February 9th - 15th: Still More Tests

FRIDAY, FEBRUARY 09, 2007 11:18 PM, PST

Parent’s Note:

Since I didn’t attend today’s little breathe-in at CHO today, I must rely on sketchy information provided by those who did - namely Josie and the subject of all this attention - Keith. Apparently the Pulmonary Function Test turned out to be a series of 3 or 4 different tests. Keith had to hold his breath for as long as he could for one, others required specific breathing patterns, and one involved inhaling a small amount of carbon monoxide to see what happens. It took a couple of hours to get through the whole thing and Keith came home exhausted (and a bit winded as well).

The respiratory therapist who administered the exam seemed to be happy with Keith’s results and as a bonus we found out that Keith does not have asthma. So one more test completed and one more box checked off in preparation for the main event – the transplant at Stanford later this month.

And we’ll all breathe better when we get through that….

SATURDAY, FEBRUARY 10, 2007 10:08 PM, PST

“Sure. I really like lobsters.”

(pause)

“Wait – not to eat!!!”

A funny moment as Keith responded to a misinterpreted dinnertime question. He’s a friend to all crustaceans after all.

Parent’s Note:

Ann and Don arrived today from Grand Rapids without any significant travel glitches – pretty good given the rainy weather in the Bay Area. They are planning be with us for a month or so to help us cope with the logistics of living a Palo Alto / Orinda co-existence once Keith is admitted for the transplant.

Rain all day long kept us mostly indoors except for a run to Walnut Creek at the request of Keith to satisfy a soft pretzel craving. He was particularly happy with his choice of a jalapeno pepper pretzel. The remainder of his day was spent at the keyboard of his laptop. Looks like more wet weather ahead for tomorrow, so we may need to scrap the rock scramble on Mount Diablo and seek out an indoor venue instead.

“Just make sure his Broviac is well secured” Keith’s oncologist offered when we mentioned this planned activity. Point well taken – I suppose we don’t need yet another reason to visit the clinic.

SUNDAY, FEBRUARY 11, 2007 09:52 PM, PST

Parent’s Note:

We took advantage of the breaks in the clouds to stretch Keith’s legs a bit. Back to the UC Botanical Gardens in Berkeley that has become one of Keith’s all time favorite places, mostly because of the newt filled Japanese pool in the Asian garden area. If it weren’t for the chill in the air, Keith would have been happy watching all of the newts (Taricha torosa) scurrying about just below the surface for hours. Alas, we all soon were drawn to the sunnier paths ahead and left the newts to embrace their newtiness unfettered by humans ogling into their watery habitat.

UC Botanical Gardens (map)

California Newts

MONDAY, FEBRUARY 12, 2007 09:55 PM, PST

Parent’s Note:

Tomorrow marks the first of several trips to Stanford scheduled for this week. Keith will make a brief appearance to receive an injection prior to Wednesday’s MIBG scan. Should be more time in the car than in the clinic.

Keith continues to feel well and we are doing everything we can think of to keep it that way during ‘flu’ season. Lots of washing of hands in our abode. That and ice cream. Keith is about enjoy an big sundae replete with hot fudge sauce he acquired on his recent visit to the Scharffen Berger factory. Nothing wrong with his taste buds. Mmmmmm.

TUESDAY, FEBRUARY 13, 2007 09:52 PM, PST

Parent’s Note:

Josie, Keith and Ann completed the long trip to Stanford and back according to plan - all 591,360 feet to be precise, not including the distance from the car to Clinic E and back.

Keith is slightly radioactive right now, having received a radioisotope injection (iodine-131-Meta-IodoBenzylGuanidine) earlier this afternoon in preparation for tomorrow’s MIBG scan at Stanford. Of course before that he had to swallow an iodine solution to protect his thyroid, and swallowing medicine of any kind is always the hardest part for him.

This is the second time this scan has been performed on him, the first at UCSF back in September. The scan is designed to identify any areas where neuroblastoma cells may still linger. It is a very sensitive method of detecting the spread of cancer in bone and soft tissues and this scan will be the last of the staging diagnostics that will be performed prior to his admission for the Bone Marrow Transplant. He’ll need to lay motionless for about a half an hour, but he’s become pretty accustom to this sort of thing by now so it shouldn’t be a big deal at all. On Friday Josie and I will meet with the doctors at Packard for a pre-admission consultation and at that time all of the test results should be in hand and assessed by all of the various specialists.

The results from last week’s bone marrow aspiration at Children’s showed no neuroblastoma – an expected result, but still very good news.

No neuroblastoma. I like the sound of that.

WEDNESDAY, FEBRUARY 14, 2007 09:54 PM, PST

Parent’s Note:

We were on the road by 6:15 am this morning heading down to Stanford. Keith grumbled with outrage at the lack of light in the sky but he was quick to resume his slumber in the back seat of the car; a mobile bedroom of sorts. We did have a few minutes to grab a bite at the Stanford cafeteria before showing up at the nuclear medicine department. Keith was crumbling with hunger by then and dove into a large maple doughnut with such élan that it vanished before I had taken the first sip of my coffee.

The nice part about being the first appointment of the day is that there is seldom a long delay in the waiting area. Keith was soon led into the scanner room and selected a video from one of the two large cardboard boxes beneath the rolling TV / VCR combo. The series of scheduled scans consisted of four separate 10 to 24 minute passes, so having something to occupy his mind while the rest of his body needed to remain motionless was important.

