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.

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)