November 14th - 20th: Bone Marrow Harvest and Course #5

TUESDAY, NOVEMBER 14, 2006 09:51 PM, PST

Parent’s Note:

It was a busy day. Sorry, I can manage only a brief outline of the day’s events.

WAY TOO EARLY....

Alarm goes off at 3:30. AM. Ugh. You’ve got to be kidding. Forget the shower. Keith pops out of bed – no problem. What a guy. Kirby meows so long. Pile into the car. Out of the house by 4 AM. On schedule. Scott still asleep with alarm clock set for 7 am - must wake up and get to school on own. - Very dark. Hit the highway. No cars. Good. We’re rolling. Wish my daily commute was this easy.

FIRST ONES THERE...

Well almost. Wake Keith up in back seat of car. First ones to sign the patient log in sheet. 5:05 AM. “We don’t seem to have record for Keith – Who referred you? – Did you know Stanford Hospital is completely separate from Lucile Packard?” Uh, no. Ugh… Sign financial responsibility authorization. Note to self to contact insurance carrier (when they get to work in 4 hours). A record is found. Crisis averted – surgery can proceed. ID card issued. Meanwhile Keith is sleeping in the waiting room.

PRE-OP....

“Hi Keith – c’mon back, we’ll get you set up” Too cheerful for the hour. Vitals taken in exam room. Questions answered. Wrist band ID put on. “I feel like a tagged sea lion” Gown issued. “Gown? Why do I have to wear a gown?” First gown waaaay to small. Gnomish. Second gown – McDonalds happy meal characters… we think not. Third gown – neutral pattern - no style points but acceptable. On it goes. Walk into pre-op ‘holding area’. Lots of empty beds facing each other. Gee, this is different than the previous Children’s Hospital experience. Kill time reading questions from Quiz Quest 1 book. Q: Who invented the ball point pen? A: Laszlo Biro. Hmmm, maybe that will come in handy some day. Room starts to fill up with other patients. Anesthesiologist asks lots of questions. “Any loose teeth” “Oh, really, where?” Keith points them out. Keith asks “So, you mean you’re going to stick a tube down my throat with a balloon at the end? How will I breathe?” Question answered to satisfaction. Keith relaxed again. “Are you ready?” “Sure” “I’m going to give you some relaxation medicine” He gets the injection. Lights out. “See you soon Keith, we love you”. 7:30 AM - right on schedule.

SURGERY.....

Hit the cafeteria while Keith gets pelvic punctures. We got the better deal. Surgeons want at least 500ccs of marrow for transplant. Hang out in waiting room. Finally physicians arrive. Happy faces. “We got 500ccs!” Called insurance carrier. “No problem, we’ll just apply the previous authorization to this procedure” More good news.

POST-OP RECOVERY....

Josie joins Keith who is awake and ornery. Keith drinks a cup of water. “Can we go home now?” Uh, no. Room now filled with lots of moaning, groaning adults coming out of sedation. Weird. Keith didn’t get sick from the sedation. What a guy.

THE DAY HOSPITAL....

Bed – with Keith in it – rolled out of pre-op down a very, very long hallway to Lucile Packard. Get set up in a room in the Day Hospital. Plug in IV pump. Check out the TV. Food Network on channel 28 – and picture is better than at Children’s!. Keith has very large pressure bandage on his rear. Butt Pillow he calls it. “Do you need any pain medicine?” “No.” What a guy. Wait, wait, try computer, still can’t get WOW to work. Red blood cells collected as part of the harvest are separated from the stem cells. He gets his red blood cells back. Rita, the therapy dog pays another visit. Keith puts her through the paces again. He’s happy and comfortable. Time to go home. 3:30 PM.

DEPARTURE....

“See you tomorrow!” He’ll be back to have the dressings removed. Surgeon stops by to say enough stem cells were harvested to perform the transplant. Whew…

Keith now officially a Stanford University Alum. If anyone asks he has an impressive embossed card with his name on it to prove it.

What a guy.

Scott got himself up and to school - on his own.

What a guy.

WEDNESDAY, NOVEMBER 15, 2006 11:00 PM, PST

Parent’s Note:

While not as insane as yesterday, it seems there’s no rest for the weary at our house. After sending Scott off to school, Josie bravely agreed to take Keith back down to Stanford solo allowing me to catch up at the office today. At the clinic Keith had his ‘butt pillow’ dressing removed and his wounds were pronounced to be healing nicely. By noon both were back at home in Orinda with a happy and comfortable Keith and about 112 more miles on the odometer.

