos of polar bears and a penguin video. The ‘blow my dressing off’ comment came after watching the video, the link to which I provide for your entertainment in the event you haven’t already seen it. Evil Penguin I suppose my brothers might both draw some similarity between themselves as ‘victims’ and me as ‘perpetrator’. 'nuf said.

.

As far as in-hospital television programming, no Food Network this time around. It seems Sponge Bob is more entertaining (and I would have to agree). Finally, his appetite is returning, and he was given an upgrade from clear liquids to a soft foods diet. Keith interpreted this to mean sushi. So tomorrow he gets sushi from our spic ‘n span new Safeway, replete with a sushi chef who will soon enough come to recognize Keith as one of the store’s premiere customers.

SUNDAY, DECEMBER 17, 2006 10:47 PM, PST

Parent’s Note:

In general, not much seems to happen around here (CHO) on Sundays and today was no exception. Keith sated his sushi appetite and managed to increase his overall food intake from yesterday’s levels substantially. A couple of laps around the hallways on the 5th floor under his own power, IV pole and all, and that pretty much sums up the highlights of the day. The nurses at the station over at the oncology unit always like to see Keith and invariably ask how he’s doing. I offered that he’s just not the same anymore without his tumor….

Hopefully Monday will bring some real productive activity. Keith is more than willing to give up his bed for someone else who needs it more than he does and would happily finish mending at home. We’ll see. My money is on a Tuesday discharge.

I snapped a couple of photos of Keith today with his current beads of courage inventory and I'll upload one of them soon. Heather had asked for a picture to post in the hallway on the “Beads of Courage” board. Compared to the last photo taken with his beads back in September I see three primary differences: 1) More beads. 2) Less hair. 3) Closer to being cancer free once and for all.

December 12th - 13th: The Long So-Long

TUESDAY, DECEMBER 12, 2006 08:21 PM, PST

Parent’s and Keith’s Note:

Keith and I decided that for tonight’s journal entry we would test your powers of observation. For those of you familiar with the popular children’s series “I Spy” this will make perfect sense. For those of you that aren’t, you’ll catch on pretty quickly, we’re sure.

Look carefully at the photo of the top of our 'Great Barrier Reef' Christmas tree and see if you can locate the following items. There are many undersea creatures to be found and be assured many more lurk in the branches outside of the field of view of this picture. Go to the photos page and click the link to enlarge the photo.

Good Luck!

A Prickly Blue Puffer
A Jiggly Jellyfish
A Fish with a Brushy Tail
A Colorful Sea Horse
2 Octopi Twins
A Lemon
A Pear (actually a rear view of a cat ornament, but it looks the same)
A Squiggly Orb (looks like a sunburst from the top)
A Green & Red Acorn
An Octopus “Star’
A Lobster
A Golden Pinecone
Corn on the Cob
A White Sheep (rear view)
A Polka-Dot Orb


Sorry, the only prize this time is the satisfaction that comes with completing the challenge.

WEDNESDAY, DECEMBER 13, 2006 10:18 PM, PST

Parent’s Note:

Keith spent quite some time admiring the lighted tree and shared a long so-long with Kirby this morning just before we headed off to Children’s Hospital. Josie is just recovering from a mild cold and reluctantly stayed at home. So it was just the two of us navigating the registration process, getting situated in a room and spending the remaining day here prepping for Thursday morning’s operation. The primary purpose of being here the day before is to clear Keith’s digestive track. As many of you probably already know there is something called polyethylene glycol and electrolytes solution (PEG), a liquid pleasantly referred to as an ‘evacuant’ that does just that but requires drinking quarts of the stuff. If you have followed this journal you probably also know that drinking medicine is not one of Keith’s favorite things to do. He has been trying his best to get this horrible beverage down but not able to swallow anywhere near as much as the nursing staff wanted him to.

Dealing with this liquid has been so hard for him that his social worker, Heather, actually stopped by and gave him a special courage bead for having to deal with it. He also picked out another special bead in advance for tomorrow’s surgical procedure. These are very beautiful hand blown glass beads donated by glass artists and all very different (I winked and asked if by any chance they had an undiscovered Dale Chihuly bead in somewhere there …..) Most are marble sized with some larger, some smaller. He spent a lot of time sorting through all of the beads and finally picked out a small yellow one with a few red spikes on it. When I asked him why he singled that one out he replied: “Because it is what I think my tumor probably looks like.”

Later the surgeon stopped by to check in on Keith and ask a few questions. Keith had a few for him as well, like “What kind of stitches are you going to use?” and “Do I really have to drink all of this stuff?” Answer 1: I’ll use the kind that melt away on the inside and we won’t need any stitches on the outside – we’ll use a special kind of tape instead. Answer 2: Naw, just drink what you can and if you can’t drink any more that’s ok with me. It was as if the weight of the world had just been lifted from his shoulders. Happily on with the surgery.

