Tuesday, February 27, 2007

February 27th - March 6th: All Systems Are Go...

TUESDAY, FEBRUARY 27, 2007 11:56 PM, PST

Interesting how we’ve all become accustom to the immediacy of the internet. Last night I was without such a connection so wasn’t able to post this entry at the usual evening time slot, so here it is – posted from an internet enabled location, albeit 12 hours delayed.

Parent’s Note:

Keith is settled into his room in what is referred to as Two North, the BMT unit at Lucile Packard. It was a long day starting with the usual routine measurements taken at the clinic at 10am – height, weight, lab draws etc. Next Keith had a couple of chest x-rays just to make sure everything was where it was supposed to be I suppose. We were then given a hall pass to leave and return at 2 so we headed out to find some lunch ‘off campus’ (ie: at the Stanford Shopping Center). Keith enjoyed a crab cake sandwich, a pile of fried onions and a huge turtle sundae, declaring his lunch selections to be quite worthy.

Back to Packard at the appointed hour, we met with Keith’s physicians to go over any questions and then signed the consents. This was the first time Keith in all of our treatment so far was asked to sign the consent as well. He very carefully read every word, seemed satisfied, and penned his name in the appropriate blank.

Keith was scheduled to be admitted and taken up to the room next, but it turned out that the room wasn’t going to be available until sometime after 6. So again we grabbed our hall pass and escaped with Keith in tow, this time exploring a small museum and zoo in Palo Alto and later stopping by Border’s to buy some “Get Fuzzy” comic books for Keith’s entertainment in the room. We wound up having dinner at an Italian café of Keith’s choosing along University Ave and again Keith really enjoyed his pasta selection, calling it ‘magnificent’.

Back to the hospital around 7 to find out the room was still not available, but by 8:30 we were finally in the room. So despite the delays, we had a great day with Keith and enjoyed some quality time with him. He was fun to be with, never complaining or sulking about what might lie ahead. He’s been very much living in the present and that seems to be working for him.

When I left him with Josie at around 10:30pm he was comfortable and as happy as one can be given the situation. He should be given hydration overnight along with a couple of other medications in preparation for his first day of induction on Wednesday.

Meanwhile, Scott, along with Annie and Don are holding down the fort in Orinda and they all seem to be functioning very well. I think the logistics will work out well for the next couple of weeks.

All systems are go.


Parent’s Note: Day -7

After a slow start yesterday, things have “kicked up another notch” to use an over used Food Network celeb’s catchphrase. No more wasting time, it’s down to business here. Keith started the first of four consecutive days of high dose chemotherapy today promptly at 9am this morning after a lightning quick hydration period (by our standards). I’ll get into more of that in a bit.

First of all, we’ve had to learn some new conventions – things aren’t necessarily done the same way here as at Children’s Oakland. Nomenclature terms to assimilate: This is “Day -7” (minus 7) to the “PBSC” (peripheral blood stem cell) infusion (ie: the transplant). That establishes the actual transplant date as next Wednesday, or “Day 0. Yesterday was “Day -8” and tomorrow will be “Day -6”, you get the picture. After the transplant, the days are referred to as +1, +2 etc. There are other small differences: different dressing change techniques, different lumen caps (the ends of his 2 central lines from which labs are drawn and IV fluids are given), different names for some of the same drugs he has been receiving etc. Nothing really major, but we’ve become so used to doing things a certain way that we find ourselves second-guessing ourselves a lot.

So back to his current chemotherapy induction. He’s receiving three drugs this time around: Melphalan, Carboplatin and Etoposide. Two of the three are the same or similar to drugs he has had before (Carboplatin & Etoposide). Melphalan is a new drug for him, and from what we have gleaned from the physicians, it’s the big gun. Many cancers, but particularly neuroblastoma tends to become resistant to drugs quickly, so they are much less effective after repeated use. The idea of holding back and ‘surprising’ any lingering neuroblastoma cells with a new toxin is key. At the high levels he is being given, the objective is to completely rid the body of all remaining tumor cells. (I have to admit, at first I confused Melphalan with the common garden pesticide Malathion, although I suspect they have their nasty similarities when ingested….This is also why I’m not a doctor…).

He will complete this chemo cycle on Saturday and then will “rest” until Wednesday, the day he gets his own stem cells back. More on that some other time.