Keith looked through the offerings and there was the usual Barney, Little Mermaid and Thomas the Tank Engine titles. He finally chose one of those funny animal videos. The technician got Keith situated on the scanner bed, plugged in the VCR and soon began the first scan.

The room itself was about 18’x18’, sparsely adorned with a few chairs, a counter and a couple of monitors around the perimeter. Dominating the center of the room was the impressive Phillips scanner that was ‘parked’ quietly to one side but came to life like one of those automobile assembly robots in slo-mo when the technician pressed a few buttons on his remote. As the two large imaging plates swung into place and passed over and around Keith’s motionless body, grainy images could be seen generating on the monitors in the corner – first his head, then his chest, and finally his legs.

The room lights were dimmed to a fine dining light level and I was taken by the surreal experience as the whirring sounds and precise motions of the scanner combined with the “Blue Danube Waltz” soundtrack of the funny animals video segment. It was “2001 a Space Odyssey” all over again – very Kubrickian.

Nonetheless, Keith performed his ‘dead possum’ routine flawlessly, not twitching a bit during the entire procedure, and he received praise from the tech for the very nice, clear pictures he was able to collect thanks to Keith’s help.

Soon we were back in the car and headed to Orinda again. It turns out Keith will need to return once again on Thursday to repeat the long 24 minute 3D scan at the doctor’s request. A bit tedious but manageable in the big picture of things….

Happy Valentine’s Day to all.

THURSDAY, FEBRUARY 15, 2007 10:29 PM, PST

Parent’s Note:

Josie and Ann delivered Keith to the Stanford nuclear medicine department again today. Keith was scheduled for what we thought was a repeat of the same 20 minute torso scan he had the day before. As it turned out he received two scans instead, the first a simple 10 minute scan – no problem. But no one was prepared for the second one. It turned out to be a long, continuous 40 minute scan and by the end of it Keith was about ready to scream he was so exhausted – certainly mentally and probably physically as well, having to lay so still for so long. It was very hard for him, as it would be for anyone, but he did manage to get through it without wiggling. I’m sure the last thing he wanted was to have the technician repeat the whole thing again if he were to have given in and twitched during the 39th minute.

For about ten minutes during the scan Josie and Ann were asked to step behind a glass partition for their protection. Alas, poor Keith wasn’t the beneficiary of such protection. So it wasn’t the quickie in and out scan that anyone (in our house at least) had envisioned. Josie had a post-scan plan that centered on enjoying lunch at one of the outdoor cafés in the nearby shopping center. It was to be a reward for Keith having to put up with the procedure and a reward to Josie for the stress of such a long drive. But after what he had just gone through Keith just didn’t have the interest or energy, so back to the car for the return trip home it was.

By the time I returned home from work later in the evening, Keith was back to his usual happy self again, a testament to his mental fortitude and amazing resilience. Friday is the big meeting with the BMT doctors to lay out the plan for the months ahead.

February 3rd - 8th: Hair, Chocolate and the QM2

SATURDAY, FEBRUARY 03, 2007 09:20 PM, PST

Parent’s Note:

Keith is enjoying this recent string of days very much and is feeling and eating well. That makes all of us feel good. Because he was feeling so well, we thought this would be the ideal weekend to knock off several errands. So, this morning as we were getting organized for the day there was a funny exchange preceding Scott’s impending hair cut appointment. It went something like this:

Josie - Ready for your haircut?
Scott - Yeah, I guess.
Josie - Have you thought about what you want to ask the barber to do?
Scott – Yeah, I just want a trim. About a quarter of an inch off.
Steve – Wait, it’s been six weeks and you’re asking for only a quarter of an inch off?
Scott – Yeah, last time I asked for a quarter of an inch off and he took about 3 inches off.
Josie – Have you considered combing your hair slightly differently? I realize you want to cover your ears, but it seems a bit funny to comb the sides forward so much.
Scott – I like it this way. Everyone in school wears it like this.
Steve – Here, let me take a picture so you can see it. (snap….)
Scott – Yeah, well my ear only looks weird just because my hair is still a little wet.
Keith – You do look kinda’ nerdy that way.
Scott – Look, I know what I look like and I like it that way.
Josie – Steve, like you didn’t wear your hair that way. I’ll bet your mom had the exact same conversation with you.
Steve – Well, ok, I did have longish hair, but I didn’t push it forward like that. Here, let me show you. (I pull out a 1974 picture from high school)...

Scott – Dad, it’s longer than mine.

Steve – Oh, I guess so. Hmmmm. Why don’t you get your hair cut like Keith’s?
Keith – Yeah, my hair is stylin’.

Pause….

Scott – Keith, you don’t have any hair.
Keith – Oh yes I do – It’s not very long but it’s cool. It’s fuzzy like Kirby’s

Scott did get his hair cut just the way he wanted it. One quarter of an inch off – pushed forward. $30 plus tip. Josie asked the hairdresser if this was a popular style in school nowadays. “Yeah, it sure is. Have you ever heard of the Beatles?”……………….

******

The other errand of note resulted in a new car – it’s been almost eight years since we last stepped foot in a showroom. We were dead set on making sure whatever car we ended up with it was ABS equipped (Anything But Silver). You see every car we’ve ever owned has been silver. Josie now has two cars (well, temporarily) – one silver and one electric blue mica, with the emphasis on blue. No sheepish, boring, blends-into-the-sea-of-silver-cars-in-the-Safeway-parking-lot color.

I might need to go shopping again soon – I’m still feeling that mid life crisis is coming on….