Apart from the ‘evacuant blues’ he has been in great spirits and has been wearing his Santa hat on the several occasions we have left the room. He was given a special ‘pass’ to the teen room so he took his favorite video game there and we played it on a large flat screen display where everyone could watch him publicly thrash me as his character pummeled my character over and over. And over. Later we watched a mandolin duet strum a few pieces outside of our room in the hallway.

About the same time Keith heads down to surgery Keith’s grandparents Annie and Don will be boarding a plane to San Francisco. The operation may take somewhere around six hours plus or minus so they might actually be in California before he is out of the operating room. He is very excited to know they will be here soon.

So as they say in the biz, all systems are go. Keith is cool as a cucumber and brave as a….(struggling for an appropriate simile here) a tiger?, a lion?. Not good enough. How about brave as a Keithanator.

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.

WEDNESDAY, DECEMBER 06, 2006 09:18 PM, PST

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.

THURSDAY, DECEMBER 07, 2006 09:36 PM, PST

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.....

SATURDAY, DECEMBER 09, 2006 10:50 PM, PST

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.

November 28th - December 4th: The Tumor Board

TUESDAY, NOVEMBER 28, 2006 09:53 PM, CST

Parent’s Note:

Keith and Josie arrived at Children’s for an 8:30 am appointment for packed red blood cells and platelets but after drawing labs it was decided only to give him platelets. His HBC had climbed a bit from yesterday so there is a slight possibility that he can get by without a red blood cell transfusion. More likely is that he will be back later in the week for the 'juice'. Josie’s sister, Christine, arrived today from Virginia joining Josie and Keith in the day hospital and will spend the rest of the week with us helping in any way she can. Many thanks to the Rohrer family for letting her come out and to Karen for delivering Christine from the airport.

Later Josie and I met with Dr. Feusner, Keith’s primary oncologist, to review his current status. This was a meeting we were both dreading and looking forward to. We were about to find how well Keith had responded to treatment over the last couple of months. Keith’s latest CT imaging from yesterday was reviewed by a group of specialists including Keith’s radiologist, surgeon and Dr. Feusner. The meeting occurred earlier today in a rather bluntly named gathering called the “tumor board”. As we searched for a room to sit down and talk, I had this awful flashback from early August as Josie and I were led to an empty office in the ER along with several physicians and a social worker to hear words you never, ever want to hear about your child; “cancer”, “it is very serious”, “it has spread”, “it’s going to be a long haul”, “your lives will change”. The words we were about to hear from Dr. Feusner would be either good news, or not; Keith would either be responding to treatment or he wouldn’t. In a way his life and ours seemed to dangle in uncomfortable silence as we walked down the hallway and situated ourselves in an exam room.

Why isn’t he saying anything?

The news turned out to be good. Better than good. Poker face. His tumor had reduced in size 90% from the time of diagnosis. From 1,000cc’s to 100. The doctor told us “To be honest with you, I was not especially looking forward to seeing the results. I was surprised at how the tumor has responded. It is very good indeed.” The surgeon also feels confident that the tumor can now be removed.

A big relief. A few more tests needed for this week including another CT scan of his head and a bone scan using radio isotopes to get the whole picture. And while we still have a long road ahead we have put some distance between where we began and where we need to get.

A recent guestbook entry asked whether Keith was still earning Courage Beads. The answer is yes. Here is his current tally as of a week ago:

2 Bone Marrow Aspirate/Biopsy = Beige
17 Course of Chemotherapy = White
2 Central Line/Port/PICC Line Inserstion & Removal = Orange
11 Clinic Visit = Blue
2 Emergency/Ambulance/Unusual Occurence = Magenta
1 Hair Loss/Thinning = Brown
1 Isolation/Fever/Neutropenia = Lime
2 Morphine/Dopamine/PCA Infusions = Purple
16 Pokes(IV Starts, Blood Draws, IM injections, Port Access) = Silver/Black
38 Tests/Scans(EEG, ECG, ECHO, MRI, CT, Bone Scan, Gallium..) = Light Green
25 Transfusions = Red
7 Tube Insertions(Catheter, Chest, NG, Foley) = Aqua
10 Sleep over at Hospital/Patient Admission = Yellow
1 Stem Cell Harvest/Dialysis/TPN = Dark Green
3 Surgery = Silver
1 Transfer to the PICU = Square Heart
7 Special Accomplishments and Recognition = Special Selection
______

146 Beads (and counting)

WEDNESDAY, NOVEMBER 29, 2006 09:41 PM, PST

Parent’s Note:

Sorry, no news of any merit tonight.