So with the harvest now successfully behind us, and Keith's behind now successfully unbandaged with his stem cells in the deep freeze, it’s time to think about the next cycle of chemo again. Josie called the clinic at Children’s Hospital Oakland and posed the question of how soon this might happen. “How about tomorrow?” was the response. Out of the frying pan and into the toaster oven….

Of course, Keith was heartbroken to hear this. And after what he just endured it was completely understandable. It was not easy for us to break the news to him either. Josie was instructed to draw lab samples and get them over to Quest pronto. Sometime tomorrow he will likely be admitted to 5-South to start the 24-hour creatinine clearance necessary prior to this 4-day induction.

While this may sound cruel, and frankly it is, we realize this is necessary and important to Keith's recovery. The good news is that we should be back home for a peaceful Thanksgiving if everything goes according to plan.

It also means that Keith along with his Michigan cap will be in the hospital for the big match-up between OSU and Michigan. Not the ideal setting to watch the game (assuming we can actually get it in the room) but it may be a very effective place for Keith to transmit the chemo-telepathic vibes that have led the Wolverines to their impeccable 11-0 season thus far since he will literally be ‘plugged in’ receiving Cisplatin and Etoposide.

Go Blue. Go Keith.

THURSDAY, NOVEMBER 16, 2006 10:11 PM, PST

Parent’s Note:

Keith has taken up residency for the next five days in room 5318 of Children’s 5-South unit. A fairly easy day as inpatient days go here on the oncology unit. He is currently receiving hydration and undergoing the standard creatinine clearance in order to establish the proper chemotherapy dosage. The actual chemo should begin on Friday morning some time and end four days later on Tuesday giving him a couple of days to settle his stomach before Thanksgiving.

Undoubtedly the best part of the amenity package offered here at CHO is the unhindered access to the WOW (World of Warcraft) website, allowing Keith to take the form of a Night Elf druid and play online with his brother, a Night Elf hunter, and his other Night Elf friends. He really has been enjoying this game (as do approximately 15 million other players I understand) and while I have mixed feelings about it I think it offers him an appropriate escape from some of the less pleasant aspects of his cancer therapy.

An anniversary of sorts – 100 days since our lives changed with Keith’s diagnosis of neuroblastoma.

FRIDAY, NOVEMBER 17, 2006 10:55 PM, PST

“Mine was the only egg to survive the drop” Keith describing his science activity today.

Parent’s Note:

Keith has finished the first inductions of chemo for this cycle and is now sleeping comfortably next to me after being dosed with heavy amounts of antiemetics. This course is a tough one – four days of Cisplatin and VP16. Cisplatin contains, you guessed it, platinum. Not the kind of stuff you really want sloshing around inside you for too long. The folks at Tiffany’s might be envious, but right now his little body has more heavy metal in it than a superfund site.

Scott paid Keith a visit after school and the two of them compared notes about gaming strategy and Scott shared some recent camera phone pictures of Kirby. Keith always looks forward to Scott-time and can’t seem to get enough of it.

Earlier in the day Keith joined a group activity led by a group from the science club at Cal. The project was the classic ‘egg drop’ where you try to design a protective cushion around an egg so that it will survive a drop from the ceiling to the floor unscathed and hopefully unscrambled. I listened to him explain very patiently to several people how he approached the problem and designed his solution. He enjoyed the project and had a lot of fun doing it.

The Cap….

Finally it seems there is this friendly little game of football being played in Columbus tomorrow. So you may have been wondering about The Cap. The Cap has been studying the playbook tirelessly all week. The Cap has been running chemo-telepathic scrimmages to perfect timing and maximize transmission rates. The Cap has been tapering the last couple of days so as to be in peak form come Saturday. The Cap has been seen practicing the Heisman pose à la Desmond Howard back in ‘91. The Cap will be eagerly seeking out Keith’s fuzzy head to fulfill its destiny and deliver a perfect season to the Wolverines - and to honor Bo.

Beyond that, there is not much to report from room 5318.