SUNDAY, FEBRUARY 04, 2007 09:52 PM, PST

Parent’s Note:

Another good day for all of us.

Keith was invited by a friend to visit the Scharffen Berger Chocholate factory in Berkeley. He had been looking forward to it for several days. They listened to a talk about the chocolate making process, toured the factory and finally and most importantly tasted samples of the offerings. Keith brought home a bag of chocolate bars and a jar of his favorite fudge topping for ice cream. Hey, the kid has good taste.

Scharffen Berger Virtual Tour

Scott spent the afternoon at a friends and I took advantage of the great weather to do a hike in one of my favorite nearby open spaces.

The Queen Mary 2 passed under the Golden Gate this afternoon and should be tied up at Pier 27, directly across the street from our new office on the northern waterfront. Apparently it is the largest ship ever to enter the San Francisco Bay. Some 2000 well-heeled world travelers should be prowling around the neighborhood for a few hours on Monday. I’m just hoping to score a parking spot somewhere within a half mile of my office.

The Queen Mary 2 Arrives

MONDAY, FEBRUARY 05, 2007 09:24 PM, PST

Parent’s Note:

Keith enjoyed another day more or less free of medical procedures. He and Josie ‘did breakfast’ in Walnut Creek where Keith and his acute gastro-olfactory receptors led them to Auntie Anne’s Pretzels. Keith requested an order of fresh-out-of-the-fryer cinnamon stix and consumed them post haste. The food themed outing continued on to Whole Foods where Keith spotted some crab cakes that he enjoyed immensely when they got back home.

Tomorrow morning the nice folks at Children’s Hospital’s radiology department want to see him bright and early. He has a 7:30 am rendezvous with the CT scanner followed by a visit to nuclear medicine and their bone scanner around mid day. Both procedures he has done several times before, so no major anxiety but he cannot eat after midnight tonight so he’ll be pretty hungry before it’s all finished.

In Keith’s free time, between eating, schoolwork and pokes & prods, he enjoys sitting with Kirby on the sofa playing WOW.

The posted photo pretty much sums it up…..

TUESDAY, FEBRUARY 06, 2007 09:26 PM, PST

Parent’s Note:

Keith and Josie headed out this morning at the appointed hour, registered at the radiology department and greeted the CT scanner all before the commute hour got into full swing. Then it was off to the nuclear med department where, due to their powers of persuasion, they were able to squeeze in the bone scan earlier than scheduled. Back in the car and home before noon where he noshed on a well deserved Pop Tart. Now that’s no foolin’ around efficiency for you.

Tomorrow it’s back again, this time for a physical exam and another bone marrow aspiration, for which he will undergo full anesthesia.

Keith did make an activity request for this weekend after Annie and Don arrive. He wants to go rock climbing at Rock City on Mount Diablo. It has been a while since we were last there but it’s a great spot full of cool sandstone formations and ‘wind caves’ that one can climb onto and into. The posted photo is from that trip in 2004 and even then Keith was perfecting his upside down frown smile.

The good news is he has tons of platelets right now……

WEDNESDAY, FEBRUARY 07, 2007 09:10 PM, PST

“I’m really, really hungry” Keith

Parent’s Note:

Scott had breakfast and was off to school before Keith woke up this morning. Just as well, Keith had to remain “NPO” as they say in medical lingo – that is he could not eat or drink anything until after his Bone Marrow Aspiration later in the day. Both Josie and I decided it was only fair that we not eat anything as well, so in a dietary show of solidarity we headed off - already hungry - to Children’s Hospital to await Keith’s first appointment.

It was a busy day at the clinic. Without pointing this out to the others I made a mental note of the several “No Food or Drink” signs in the waiting area while the wall mounted TV was running commercials purveying food items - sugary snacks mostly. Torture…

Keith soon had his vitals taken and we were led into a small exam room where we spent the next 3 hours. Keith received a physical exam and then provided – no kidding - 20 lab vials of blood, most to be sent for specific testing at the request of Lucile Packard Children’s Hospital in preparation for the BMT. Around 3pm – some 17 hours since his last morsel of food the day before - Keith was led into the operating suite. He shed his favorite squid charm necklace, his shoes and his sweatshirt and climbed up onto the table. A very brave and very hungry kid. The anesthesia was very quick acting. We said ‘see you soon’ just as his eyes glazed over.

We met up with him again in the recovery room. He woke up comfortably – but now extremely hungry so we were quick to get a move on. By around 5 we were on our way back home where Keith was finally able to launch a frontal assault on the kitchen.

Ahhhh……

Just another day at the office for Keith.

THURSDAY, FEBRUARY 08, 2007 10:20 PM, PST

Parent’s Note:

Well, except for being a bit sore in the dorsal area from the aspiration procedure yesterday Keith had a good day and was actually able to catch up on some of his schoolwork again.

He has been a night owl lately, staying up late reading and sleeping in late. When he finally climbed out of bed mid morning his first words (apart from complaining about his posterior) had to do with food.

Keith: “I’m hungry. What do you have for breakfast”

Josie: “Well, what do you want?”

Keith: “Do you have coffee cake?”

Josie, assuming that he would be too hungry to wait responded: “No, but if you are willing to wait for a while I suppose I could make some.”

Keith: “Okay, sure.”

So Josie, hoping to get some power knitting in among other things, sighed and got to work making Keith his coffee cake.

And he enjoyed it immensely.

January 27th - February 2nd: Kirbzilla and the Rules of Golf

SATURDAY, JANUARY 27, 2007 10:22 PM, PST

Parent’s Note:

Keith felt quite good again today.