As for the rest of the day, Keith entertained a nearly constant stream people through his room – lots of medical team members of course, a couple of therapists (dietary & physical), the school director, his social worker, two singing ensembles from nearby schools, along with a few familiar faces. He’s pretty wiped out right now but he had a good day overall and we are very proud of how well he handled himself in front of so many strangers – he was polite & engaging which, sorry to say, is not necessarily his strong suit. Under the circumstances he held up very well.

His room is actually quite nice, and that is a great relief given how long he will be in here. It is immediately across from the nurses’ station, but an air-lock vestibule prevents most of the outside noise from getting into the room. The usual complement of medical electronics and gadgets adorn the room, but we’ve added a few ourselves. The list of electronic entertainment includes the usual wall-mounted TV, but there is a built in DVD player so he can watch movies of his choosing if he feels like it. We also brought his GameCube console at the recommendation of his social worker from home and it is now plugged in and operational so he can play some of his favorite video games like Kirby’s Air Ride (no kidding, there is a Japanese cartoon character named Kirby, so of course Keith likes it a lot). There’s also his laptop computer and his hand held game device as well. So he’s about as well stocked entertainment-wise as one could hope to be. Still, he’s also been enjoying reading many of the books brought from home and we have a few more traditional ‘analog’ types of entertainment that should keep him (and us) sane for a while.

As he was falling asleep tonight, in a rare moment of fragility, he asked for one of his favorite stuffed animals. We brought several of them with us only to have them banished to the vestibule outside of the room for not being hygienic enough. Mind you they endured an hour in the dryer on high and were sealed in a plastic bag before we left home – I think whatever might have been lurking in them is long gone now. Anyway, there seems to be a difference of opinion amongst the staff – the day shift seems to say no, the night shift is more lenient, and agreed it was better to ask for forgiveness in the morning than to see Keith upset during their shift. A small but important victory. So he is now quietly sleeping with Moon Bunny, his first and oldest stuffy friend, at his side just as he has been for the better part of the last ten years.

Tomorrow we are going to try and butter up the staff for a feather mattress on Keith’s bed……

THURSDAY, MARCH 01, 2007 10:23 PM, PST

Parent’s Note: Day –6

I’m not sure if someone or something is trying to communicate with us, but there have been two recent natural phenomena that seem to require some mention. First, on Wednesday morning as I was driving back from Palo Alto to San Francisco along Interstate 280, after admitting Keith only 12 hours earlier, I witnessed an amazing rainbow. It was one of those double, full arc types set against a dramatically dark and ominous sky. Coincidently, it also happened to be one of the most scenic sections of the interstate, paralleling the San Andreas rift zone, and the rainbow actually appeared to straddle the valley and the fault itself. No question it was beautiful and it took all of my attention to keep the car moving, let alone in a straight line – I just wanted to stop right there in the middle of the freeway and admire it. Of course, it didn’t take long before the visage faded and I was navigating through an extremely heavy squall, again requiring my full attention, but in a different way. Then, nearly as quickly I was in the clear on the opposite side of the storm and to my surprise yet another rainbow appeared, only this time against a white cumulonimbus backdrop.

The second experience happened just a few minutes ago as I was sitting down in the kitchen with Ann, Don and Scott to start this entry, forcing me to rethink this entire entry. A significant earthquake rattled the house for 5 or 6 seconds. It appears that it was a magnitude 4.2, which by USGS standards is a ‘light’ earthquake. What makes this one significant is how close the epicenter was to us – only a few miles away, making it ‘feel’ very much stronger and it really did wake us up if not shake us up. Tonight's Earthquake and Intensity Map (our house is right where the red star is on the map) No damage, excluding our nerves.

Anyway, I have formulated my own interpretation of these events and I will leave it to you to formulate your own if you so choose.


Last night I spent a mostly restful night with Keith - as restful as it could be with frequent nurse visits. Keith woke up this morning feeling well and surprisingly full of vigor, and enjoyed a decent breakfast comprised of hash brown potatoes and hot chocolate. He remained chipper and chatty for most of the morning, then had a mid-day sinker, only to rebound later after a nap to enjoy the late afternoon and evening, calling Scott (now officially 14 years old) a couple of times to encourage him to get ‘online’ and play with him. The lead BMT nurse who has cared for kids like Keith for some 20 years was amazed that he was feeling as good as he was, saying she had never seen a kid do as well this far into such a strong chemo cycle.