SATURDAY, NOVEMBER 18, 2006 08:47 PM, PST

Parent’s Note:

I’ve observed that days in chemo for us seem to follow rhythms around these three ABCs:

A dministering chemotherapy

B alancing fluids in with fluids out

C ontrolling nausea

The rest of the day is essentially spent waiting for the three ABCs to repeat again. When everything goes according to plan the days can be quite uneventful, even boring. This is when having a good distraction strategy is essential. For Keith, art and science activities, schoolwork, TV programming and computer gaming seem to fill the time well.

When things don’t go quite according to plan, as often they don’t, things get interesting. For instance, late last night Keith’s fluid balance, “B”, went out of whack for a while probably due to “A”, the Cisplatin induction. What followed was a significant amount of nurse and doctor activity to correct it before it led to a cascade of down-spiraling events. Ultimately they were able get it under control again and it didn’t lead to a problem with “C”.

Sleep is another matter. The nights generally consist of a series of naps between frequent interruptions to implement “A” and maintain “B”. These interruptions consist of nursing staff adjusting pump settings and infusing drugs to control “C” not to mention Keith needing to physically get out of bed every hour to empty his bladder.

.

Apart from the episode mentioned Keith has had as good a day as a ten year old can have in a hospital room. He has not felt sick to his stomach at all and has been pretty cheerful during the times when he is neither asleep nor 'locked-on' to his laptop playing WOW. We would be very happy if we could maintain this rhythm through the completion of this cycle on Tuesday.

.

OK, the game didn’t turn out as we had hoped but the Wolverines played very well nonetheless. The Cap tried it’s best and that is all you can ask for. (Actually I think the static on the hospital’s TV caused The Cap to misfire on at least a couple of occasions at critical junctures but that’s the way it goes….) Congratulations Bu….Bu….Bu….Buckeyes.

There, I said it.

SUNDAY, NOVEMBER 19, 2006 08:05 PM, PST

Parent’s Note:

An uneventful day. Computer gaming and sleeping were the two dominant activities on Keith's busy agenda.

The nurses just finished setting the IV rig up for his third day of VP16 / Cisplatin and there are no fewer than five bags of various fluids hanging from his IV tower. He continues to do well and feel well although he isn’t eating or drinking much at all. He has been tolerating all of the antiemetics well and the Benadryl / Reglin combo he receives several times a day usually knocks him out completely minutes after he receives it – and he just got a dose. I suspect he’s out for the count tonight and will miss Iron Chef America, his usual Sunday evening TV fare.

Good night Keith, sleep well.

MONDAY, NOVEMBER 20, 2006 10:04 PM, PST

Parent’s Note:

Of course it was less than an hour after last night’s journal was posted, describing how Keith was feeling pretty good, that he got sick to his stomach. For the remainder of the night the bucket was within arm’s reach but fortunately the night passed without any further incidents. If you notice I didn’t use the word sleep, because neither of us was really able to. Keith received almost 400ccs of fluids per hour so you can imagine how many ‘Dad, I need to pee’ interruptions there were. Hmmm.... Maybe I should make that a quiz question….

Technically Keith finished his 5th cycle at 8:30pm on Monday but he won’t earn his freedom until sometime on Tuesday. He’s had this type of chemo once before and it was a very tough one for him to get through. So I won’t sugar coat how he is feeling - he is emotionally fragile, tired, weak and not happy about being where he is right now. No meaningful food intake at all today. About the only thing he wants right now is to be out’a here. Thankfully the Benadryl did its work again, taking the edge off, allowing him to sleep through some of it.

To avoid a repeat of the last three cycles, where we arrive home only to have to return Keith to the hospital a couple of days later because we can’t seem to maintain his hydration, we are requesting an IV fluid drip for the first few nights at home to keep his hydration up and his nausea at bay.

He’s really grown a bit tired of all the medical attention and just wants to be home again. It seems like such a small request. And yet despite how near he is to finishing this cycle, the last few hours seem almost endless and are the hardest for him to get through.

Hoping he can tough it out through the night and the morning so that he can get what he so desperately wants – to be in a place where he only thing prodding his tummy is one of Kirby’s paws.