He enjoyed Scott’s company and had a friend over most of the afternoon, making it a very fun day for him. Later the boys even tried their hand at making a video, using what else but Kirby as subject matter. They edited the raw footage on the computer and were quite happy with the results.

Yep, today is Kirby appreciation day again so we fed him a little extra. He’s still as big as ever.

If you happened to see a 30 story feline prowling amongst the high-rises along Market Street today that was Kirb-zilla.

wink…

SUNDAY, JANUARY 28, 2007 10:22 PM, PST

Parent’s Note:

The boys and a friend of Keith’s were in our family room reviewing some of the video footage they had recently captured on the computer. The TV was on and tuned to a golf tournament with nobody in particular watching it. At one point Keith looked up and was fascinated by one of those super slo-mo close up replays of a bunker shot. The following conversation ensued:

Keith “Hey, that guy missed the ball, he just hit the sand and the sand just flew up and pushed the ball out”
Dad “Well, that’s how you are supposed to do it. These guys are professionals.”
Keith “So what if you swing and the ball doesn’t move – is that a stroke?”
Dad “Well, it is if you have addressed the ball.”
Keith “So what if you hit it out with your hand?”
Dad “Let’s see. I think that would be a stroke plus a penalty stroke.”
Keith “What if you throw the ball out of the sand trap into the hole?”
Scott “Well, then you would probably be disqualified.”
Keith “What if you blow on the ball and it moves?”
Scott “Disqualified.”
Keith “I just don’t get why there are all these rules.”
Dad “Yeah, there’s a whole thick book of them.”
Scott “Obviously you don’t know the rules of golf.”
Keith “Well obviously you just don’t know how to cheat…”

Maybe he’s read too much Calvin & Hobbes, but one of the things I love about Keith is the way he can end a conversation with such punctuated wit leaving me feeling like the straight man.

Tomorrow (Monday) we will draw lab samples to see where Keith’s blood counts are and then he will climb in the car and take his wit to Stanford where he will undergo a kidney function test that takes 5 hours or so to complete. We are hoping the lab results will show that he does not require another transfusion of red blood cells or platelets.

If that’s the case the rest of the week should be smooth sailing.

MONDAY, JANUARY 29, 2007 08:40 PM, PST

Parent’s Note:

Josie did a great job getting Keith to Stanford and back today in commute traffic – not an easy task.

Keith drank 30 ounces of fluids for the 5 hour GFR (renal function) test. Definitely not an easy task (especially for him – he’s the human equivalent of a cactus in terms of fluid intake)

The rest of us had relatively easy days, including Kirby who just sat around and did the two things that a large housecat does especially well – sit around and eat.

Keith’s labs came back uber solid. His ANC is up to 5400, his platelets are climbing and his hemoglobin is stable. He’ll stay on GCSF for another couple of days at which point we’ll spare him from the daily annoyance of being hooked up to a pump with a tube for an hour.

Microbes…. Bring ‘em on!

TUESDAY, JANUARY 30, 2007 11:39 PM, PST

Parent’s Note:

A late post and a short one I’m afraid. Keith continues to feel well and is in good spirits. No medical news of any note to report, he just enjoyed a simple day at home and managed to get some overdue schoolwork done.

You’ll get no complaints from me when days like this come along.

WEDNESDAY, JANUARY 31, 2007 09:34 PM, PST

Parent’s Note:

Keith had a great day again so once again I am challenged to report any new news tonight. While this may not make for interesting reading it certainly is fine by Keith. He’s just a bit tired of always being responsible for having to ‘make news’ so whaddya’ say we just give him the rest of the week off.

I’ll take this opportunity to lay out the outline schedule for the next few weeks leading up to the Bone Marrow Transplant. First up, he will have a pre-admission dental check up. If anything needs attention it must be taken care of before the BMT admission.

Next week things start to get more interesting. Keith is scheduled for another CT scan, a bone scan, a physical exam, a bone marrow aspirate and a pulmonary function test (he did not actually have the PFT last Wednesday as I reported) all at Children’s.

The following week it’s back to Stanford for a couple of days to complete the MIBG scan and if all systems are go and Keith passes all of the precursor diagnostics then the BMT admission would happen soon after. Seems to me for someone who is not in regular school, he sure has to take a lot of tests.

We also learned a while back that Scott is not a donor match for Keith, so we’ll continue forward as expected with Plan A.

THURSDAY, FEBRUARY 01, 2007 10:49 PM, PST

Parent’s Note:

Wow, I’m really struggling again tonight for a topic as Keith continues to hang in there and feel good. For me, Keith’s buoyant personality and amazingly cheerful demeanor take some of the sting away from the reality of parenting a child with cancer. Some day I hope to muster adequate words to describe some of the very difficult emotions and refocused perspectives that this uninvited intruder has set into motion in our household. But for now it’s ‘Journal Lite’- I don’t feel I have the energy to go there just yet.

So…. following my earlier precedent that established that if there was no real news to report, post a recipe. So here you go: Root Vegetable Gratin . I’ve made this a couple of times and think it’s great so give it a go before winter ends – it’s sort of comfort food. You’ll see from the ingredient list it’s certainly not ‘Lite’ fare but all those calories will keep you warm.

Non sequitur number two….. My very good friend Mike who grew up with me back in Michigan is turning the big five-oh in a few days. Of course, that means that I’m not far behind. I haven’t given much thought about how one is supposed to act when one turns that corner in life. Does one need to study the finer points of becoming a ‘geezer’ or does it just happen….? Some research is in order.