On the entertainment front, yesterday it was singers, today it was the winner of “Survivor, Cook Island”, Yul Kwon, who made an appearance and chatted with Keith for a while. Alas, I wasn’t around to witness it and I must confess that I lost interest in “Survivor” after about the sixth season. So I never followed Yul’s island pursuits, but it’s still pretty cool that he stopped by to cheer up Keith …..Survivor Cook Island winner

Lastly, for those who wondered what Keith’s stuffy friend Moon Bunny looks like, here he “mint in box” as he probably appeared about 10 years ago when Keith first befriended him. Moon Bunny


Oh, the day shift gave the nod to let Moon Bunny stay in the room.... makes me wonder if there is some connection between that and how good he is feeling right now.....

FRIDAY, MARCH 02, 2007 09:32 PM, PST

Parent’s Note: Day -5

What a trooper.

Keith put in another hard day at the office but has been able to stave off feeling really lousy to this point with just a few sinking moments. The doctors and nurses all say he is doing really well. That said, it is clearly getting harder and more difficult for him. He’s really not eating much, is sleeping more and is starting to feel ‘weird’ as he puts it. I suppose at some point all of the chemo-toxins he’s getting will overtake him – at least that is what is predicted.

We did open and play a new board game in the room today: Cat-opoly. Yep, it’s Monopoly re-tooled around a feline theme, and boy did he enjoy moving his cat food can shaped game token around the board collecting all of the different cat ‘properties’.

After the last couple of days of visits by entertainers, I was half expecting the circus to roll through here today but it was quiet for the most part. A “Survivor – Cook Island” bandana now hangs on the wall of Keith’s room from yesterday’s visit. It is inscribed as follows:


It was awesome meeting you. I’m glad I played Survivor rather than going up against you in Warcraft and getting my butt kicked. Best of luck and get better soon!

Yul Kwon

SATURDAY, MARCH 3, 2007 11:34 PM, PST

Parent’s Note: Day -4

Scott and I are spending the night at a cottage in Portola Valley, near Palo Alto. Josie is spending the night with Keith at Lucile Packard. Annie and Don are spending the night with Kirby in Orinda. Are we messed up or what? Seriously, having access to this cottage is a huge help for us, relieving us of long drives back and forth every day and we owe thanks to a very generous family here.

Only 4 days left to the transplant and Keith is still hanging in there. To my eye he seems about the same as yesterday – mostly comfortable with intermittent sinking spells. Still it’s remarkable given how much nasty stuff has been pumped into him. The doctors continue to be impressed and amazed. He’s been receiving continuous chemo for the past 3.5 days and will finish his fourth and final day Sunday morning. On this last day of chemo the protocol calls for only Carboplatin and Etoposide, no Melphalan, so he’s already catching a bit of a break.

What follows might sound a bit clinical so apologies in advance. I just think it is useful for everyone to know what is going on and coming up. Here is the countdown schedule to the transplant:

Sunday, Day minus 3: Rest
Monday, Day minus 2: Rest and discontinue his antibiotics
Tuesday, Day minus 1: Rest
Wednesday, Day 0: Transplant day.

This current and final chemotherapy cycle is designed to rid him of any remaining tumor cells while also making room inside his bones for new blood making cells to re-engraft. The doctors likened this to clearing a field of all weeds and plants down to bare soil so that the new seeds that are planted have the best chance of growing. His stem cells are the seeds and the GCSF is the fertilizer so to speak. Because this is such a high dose cycle, the side effects will be amplified and he will most likely not feel very well for quite a while.

Keith has been receiving his antibiotics through IV infusion for the last few days, which to his relief means he doesn’t have to swallow a bunch of pills. Sometimes just the thought of swallowing a pill can set him in to a tailspin so this has been a great help to him. What is interesting and somewhat non-intuitive is that he will need to stop taking antibiotics soon because of their propensity to depress bone marrow function - this just when he probably needs antibiotics the most because of a lack of any functioning immune system. I suppose he will get some sort of antibiotic treatment if he does develop a fever or infection (and we hear it is inevitable), but it sounds like when this happens it might prolong the time it takes for his stem cells to take hold and start producing blood products again.

What happens on transplant day is actually relatively easy. The three separate stem cell harvests that have been collected from his own blood and marrow over the past few months will be thawed and infused back into him in much the same way as he has received so many transfusions – painlessly through his central line. He will then start GCSF to encourage white blood cell growth again. At best it could take a couple of weeks just to begin to see some sort of response suggesting engraftment. It will take much, much longer before he has anything approaching a functioning immune system.