November 8th - 13th: Stem Cell Collection

WEDNESDAY, NOVEMBER 08, 2006 10:37 PM, PST

Parent’s Note:

Despite all of the white blood cells floating around in Keith’s body, the G-CSF injections could not urge enough peripheral blood stem cells to be collected yesterday to warrant returning for any additional courses of apheresis. So borrowing the words of our president following the recent mid-term elections, we will “make the necessary adjustments in our approach to meet our current challenges.” Our medical team will be granted the “flexibility they need to make adjustments necessary to stay on the offense and defeat the enemies.” Sorry – couldn’t resist.

His daily CD34 tests prior to the apheresis never reached the levels that were expected so the lack of stem cell collection was not a huge surprise. The revised plan involves getting stem cells the old fashioned way through a bone marrow harvest from his pelvis area that is scheduled for next Tuesday at Stanford. It is a procedure that is similar to the previous bone marrow biopsies that Keith has already had so the routine is familiar to him and there shouldn’t be any real surprises.

Sometimes we just wish Keith would just march in line with everyone else – but then again that’s not the Keith way.

THURSDAY, NOVEMBER 09, 2006 09:32 PM, PST

Parent’s Note:

Keith savored another day of freedom from pokes, prods and medication. Other than that no real news to report tonight so I’ve handed the keyboard over to Kirby....

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FRIDAY, NOVEMBER 10, 2006 10:56 PM, PST

Parent’s Note:

Today was a great day for Keith. There was no school today in Orinda so Scott invited one of his friends to spend the night and of course Keith was included in all of the fun-and-gaming. A late night I’m sure judging by the three motionless sleeping bags as I left for work in the morning. Later in the day Keith was invited to a friend’s house for more fun-and-games.

Since next week will be busy with trips to Stanford we are hoping to make the most of this ‘quiet before the storm’ weekend. The plan that is hatching for tomorrow involves driving into the city to have that make-up lunch at the floatie-boatie sushi restaurant in Chinatown that never happened a while back because Keith felt so ill after his chemo cycle. Should be entertaining.

Keith just composed this little ditty as he was hopping off to bed…He’s declared tomorrow Kirby Appreciation Day.

The Kirby Jingle

Meow, meow, meow, meow, meow
Meow Kirby cat
Meow, meow, meow, meow, meow
Meow fuzzy and fat

SATURDAY, NOVEMBER 11, 2006 09:47 PM, PST

“Well to be honest, I like it but I don’t think you will” Keith advising his brother Scott not to try the fish roe sushi and stick to the California Rolls instead.

Parent’s Note:

As advertised this was “Kirby Appreciation Day” and Keith made sure his feline was well fed and happy. There was even discussion of constructing an obstacle course for Kirby to negotiate to get to his food bowl until we agreed that he might not actually appreciate that too much. For Keith every day is Kirby appreciation day, it’s just that this is the ‘official’ day so to speak.

In other news, Keith spent quite a bit of time working on his schoolwork – math, science, geography and reading. You could almost see his head expand with knowledge. He’s chosen a topic for a research project as well – Garden Gnomes. Gnow that’s gnovel gnotion for a gnarrative….

We finally did make it to the ‘floatie boatie’ sushi restaurant in San Francisco although for dinner not lunch. Keith and Scott both really like this spot and tried quite a few daring items. Keith seemed rather pleased with himself for downing the fish roe and raw salmon and Scott tried and liked the unagi (sea eel). The entertainment value was obvious, but one had to scratch one’s head at the sight of a sushi restaurant in Chinatown and especially at the strangely out-of-place baklava, jello and dim sum offerings nestled next to the traditional sushi fare floating around inside of those little boats… Honestly, I wouldn’t have been surprised to see tacos and tikka masala floating by as well…. at least then they would have pretty much covered all of their ethnic bases.

Keith is looking forward to tomorrow being another day like today – as is Kirby. We can all appreciate that….

SUNDAY, NOVEMBER 12, 2006 10:45 PM, PST

Parent’s Note:

A quiet day at home (except for the noise ordinance violating leaf blower that we used to clear the roof and gutters) – no real news to report. Tomorrow’s journal entry should be more informative as we head back to Stanford again where Keith is scheduled for a physical exam prior to Tuesday’s bone marrow harvest. Also we will have a consultation meeting with a highly regarded neuroblastoma specialist, Dr. Clare Twist.