I think I’m feeling a second mid-life crisis coming on.

Yep, I think I need a new car….

FRIDAY, FEBRUARY 02, 2007 09:28 PM, PST

Parent’s Note:

Keith sailed through his dental appointment today, receiving only a gentle but firm reminder it maybe it might be good to brush his gums as well. He also squeezed a language arts and math test into his busy schedule.

I think it’s safe to say he was thoroughly examined today.

January 23rd - 26th: You Can't Argue with a Happy Cat

TUESDAY, JANUARY 23, 2007 08:34 PM, PST

Parent’s Note:

Children's Hospital day four. It’s been a very uneventful day here so I won’t bore you with the details. Keith feels quite good despite the fact that his ANC is equivalent to the cubed root of 125 minus 5. On the brighter side his WBC count increased from zero to .2 (I believe in mathematical terms that’s an infinitely large percentage gain). The nurse that admonished him to 'get to work' yesterday complimented him on his progress today. What a difference a day makes….

We have noticed for some time that Keith’s head has started to repopulate itself with some fuzzy stuff that sort of resembles Kirby’s fur, although not as dense I suppose. What I hadn’t taken careful notice of until recently was his fresh eyebrows and eyelashes. Especially his eyelashes. Oddly, while the hair on top is struggling to make itself visible, his eyelashes are fully regenerated to their former giraffe-like glory. Eyelash follicles are clearly overachievers. Not sure why it has taken me so long to notice how these diminutive hairs around our eyes give presence to a face.

WEDNESDAY, JANUARY 24, 2007 10:02 PM, PST

Parent’s Note:

The chatter amongst the doctors is that Keith is going to be given his walking papers from Children’s Hospital as soon as tomorrow (Thursday) assuming that between now and then he doesn’t have a recurrence of his fever. The cultures have all come back negative so far and the suspicion is that he had some sort of viral episode as opposed to a bacterial infection. In any event he looks good and feels good right now. He did receive another transfusion of platelets last night and hopefully these will last a bit longer than the last batch. A barrage of procedures lie ahead in advance of the BMT and his blood counts need to be up to spec before many of them can proceed.

This unscheduled five-day stay at the posh 5-South Immunocompromised Club has played a bit of havoc with the choreography of all these precursor tests. Apart from the sheer number of tests, we are faced with an additional logistical challenge of some being performed at Oakland and some at Stanford. What triggered the reshuffling was a missed MIBG scan at Stanford earlier this week that couldn’t be rescheduled until the next available slot a couple of weeks from now. It’s somewhat sobering to realize that this machine is in such heavy demand. So it looks like the date of the BMT admission to Lucile Packard will slip back a week to later in February.

Keith did managed to squeeze an echo / pulmonary function test into his busy schedule today. That's one down…

Keith has his face back – at least temporarily.

THURSDAY, JANUARY 25, 2007 09:39 PM, PST

shhhhhhhh……

Word on the street has it that he’s busted out again and he’s holed up in Orinda.

Childrenz might need to secure their utility tunnels….

FRIDAY, JANUARY 26, 2007 10:59 PM, PST

“I must say, you can’t argue with a happy cat” Keith

Parent’s Note:

Friday has arrived and Keith feels well, so what’s not to like? This weekend Keith aims to enjoy the 3 F’s of being home - food, friends and fuzzy felines.

Ok, maybe a little computer time as well…

January 18th - 22nd: A Fever is Bad when You're Neutropenic

THURSDAY, JANUARY 18, 2007 08:49 PM, PST

“You know, you’re right. I feel a lot better after sleeping in” Keith agreeing with his Mom’s recommendation not to climb out of bed at the crack of dawn.

Parent’s Note:

Knock on wood……

What a difference a day makes. Not only was the pink bucket banished to the dusty shadows behind the sofa – never to make an appearance all day, the USPS came through with the object of Keith’s desire – a parcel containing his much anticipated expansion pack for W.o.W.

First his game update.

Well, news that the mailbox held a package with his name on it from Blizzard Entertainment made him ecstatic. The race was on to rip off the cellophane wrapper and pour out the contents. In no time, Keith installed all of the disks, uploaded the patches, launched the game, created a character and jumped into a new realm of fantasy. The screenshot above is the character he created. Nice eyebrows I say.

Name: Kokopuffs

Race: Blood Elf

Class: Hunter

Trade: Leatherworker

Current Level: 10 and climbing….

Happiness factor of operator: Unmeasurable…

As for Keith himself, before heading off to work today I drew his usual labs and dropped them off at Quest. As anticipated his counts have fallen off steeply and his ANC has slid back zero again. It’s time again to be very careful as far as germs go. That said, he is feeling a whole lot better today and showed interest in food once again.

I suppose it is the not-so-good days that make us really appreciate the good days. The mood in our house parallels Keith’s….when he’s happy so are we.

And he is.

FRIDAY, JANUARY 19, 2007 09:31 PM, PST

Parent’s Note:

Keith continues to feel good and we’ve reached the point where we feel we can wean him from his overnight hydration - the first time since his last chemo ended. Despite Keith’s brief Pas de Deux with the pink bucket, the hydration routine provided a huge benefit to making his home recovery as easy as possible.

Of course he spent some time developing his W.o.W. character today. ‘Kokopuffs’ is now level 15 and is accompanied by a nifty fire-breathing pet dragon-hawk named ‘Kokocrispies’. Together they make an imposing pair. Scott is attending a ‘boys’ night out’ event - a friend’s birthday party including a sleepover. That should be a fun and in all likelihood a sleep deprived experience.