So far everything seems to be tracking as planned if not better than planned. Our plan, and we’re sticking to it, is to keep it that way.

SUNDAY, MARCH 04, 2007 10:03 PM, PST

“Can I try some of that pasta?”

“Mmmm. Can I have some more?”

“That pasta is really good.

The sauce is divine.”

“Can I have some more? I feel my appetite coming back.”

“You need to get some more of this…”

Keith, reminding us how much good food means to him.

Parent’s Note: Day –3

Only three days to transplant. Today Keith finished his fourth and final day of his seventh and final planned cycle of chemo, a big milestone to be sure. He is still getting IV fluids, but it’s nice to get all of those ominous biohazard bags out of the room and it’s a big relief to finally realize that chemo is behind us even though he will surely feel worse before he starts to feels better again.

Josie took the opportunity to escape from the room soon after Scott and I arrived this morning. She headed off on foot to the nearby Andronico’s market (for those of you not familiar with this brand, think Whole Foods +.” While she was out, Keith unfortunately had his first and only episode of nausea so far, which led to a request for Benadryl to calm his stomach. Benadryl is an automatic sleep inducer for Keith and sure enough it was lights-out for nearly two hours. Keith awoke looking much better and soon realized that Josie had returned with a small tub of prepared pasta and he asked to try it. It was a thin noodle pasta with artichokes in a lemon cream sauce and beginning with the first bite it seemed to transform Keith from weak and weary to spry and spirited. We were all amazed at its apparent rejuvenating powers.

Buoyed by his new found strength, he asked if anyone wanted to join him in a “rousing game of Cat-opoly” to use his words. So the four of us set up the board game on the tray table over his bed and within an hour or so it became clearly apparent who was to emerge as the dominating force – Keith. He was soon to become the hands down the winner, developing his cat properties with litter-box houses and fish bone hotels. One by one his would-be challengers faded away as his money stack grew and grew, stuffing more artichoke pasta into his mouth between turns. It was good to see him enjoying himself as well as nourishing himself.

Around 5pm, after Scott and I left for Orinda, Josie and Keith left the confines of the room to explore the roof garden above LPCH. The two of them along with the IV pole headed up the elevator to the roof and into the great outdoors for a while. I think Keith was somewhat reluctant to go at first, but really enjoyed it once he was there – lots of trees, flowering plants and hidden benches. Keith lay his head on Josie’s lap for twenty minutes or so, watching the afternoon clouds watch him. Back in the room, he seemed physically spent and soon he cozied up in bed with another dose of Benadryl.

Before he fell asleep, he must have reflected on the day to Josie and how it felt to actually enjoy food again uttering this little gem:

“What I could really use is a big pot of beef bourguignon”

“Uh, not that I could really eat it.”

MONDAY, MARCH 05, 2007 09:12 PM, PST

Parent’s Note: Day -2

Today was a scheduled rest day for Keith and that’s just what he did. He didn’t really feel like doing much else - not much in the way of food intake nor activities, just a few DVD movies and lots of sleep. He had a bright moment or two but they were few and far between as the chemo seems to be having its expected effect. Still the doctors say he is tracking right on course so our plan is still intact.

He is now off the IV antibiotics, but in their place he has started IV nutrition that will go on for some time until he is ready and able to eat normally again (I figure because we have an IV pole here in the room it needs to be used for something). If Keith had the build of a linebacker he could afford to lose a few pounds and not think much of it, but unfortunately we didn’t bless him with those genes and he doesn’t have a lot of spare pounds to give away. In a couple of days we expect his blood counts and ANC will plummet and we will need to begin observing the protocols for a very sterile environment. He will be restricted from leaving his room and will need to move to a low microbial diet (if he feels like eating at all). The days of feasting from Andronico’s deli section will need to be put on hold for a while.

His plight reminds me of the story of Tantalus – forced to stand in a pool of refreshing water with low hanging fruit above condemned never to be able to enjoy the pleasures of either. Similarly, Keith is so near good food and will not be able partake. Fiendish punishment if you ask me for someone who enjoys food so much. And what did he do to deserve it? Tantalus boiled up his own kids and served them to the Gods so he sort of deserved his punishment.