MONDAY, NOVEMBER 13, 2006 09:38 PM, PST

Parent’s Note:

We had a very interesting and informative day. I’m going to ramble on a bit here so bear with me, starting with a few observations about two excellent but very different institutions that have shared the responsibility of caring for Keith to this point.

Lucile Packard Children’s Hospital: Odd as it may sound despite the intellect, experience and reputation that LPCH offers, their facilities (at least the portions we have experienced) just don’t compare to Children’s Hospital Oakland in several important ways. Normally I would just put this aside and consider it a minor inconvenience but this is different (Liz, if you’re reading this take note…). Today was the first day after three visits that we spent any time in a room with a window in it. Clearly there is a space crunch here and they are aware of it. Rooms in the clinic are extremely small and it seems that many of the procedure rooms we have spent time in were captured from storage closets. Annoyingly, the furniture is “super down-sized” as well. We have had several consult meetings where we sit on stools sized for pre pre-schoolers. Keith referred to it as gnome furniture. C’mon, not everyone in a pediatric hospital is less than 3’ tall.

On the brighter side, construction is underway for a new cancer center and hem/onc clinic, replacing the current units. The bad news is that we won’t likely benefit from it but will suffer through the construction noise and dust during our stay(s). And from Keith’s viewpoint, albeit a somewhat narrow one, the WiFi internet system throughout the unit blocks the very site that he and his brother & friends have been obsessively playing W.O.W. On his scale of importance this particular pipeline is more important than the medical gas infrastructure. To you and me, no big deal, but to him being captive in a hospital with no W.O.W. is as painful as enduring another course of chemo (wink…)

Children’s Hospital Oakland by comparison offers single bed rooms to oncology and BMT patients, with the objective of reducing the possibility of exposure to infection agents while the patient is immuno-compromised and the entire oncology unit itself is positive pressurized with HEPA filtration meaning that a patient can leave their room and walk the halls of the unit to the light-filled play room. And their WiFi doesn’t block his favorite site. Oh, and it’s only 15 minutes from our home. The drive back from Stanford today was a 2-hour crawl in rush hour traffic. We will face a significant challenge trying to maintain any semblance of family normalcy with that sort of commute and we may need to look at temporary housing near Stanford in the future.

Now after reading this you might thing our priorities are completely twisted. Facilities and comfort have no part in deciding what is the best course of treatment. But there may be more to it than what appears on the surface. I believe that the human spirit plays an important role in healing and as such comfort, security, maintaining a sense of control, a connection with the outside world, facilitating and supporting a sense of family and friends are very important factors in well-being and recovery as a complement to necessary clinical treatment. Physical environments have a great impact on the human condition. I feel especially so from the vantage point of a pediatric patient.

So CHO gets the nod from us for family friendly, patient friendly facilities. Still, despite the physical flaws, and despite the distance we will need to travel for care, and despite the strain we will face as a family our hearts and minds are leaning toward transferring Keith’s care to Lucile Packard.

We first met with Dr. Rajni Agarwal, the physician who will perform Keith’s bone marrow harvest in the morning. She spent quite a bit of time with us, explaining the procedure as similar to the previous bone marrow aspirations that Keith has endured. But because it is a longer procedure and the objective is to harvest a considerable amount of the pelvic marrow Keith will feel quite sore afterward. The surgery is scheduled for 7:30 am. Show up at, ahem, 5:30 am. Leave the house at, aarrgh..gasp, 4:00 am.

Later our meeting with Clare Twist, a neuroblastoma specialist, was informative and eye-opening. In fact, Josie pointed out later that Keith really hung on to Dr. Twist’s every word; she was the first physician that completely engaged his attention. She didn’t speak down to him and cut right to the chase. Instead of feeling anxiety, Keith seemed satisfied and confident because he was a part of the conversation – maybe it’s a control thing.

Clearly we have a lot to think about and some important decisions need to be made in the near future.

It was great to come home to a meal prepared by one of our friends. It is nights like this one that make us really appreciate the kindness and nourishment of all of you have sent our way. Thanks so much.

November 1st - 7th: The Leech-O-Matic

WEDNESDAY, NOVEMBER 01, 2006 10:16 PM, PST

Parent’s Note:

So here is a quick summary of Keith’s clinical schedule – dry as it may be. For the past two days he has been receiving high dose G-CSF (neupogen) to boost his white blood cell production. We have been able to administer this at home with pre-filled syringes that we connect with special tubing to his Broviac. The syringe is placed into a special pump that slowly infuses the contents of the syringe over the course of about one hour. Pretty simple actually.