Keith felt good today even though his hemoglobin is low. We have stopped the overnight fluid IV and discontinued all of the antiemetics so he’s basically running under his own power again and the pink bucket can now be stowed. However, because he is neutropenic with his ANC hovering around zero, he spent the day at home and laid pretty low. Thursday should be a repeat of today’s (in)activities while Friday’s menu will feature a full day of tests with some RBC’s on the side.

THURSDAY, NOVEMBER 30, 2006 09:40 PM, PST

Parent’s Note:

As advertised, today was a quiet day at home for Keith – comfortable and happy. It would have been just another day except the lab results indicated that his hemoglobin and platelets were severely low (confirming his somewhat ghostly complexion). So a couple of phone calls later and the day hospital at Children’s was put on notice to be waiting for him bright and early tomorrow (Friday) to receive two units of packed red blood cells and more platelets. It seems the chemo has a residual effect and the daily G-CSF / neupogen hasn’t yet turned it around.

We are relieved that we are able to stay home tonight. There was some discussion of admitting Keith right away to get transfused, but since he claims he is feeling fine we were spared the inpatient admission.

Once Keith finishes being transfused sometime before noon his day at the hospital is not over. He will head to radiology for two more tests – a bone scan which requires a radio-isotope injection and a CT scan of his head. On top of it all he is severely neutropenic now, so he will need to wear a mask when he is not in an isolation room.

So a long and not a particularly fun day in store for Keith tomorrow, yet he seems to take it all in stride.

Well, there is the dog-faced puffer to look forward to.

FRIDAY, DECEMBER 01, 2006 10:18 PM, PST

Parent’s Note:

Keith toughed it out and made it through a long day of pokes, prods, IV drips, long scans and tests interspersed with lots of waiting (aka: boredom) in between. He did pay a visit to his new friend the dog-faced puffer in one of the waiting rooms but in general not a particularly fun day. On the other hand what had to get done got done and by late afternoon he was back home where he hit the sofa exhausted and slept until dinner.

Now at 10 pm with his new batch of red blood cells and platelets he is awake and recharged, ready to play WOW through the wee hours (if he could have his way).

Everything should be in place for him to have a good weekend with no scheduled medical events, and maybe he can even begin to pull his ANC out of the cellar so that next week he can romp with his friends again.

SATURDAY, DECEMBER 02, 2006 10:59 PM, PST

Parent’s Note:

Good days don’t necessarily require sensational news or big victories. Sometimes good days are quietly absent of any of that and this was one of those simple days.

So in keeping with the simple day, I offer a simple journal entry. Keith feels good and is back to his humorous, witty self again. What more could we ask for....?

SUNDAY, DECEMBER 03, 2006 10:48 PM, PST

Parent’s Note:

Pretty much a ditto of yesterday as far as Keith was concerned – it was a very slothful weekend by most accounts. Keith is feeling good and eating well to boot. I should say that we did in fact manage to pry him off his computer long enough for a quick trip to the local nursery were we picked out a Christmas tree. It will be delivered sometime in the next couple of weeks after we know more about Keith’s treatment schedule.

While we were there, Keith homed in on their cactus collection and picked out a few eclectic ones to add to the potted cactus garden at home. A couple of them were quite ‘Seussian’ in appearance.

We’ve had several family visitors lately. Keith’s aunt Christine is heading back to Virginia as I write this after almost a week with us and his uncles John and Chris were here recently as well. Great to see all of them and their help was much appreciated.

This Tuesday we will meet with Keith’s surgeon to discuss the upcoming procedure to remove his remaining abdominal tumor. It’s not clear when the surgery will be but it will most likely occur sometime within the next ten days, possibly even later this week, meaning that Keith should be out of the hospital and back home in time to enjoy Christmas.

Keith and Scott have put in their collective request. No little white lights on the tree this year. No, they want colored lights. Big ones.

MONDAY, DECEMBER 04, 2006 11:42 PM, PST

Parent’s Note:

I was only able to spend a few minutes with Keith today, so I can’t give you a blow-by-blow of his day. My first encounter was when I had to wake him up early in the morning before leaving for work to draw his lab samples. My second and final encounter was as he and Josie were heading off to Children’s Hospital for an unplanned overnight stay at around 5:30.

It seems that once again his hemoglobin and platelet counts are very low and he is in need of yet another transfusion of both. It’s too bad we couldn’t have found out earlier in the day so that we could handle this on an outpatient basis, but what can you do….

So other than this inconvenient little sleep over Keith presumably had another good day and felt ok despite ‘running on empty’.

20,000 visits and counting….. Thanks to everyone for checking in and keeping up with Keith’s progress.