I’m not aware of anything Keith has done that is quite so egregious……

TUESDAY, MARCH 06, 2007 09:03 PM, PST

Parent’s Note: Day -1

Keith slept through the night restfully but went through a pretty rough spot in the morning. The chemo appears to be doing its work but that doesn’t mean it feels good at all. His IV rig has now been customized to incorporate a pain-med pump that he can control with a press of a button, so when he needs some pain relief he can do something about it for himself. The good news is that he seems to rebound after mid-day and that’s just what he did again today. Even though his energy level is pretty low, he managed to take one last jaunt outside his room before he is sentenced to room confinement for the next month or so.

During the ups of his ups and downs, Keith continues to enjoying watching DVDs, reading (and being read to), and playing board games. He especially looks forward to visits by the child life specialist, Kristin, who helps take his mind away from being in a hospital room by playing games and offering other fun distractions.

Tomorrow (Wednesday) is the big day, the day he, along with our entire family of medical professionals has been working so hard for.

Day zero.

The transplant.

Wednesday, February 21, 2007

February 21st - 26th: "I Really Don't Like Wednesdays."


Parent’s Note:

When Keith got out of bed this morning the first thing he did (after donning his red bathrobe) was to sidle out to the family room where Josie was enjoying her morning coffee along with the rest of us. He declared his wish that she have a happy birthday in a clear, loud voice, and gave her a protracted hug. Of all the birthday wishes she received, this one had to be the most special. Not a bad way to start the day when you're the birthday mom.

Josie had planned to enjoy a birthday lunch with a friend, but instead the day spiraled out of control becoming one of those reminders that there are few certainties in life, especially when it comes to medical treatment. She picked up the call from Children’s Hospital just as she was heading out the door. It seems that one of the pulmonary function tests Keith had performed last week would need to be repeated.

“Could Keith come in on Thursday?”

Realizing that Keith would be disappointed, Josie replied that it would be ok if it was absolutely necessary.

“And even though his hemoglobin is at 10 now, we want it to be higher for the test. So we need you to come in for a transfusion today. Can you come in right now?”

Sigh…. Josie tried to explain that this was kind of short notice and she had plans today but it didn’t take much more discussion before she resigned to the reality that her birthday lunch plans would just have to wait for another day.


Keith and Josie got themselves to the hospital, but there was no room at the inn, so to speak. The day clinic was completely full and they were directed to the inpatient center across the street. After many visits, we have observed that everything takes much longer in an inpatient setting, so what would have been a 3-hour visit to the clinic became a 6-hour visit to the inpatient center.

Apparently word that it was Josie’s birthday spread through the hospital and many familiar faces from the nursing staff stopped by the room to wish Josie well. Later in the afternoon I stopped by the room where Keith was keeping himself occupied with his laptop computer. At one point Keith said “I really don’t like Wednesdays. I’ve always had a grudge for Wednesdays.” I wasn’t sure that I really wanted to pursue this topic much further but I asked him why he felt that way. “Because bad things always seem to happen on Wednesdays.”

Sure enough, in looking back at the journal he was right. August 9, 2006 was a Wednesday. It was the worst possible day, the day he was first admitted to Children’s and began a series of scary tests that confirmed something was very wrong with Keith. A week later, August 16th was also a Wednesday – the day he developed acute respiratory distress syndrome following his first course of chemotherapy and was transferred to the pediatric ICU – we came very close to losing him that night. The first Wednesday in January he underwent bone marrow harvest surgery and now the surprise and disappointment of today’s news. Sure, he’s had plenty of good Wednesdays as well, but interesting he would make the observation.

He finally got his transfusion and by 6:30pm they were home again where we celebrated Josie’s birthday with Bo’s barbeque and home made pie.

So a good start and a good finish to a day that otherwise followed course of its own.


Parent’s Note:

Keith made another appearance today at Children’s Hospital to re-take one of the pulmonary function tests. Apparently the doctors down at Lucile Packard didn’t like the results from the first effort. So armed with a full complement of red blood cells and his hemoglobin up to 11.9 he tried again. This time he literally ‘blew away’ his previous results, making the respiratory therapist quite happy. Our assumption is that the doctors at Lucile Packard will be quite happy too.

Speaking of happy doctors at Lucile Packard, Dr. Twist reviewed Keith’s latest MIBG scans and word is that she was exactly that – quite happy with what the images show.

Has anyone noticed the visitor count on this website has crossed 30,000 visits.