Chances are pretty good that we will be making a weekend visit to Children’s for a platelet transfusion with a possible upgrade to both platelets and red blood cells. We’ll see after we drop off Keith’s lab samples tomorrow.

SATURDAY, JANUARY 20, 2007 09:42 PM, PST

“I’m really thirsty……Can I have an ice cube in my chocolate milk” Keith

Parent’s Note:

Not the day we were expecting.

An innocent sounding request to most, but to us sirens, bells, whistles and fog horns blared upon hearing these few words. Out came the thermometer and sure enough he had a fever of 102.5 degrees. For the rest of us 102.5 can be managed, but for an oncology patient with no functioning immune system this is a big problem and can be life threatening if not dealt with quickly. Within minutes we were in the car heading for the emergency room at Children’s.

By the time we reached triage his temperature had spiked to 105 and he was whisked off to begin hydration and antibiotics. He is now admitted overnight and will remain in the hospital until he has a semi-functioning immune system again and that will probably be days from now. Worse, there was no room for him in 5 South, the special oncology unit where neutropenic patients are cared for and so he was placed in a shared room down the hall, requiring him to wear a mask. Now it's not easy to breathe, let alone eat when wearing a mask and Keith wasn’t happy at all with the situation. Thankfully we were told a while later that a room was made available in 5 South for him and we eventually got situated there. Keith finally could remove his mask and relax a little.

As of this writing his temperature has been swinging between slightly elevated and 103 but it seems to be controllable with Tylenol. He will get his platelets when his temperature is stabilized and hopefully the antibiotics will do their job soon. Amazingly, this is the first time in all of his cycles of chemotherapy that he has had an infection so we have been very fortunate so far. I suppose the odds finally caught up with us.

We had planned to make a day visit to the hospital to get a platelet transfusion and the lab draws this morning verified that suspicion. Needless to say this was an unplanned extension of his stay and Keith was not too happy to hear about it as you might expect. To be honest we weren’t either. These next few days were most likely his last break before more intense medical procedures kick into gear and we all were looking forward to this relatively quiet period to catch our collective breaths.

Seems like the ‘law’ caught up with him after his recent break-out and now he’s going to do some more time for it……

SUNDAY, JANUARY 21, 2007 10:31 PM, PST

Parent’s Note:

Keith got his platelets and red blood cells in the early Sunday morning hours and his fever finally broke as well. So today was a mostly comfortable day for Keith in his hospital room and was made more tolerable because Scott spent almost the entire day here being a buddy. Keith’s fever was absent most of the daylight hours but it is elevated once again tonight - though not nearly as high as it was when he was first admitted yesterday.

No school for Scott tomorrow, so Keith is looking forward to spending more time in his cell with his brother.

MONDAY, JANUARY 22, 2007 09:03 PM, PST

I should preface this entry by acknowledging the great nursing staff at CHO. They are kind, funny, smart and compassionate. Whatever they are paid, they deserve more. Ok, so maybe - sometimes - they are a little noisy at night....

Parent’s Note:

I seem to recall as I lay on window bench ‘bed’ in a state of semi-awareness the night shift nurse clanking around his bed. Of course this is not unusual at all. It is one of many interruptions throughout a typical night that we have come to expect as a matter of routine and the reasons for the visits include taking hourly vitals, adjusting the IV pumps and administering meds. These are the usual list of nocturnal chores.

It was the early hours of the morning and the light from the hall filled the room as the door swung open for the umpteenth time. This time she was here to draw his blood for CBC labs and cultures. I suppose it could have been 3am or 6am – neither Keith nor I could recall exactly. But what Keith was able to verbalize later is that it is really, really hard to sleep in a hospital room with all of the clinical commotion and background noise that goes on routinely. It is particularly hard when someone is lurking around your bed in the shadows collecting several vials of blood from your body. Somehow drawing blood in the daylight is ok, but at night it is sort of weird. Vampire-like. “I just couldn’t get back to sleep again after that” sighed Keith. Of course this isn’t the first time this has happened, far from it. It is just one of those interesting observations that hadn’t occurred to me to write about before.

Later, after daybreak Keith’s morning shift nurse stopped by the room and dropped the two pages of his lab results on the bedside table for me. As she turned to leave the room she proclaimed with a little too much gusto “You’ve got a lot of work to do there kiddo.” She was referring to Keith’s pathetically low white blood cell count. I suppose to be accurate I should say his pathetically undetectable white blood cell count. The deal is that he is cell-bound until he can muster at least enough white blood cells to pick a fight with a bacterium. And that could be days from now. Ugh….

Apart from the usual restless night, he enjoyed a pretty good day again. His fever departed and his brother Scott arrived with his mom in tow. The fun and gaming soon commenced and the two of them were perfectly happy sitting side by side for the next seven hours together.

I was back at the office when a contingent of ten uniformed firefighters from the Oakland Fire Department crowded into Keith’s room to say hello and pose for a picture with him. I am told this kind of thing happens quite often at 5 South – athletes, local celebs etc. visiting the kids in the oncology unit – but this is the first time Keith has enjoyed such a visit. I think he had a good time and by the end of the visit as I understand it, most of the fire fighters were up to speed with World of Warcraft thanks to Keith’s tutelage. It wouldn’t surprise me if he talked some of them into buying a copy of W.O.W. and joining him in his various heroic quests.

It sure would be one way to fill some of that empty time back at the station…..