Wow. (not to be confused with WoW) -_-

FRIDAY, FEBRUARY 23, 2007 10:12 PM, PST

Parent’s Note:

A fine day by Keith’s standards. No medical anything. Just some quiet time mixed in with a little schoolwork and a trip to the ice cream parlor for a custom sundae (we’ll call it “The Keithanator”): vanilla and chocolate marble swirl with hot fudge, malt and a cherry.

Keith has gained some much-needed weight lately, thanks to a good appetite (including sundaes) and a reprieve from chemo. Amazingly, he has recovered to the weight he was about a year ago, and while that might not sound impressive, when you consider all he and his body have been through it actually is.

On the downside, he now has lost some high frequency hearing most likely due to the chemotherapy. He cannot hear the sound of the electronic “beep-beep-beep” of the digital thermometer when it alarms a few inches from his ears. Thankfully his normal hearing range seems to be unaffected and hopefully it won’t worsen with time.

In the big picture of things it seems pretty minor.


Parent’s Note:

Keith enjoyed a mostly quiet day today. The one exception being that we ventured to Oakland to enjoy dinner with our friends Pam and Bob. To say Pam is a great cook is a classic understatement and tonight we were treated to crab cakes and an amazing bouillabaisse. Keith really enjoyed the crab cakes and made a valiant attempt to consume the bouillabaisse even though he had a hard time eating some of sea life he has come to recognize as his friends. To the rest of us it was absolutely amazing.

Rain is forecast for the next several days so I suspect we will remain close to home between now and Tuesday when Keith is admitted to Lucile Packard Children’s Hospital. He is feeling great now and we are enjoying it while it lasts.

SUNDAY, FEBRUARY 25, 2007 10:37 PM, PST

Parent’s Note:

Keith gets to enjoy one more day at home before he must say goodbye to Kirby and relocate to Palo Alto for his autologous bone marrow transplant. After he is admitted on Tuesday it will probably be at least two months before he can return to Orinda and once again stroke Kirby’s fur and crawl into his own bed. So for us it is a bittersweet moment knowing that this will be a very long and difficult period for Keith (and all of us). At the same time we are looking forward to it because it is this procedure, despite its risks and unpleasantness offers the best chance to eliminate his cancer once and for all.

Later in the week I’ll try to share with everyone more of the details of the procedure as we know them. In preparation for the transplant we have been collecting all the things we will need to make Keith’s life as enjoyable as it can be – photos of Kirby, games, books and favorite things of all sorts. Everything that enters Keith’s room will need to be ‘clean’ (germ free) because his immune system will be completely out of commission for a very long period of time. Because keeping him in a germ-free environment is important to his recovery there will be restrictions on what actually enters his room – from food to people. He will essentially be isolated in his positive pressured, HEPA filtered room for 30 days minimum without being able to step a foot outside the room.

We think we have sorted out the major logistical issues of the next month. Josie and I will trade off staying with Keith days and nights. We are fortunate to have found a small garden apartment in Portola Valley where the other parent can spend the night when needed. As for Scott, he will be able to visit Keith on the weekends while he stays in Orinda with his grandparents while they are with us for a couple more weeks.


In other news, Scott just turned 14!. Ok, well his actual birthday isn’t for a few more days, but given our situation we thought it best to celebrate it today while we were all under one roof.



MONDAY, FEBRUARY 26, 2007 08:37 PM, PST

Parent’s Note:

Keith is in a very good mindset right now (as has been the case all along) and realizes this is the last night at home for a while. He has a great way of partitioning himself from things that are unpleasant and he tends to live in the present, very much enjoying himself when he feels ok like he did tonight and over the past few weeks. Tonight we brought home Indian food, one of Keith’s favorites, and he enjoyed mopping up the Tika Masala sauce with his nan bread while uttering the 'mmmmmm' sound.

We very much appreciate all of your thoughts and prayers as Keith heads to Stanford to start his BMT. We’ve done everything we can think of to prepare for this venture and we are as ready as we can and ever will be.

Friday, February 16, 2007

February 16th - 20th: Rodent Trap Magazine

FRIDAY, FEBRUARY 16, 2007 10:26 PM, PST

Parent’s Note:

Josie and I had a good meeting with Kenneth Weinberg, director of the Bone Marrow Transplant program at Lucile Packard Children’s Hospital today. We covered a lot of information in the two plus hours that our meeting lasted, and now have a better idea of the procedure including the various side effects and the possible risks with an undertaking of this type. Because we haven’t had a chance to talk in depth with Keith about all that we learned today I will leave the details for another day. We do know that Keith is scheduled for admittance on the 27th of February so he gets to enjoy another week of freedom. The actual transplant will occur after high dose chemotherapy some eight days later. There is no mistaking this will be challenging undertaking, but it is what must be done.