January 13th - 17th: Escape from Childrenz

SATURDAY, JANUARY 13, 2007 10:26 PM, PST

Bold Break-Out at Bay Area Hospital

Oakland, CA

It was a brazen escape, pulled off even more amazingly in the light of mid-day. No one saw it happen and by the time administrators was alerted it was too late. Keith Kelley, a repeat patient who had been sentenced to Childrenz for his sixth cycle of chemotherapy and was to serve 5 days of hard induction in the heavily fortified 5 South unit, escaped today one day short of his release date. Kelley is accused of 'crimes against cancer cells' and seems to have no compassion what-so-ever for them. 5 South is a unit reserved for only the most hardened oncology patients and is patrolled by dozens of guards posing as doctors, nurses and PCA’s.

“This is a state-of-the-art facility. No one has ever escaped from Childrenz...until now that is” proclaimed the front desk ambassador Imin Shock. “ This incident has the potential to tarnish our unblemished reputation for never having had a patient leave our facility early.”

It is still unclear exactly how he pulled it off, but police investigators suggested Keith might have been assisted in his break-out by one or possibly two outside collaborators. A cookie container brought by acquaintances of the Kelley family in Orinda two days ago contained a nail file that was seen lying next to a ventilation grate that had been chiseled open. Other evidence at the scene included a Michigan cap and a tuft of cat fur also found near the grate, suggesting that Keith’s notorious brother and somewhat rotund cat might have been in on the caper as well.

“Everyone knows Keith’s one tough dude…..and so it’s no surprise he’s flown the coop. He’s a free bird now. I’ve always felt that no walls and no one could keep him penned up for long.” explained Dr. Cydorak who operated on him last December to remove a tumor and a couple of lead slugs from his abdomen.

Officers at the scene cautioned that he could turn up anywhere. “He should be approached with caution. Don’t let that cute little bald head fool you. This is a kid that can make an upside down smile frown. I’ve never seen anyone else who could do that.”

Mr. Shock stated that Childrenz is going to take a long hard look at their ventilation grilles so that something like this doesn’t happen again. It is possible that the unit will have to shut down temporarily to fix this problem. "In that case, when he's recaptured, we'll just have to ship him down to Packardz. That place makes Childrenz seem like spa by comparison". Packardz has been undergoing a lengthy re-construction program, including sealing up all of their ventilation grilles. "It's gonna be the new Rock" he offered, making a not so veiled comparison to the famed rock outcrop in San Francisco Bay.

Loiters Wire Service

SUNDAY, JANUARY 14, 2007 10:24 PM, PST

“I want baked beans for dessert” Keith

Parent’s Note:

Suddenly he’s eating like a horse. When we got home from the hospital yesterday the first thing he wanted was a bowl of chili. He ate two bowls. Hamburgers, fries, turkey, stuffing, coffee cake, hot cocoa, soup, toast and yes baked beans….lots of them…even for dessert.

Now we’ve been doing this chemo thing for a while now, but this is the first time that I can recall that his appetite actually improved after chemo. It's a mystery.

Go figure....

MONDAY, JANUARY 15, 2007 10:24 PM, PST

Parent’s Note:

Before reading the rest of this entry, a collective knocking on wood might be in order.

Keith is having such a smooth recovery from chemo this time it’s remarkable. He hasn’t looked green around the gills at all since arriving home on Saturday and is eating and drinking well. I would have to credit the overnight hydration system and the continued antiemetic regimen that we are sticking to as well as Keith’s own fortitude for the success so far. There’s probably a medical reason that I don’t comprehend to explain it but so far this is the easiest of all of the cycles he’s had to date. I guess we thought there would be some kind of cumulative effect making each successive cycle more difficult to tolerate.

His lab results from today look quite good in most categories and his ANC is in the 9000 range, but it should be a matter of hours from now that he spirals downward toward neutropenia. He has started GCSF (neupogen) in anticipation of the dive but it will likely take a couple of weeks of daily GCSF infusions for him to recover to ‘normal’ levels. We have noticed that this recovery time has lengthened over the course of the five previous cycles as the doctors predicted.

Sometime in the week of February 5th, he will be subjected to the full barrage of diagnostic tests to determine the status of his disease and his medical team will huddle with all of this information to lay out the plan for going forward.

But right now he looks good and feels good and that makes all of the Kelleys feel good.

___________________

Just noticed the web counter just rolled over 25,000 visits to this site. Thanks for stopping by and checking in on Keith.

TUESDAY, JANUARY 16, 2007 10:24 PM, PST

“Dad, you really need to post this recipe on the website – it’s so good” Keith upon bobbing up for air as he inhaled his dinner tonight.

Parent’s Note:

I hate to sound like a broken record, but Keith had another good day. That makes it three days straight since his brazen escape from ‘Childrenz’. It’s amazing what a good ol’ jailbreak will do for your spirits.

Since there isn’t really anything more I can think of to say about Keith other than he’s dying to get the expansion pack for WoW that has apparently ‘just shipped’, how about some really useful information.... (our motto here at the editorial department is ‘if you don’t have anything to say, add a link to a recipe….):

Penne with Pancetta and Tomato Cream Sauce

(we swapped arugula for the basil)

WEDNESDAY, JANUARY 17, 2007 09:41 PM, PST

Yep……. Uh Huh…… The pink bucket.....It’s Baaaaaaaaaaaaaaaaak.

Parent’s Note:

Okay, so maybe I was a bit overconfident. Maybe I should have started last night’s entry out with a “knock on wood” invocation. Maybe I thought Keith was going to catch a break finally.

Almost as soon as soon as last night’s entry was posted, Keith started to feel, well….. the way you would expect to feel after having poison injected into your body for 72 hours straight. It’s nothing he can’t manage, but it’s no fun at all.

Add to that, our one lane street is being ripped up to replace a sewer main so in spite of the USPS’s claim that “neither rain nor snow, nor sleet, nor dark of night shall stay these couriers from their appointed rounds” the mail wasn’t delivered today. I suppose sleet combined with road construction isn’t an impediment listed by mail couriers as necessary to overcome. So guess who was expecting to get guess what today (hint: rhymes with NoW)…..and guess what didn’t arrive….

We are confident tomorrow will be a better day.

January 9th - 12th: Chemo Cycle #6 - Scott Lends a Hand (and an Arm)

TUESDAY, JANUARY 09, 2007 08:31 PM, PST

“Ok, so if something bad is going to happen to me, give me at least 2 days advance notice so I can plan my activities” Keith’s admonition to his parents

Parent's Note:

This statement was precipitated by a somewhat frank conversation with Keith discussing what activities would most likely happen in the coming weeks and months. We have been careful to be honest with him yet trying not to overwhelm him with too much information. A one-day-at-a-time approach if you will. I have to admit I laughed out loud upon hearing this gem, but later I was taken with mixed emotions of both sadness and admiration that someone so young should have to think in such terms and yet has the ability to express his feelings so maturely. I guess we will need to shift to a two-day-at-a-time approach from here on.

As advertised, Keith and Josie headed off to Children’s mid-morning and knocked off a string of appointments. The first was with Dr. Sydorak, his abdominal surgeon, who praised Keith’s recovery from his tumor removal as nearly an A+ effort. Later he provided blood samples for genetic testing and had a heart echo scan. For dessert he was admitted to 5 South to begin hydration and his next chemo cycle. Gee, what a fun day. Still all indications were that he was chipper pretty much the whole day.

Scott had a big day as well. I picked him up after school and we drove to Children’s to visit Keith. But before we went upstairs, we checked in at the oncology clinic where Scott bared his arm and provided three vials of blood to be sent along with Keith’s to Stanford to determine if he is a possible bone marrow match. It seems after all of Keith’s stem cell harvest attempts (three), there are just enough cells to perform a single transplant, but no back-up supply in case a second rescue procedure is needed. Interestingly there is only a 25% chance that the two are a genetic match. Apparently for parents and relatives the percentages plummet to very small numbers. It would be wonderful to have the safety net of a match, but we aren’t counting on it.

In our house, Scott has earned an honor bead for offering himself, literally, in any way he can to help his brother.

WEDNESDAY, JANUARY 10, 2007 08:44 PM, PST

Parent’s Note:

Keith spent a relatively quiet day in his hospital room except for one excursion across the street to have another audiology test performed. One of the possible side effects of his aggressive chemo regimen is that it can lead to hearing loss, hence the frequent testing. So far he still seems to be hearing just fine (….ok, my take is that not having a thick matt of hair covering his ears probably doesn’t hurt either).

Around mid-day he returned to his room, the IV tubing was rigged up and the three-day chemo drip commenced. The only other event of note actually just occurred as I was writing this entry. Keith was a not-too-happy recipient of a finger prick glucose test. Seems he had been consuming mostly sugary foods all day and the doctors busted him. The decree went out - no more pop tarts for the rest of the night.

Fortunately his finger is not seriously disabled, allowing him to resume his laptop gaming with unfettered gusto....

THURSDAY, JANUARY 11, 2007 11:07 PM, PST

Parent’s Note:

Keith is about half way through the last of his six conditioning cycles of chemotherapy now. This is a repeat of the Cytoxin / Doxorubicin / Vincristine combo that he has received three times before and he has been tolerating it so far.

These are always hard days. Hard because the chemo and antiemetics take their toll on Keith’s energy and mood, hard because family is separated and hard because, let’s face it, the hospital just isn’t a fun place to be despite the best efforts of the medical staff. He was feeling a bit melancholy today, not able to see Scott and of course he misses Kirby and his friends.

We have known from day one that there is no easy course to a cure and we are ready to endure whatever our doctors recommend as the best path to beat back this terrible disease. Still, after all that Keith has been through so far, indications are that the most challenging days probably lie ahead of us. So as that time nears, we find ourselves torn with emotion yet grateful for all of the support we have been given and thankful that research and advances in medicine have allowed us the opportunity to step forward with hope and firm optimism.

He should finish up this cycle mid-day on Saturday so with a home hydration set-up and any luck Keith will be back to Kirbyville 94563 that same evening.

FRIDAY, JANUARY 12, 2007 09:44 PM, PST

Parent’s Note:

The highlight of the day for Keith was having Scott visit after school. Keith was a bit tired from the medication but enjoyed watching his brother play WoW. I’ve posted a couple of photos to the album from today.

About 14 hours left of induction as this entry is written and the plan is still holding for a Saturday escape. Keith gets a bit ornery when the nurses give him his Benadryl / Reglin combo because it knocks him out right away and he’s asleep for hours. He was particularly unhappy to hear that the afternoon dose was going to be administered just before Scott was due to arrive at the hospital, so we talked the doctor into giving it to him early. Keith got his Benadryl ‘nap’ in before Scott arrived so disaster averted. The anti-nausea drugs are doing their job so far, so no complaints from me.

The pink bucket is nowhere to be seen.