While we were getting educated, Keith was getting exercised. He, along with Scott and Annie took advantage of the 70-degree temperature and clear skies to get in a good walk around the neighborhood. Annie relayed a funny exchange with Keith as he was putting on his shoes, sweatshirt and knit cap before leaving the house. Apparently Keith likes to pull his cap way down so that it essentially covers his eyes.

Annie: “Oh, don’t pull down your hat so far. It must be hard to see.”
Keith: “I like it this way.”
Annie: “Keith, you have such beautiful eyes.”
Keith: “That’s what they all say.”

I forgot to mention that Keith received a large collection of Valentines from all of his classmates at school, many offering words of encouragement for him. I watched him for some time as he reached into the large heart shaped envelope and pulled out one after another, reading the inscriptions of each. I could tell that it meant a lot to him so thank you to everyone who took the time to send him Valentine cheer.

Since tomorrow is expected to be another good weather day, maybe we will drive to Mount Diablo and climb a few of those rocks we weren't able to do last weekend because of the rain.


Parent’s Note:

Another beautiful day here in northern California – very spring-like. So after poking around the house all morning we finally got organized and caravanned up to Rock City on nearby Mount Diablo with the idea of scampering around on the sandstone rock formations and checking out the cool eroded wind caves. We clearly weren’t the only ones with this idea as the area was literally crawling with people out enjoying the weather and scenery along with us.

No problem, lots of rocks to go around. We secured Keith’s lumens beneath his shirt (to avoid any unpleasant accidental snag) and off he went up the first outcrop with Scott. If you haven’t explored this area, you don’t suffer from vertigo, and you are within reasonable driving distance it’s worth a visit.

After getting our fill of rock scrambling and after Keith got some solid leg exercise in we located a picnic table and broke out some well-deserved refreshments. Keith didn't need to call into service even one platelet from his prodigious reserves (to our collective relief). Somehow we got around to talking about Scott’s upcoming 14th birthday and what might possibly be on his wish list.

Annie: “So Scott, any ideas for us?”
Scott: “I’m not sure.”
Josie: “You know, if you don’t let us know, you might wind up with socks or something like that.”
Scott: “Right, I guess I could come up with some ideas then.”
Steve: “You know, when I was fourteen, I wanted a subscription to Road and Track magazine.”

Pause. Scott looked a little mystified.

“Rodent Trap magazine – what’s that?”


SUNDAY, FEBRUARY 18, 2007 09:07 PM, PST

Parent’s Note:

Keith had a terrific day.

That’s about it. No great adventures, no particularly unique experiences. Just a day being a kid, feeling well, spent entirely with his big brother, with lots of laughter originating from each.

Does it get much better than that?

MONDAY, FEBRUARY 19, 2007 09:42 PM, PST

Parent’s Note:

Sorry to sound like a broken record, but Keith had another fun and carefree day and there’s no reason to believe that for the next week or so he shouldn’t continue to enjoy more days like this. Having his brother’s devoted attention today made it all that much better for him.

It is a real treat for all of us to be able to enjoy this break before Keith’s transplant begins, although I can’t help imagining that we are in the so called eye of the storm right now. Keith’s been through a whole lot but still has a ways to go before he gets to swim with the groupers at the Great Barrier Reef. So in a week or so from now - it’s safe to say - things will change a bit.

We will enjoy every minute while these days last and will catch our breath a bit before we roll up our collective sleeves and get to work again.

TUESDAY, FEBRUARY 20, 2007 09:28 PM, PST

“What? You should ask for some sort of really extravagant dinner, you know like they do in Las Vegas.” Keith offering his recommendations to his mom on the menu for her birthday dinner tomorrow night.

Parent’s Note:

So when asked if he would like to take charge and help prepare such a feast he responded “Huh? – well, maybe Bo’s barbeque would be okay.”

No question she deserves the Vegas high-roller treatment, but we may opt for a more manageable weeknight feast.

Keith feels very good again today and his lab results were solid, so chalk up another uneventful but welcome day at our house.

Friday, February 9, 2007

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….


“Sure. I really like lobsters.”


“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.


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.


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.

Saturday, February 3, 2007

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


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’.


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……


“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.


Just another day at the office for Keith.


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.