Also for the past few mornings we have been also taking blood samples (a bit more intense of a procedure) to Children’s Hospital lab to have them processed with the results then sent to Lucile Packard. A special test that measures CD34, an antigen that is expressed in progenitor cells, has also been performed to determine when Keith is ready to begin the collection cycle for his peripheral blood stem cells. Each time the test has been run so far he has not been at the necessary CD34 level, whatever that is. So we will not be going to Stanford in the morning as we had thought. We’ll just keep giving him his G-CSF and taking the lab samples in until we get the ok to head down for the collection cycle. It may be Friday, or it may be over the weekend, we’ll just go with the flow when Keith is ready.

For those of you that really want to dig into the science here’s a CD34 link. CD34

Keith is still feeling great with no negative side effects after transforming into a red ghoul and back.

THURSDAY, NOVEMBER 02, 2006 10:16 PM, PST

Parent’s Note:

Keith’s ANC and white blood cells are starting to spike upwards after being beaten down by the latest cycle of chemo. His current white blood cell count is 9.0 and is at the upper end of normal range, and his ANC is at 7,920 and is actually well above normal range. This progress parallels his recovery timing in all of his previous chemo cycles. So everything should be a go for the stem cell harvest at Stanford right?

Wrong.

Nope, he has to do better. The CD34 level that I mentioned in yesterday’s journal needs to be at or above 20 and he’s only at 3.4 now. So a call from the transplant coordinator at Lucile Packard indicated that they wanted things to go a little faster than they were going and we have been instructed to stop infusing the G-CSF intravenously through his Broviac (painless) and must now inject him with a syringe subcutaneously in his tummy (ouch!). We were dreading this possibility and hoping that the infusion pump method would get his counts up where they needed to be. But alas it’s not to be.

Josie and I received an impromptu lesson on how to give a ‘real’ shot from the nice folks at Children’s Oakland, you know the kind with a sharp, glistening metal needle – not those toy-like plastic needles like we have been using – the kind of needle that stirs up classic Freudian nightmarish fear and anxiety – both in the receiver (Keith) and the giver (parents). I was able to try my skills on ‘Chester’ the dummy torso that hangs around the clinic for just such occasions. I wouldn’t say I perfected the technique but I must have done ok by the nurse’s standards (at least I didn’t break the needle off) and was cleared to give Keith his next injection at home tomorrow. It is a hard enough to watch your child get a shot let alone have to give it to him.

Through all of this Keith was very brave again as usual, quietly watching as his hapless parents struggled with Chester while he absorbed the actual implications of daily needle pokes for a while. Thankfully the injection today turned out to be much less painful than Keith thought it would be and that should make it easier for him tomorrow.

And for me.......

FRIDAY, NOVEMBER 03, 2006 10:13 PM, CST

Dad: "So how was your day today?"

Keith: "I’d say it was probably an 8"

Dad: "Why was it an 8?"

Keith: "Because you gave me a shot."

Dad: "If I didn’t have to give you the shot, how would your day have been?"

Keith: "I would give it a 10."

Parent’s Note:

It seems that the 3 minutes it took to administer the injection shaved two whole points off Keith’s happiness scale – and I totally understand. Who in their right mind wants to get a shot? I’d have to say that I wasn’t looking forward to it either but it turned out fine in the end. Keith said it didn’t really hurt and I got the medicine into him. Mission accomplished. We’ll be repeating these subcutaneous injections for the next several days before apheresis begins at Stanford and we will continue until apheresis ends. So we’re looking at a week or so of daily shots.

For the rest of the day Keith plane-shifted between schoolwork, Kirby calling and World of Warcraft computer gaming (yes Michael, he’s back online now). He got his WOW character from level 17 to level 20. I have no idea what that really means, just thought I’d pass that along because Keith was pretty pleased with his accomplishment.

Meanwhile Josie scrambled to coordinate the logistics of getting the necessary Neupogen vials sent to us so that we would have enough for the next several days. It seems that Healthnet wants to mail order it from their Pennsylvania distribution center but that doesn’t get us the necessary dose for tomorrow morning. After quite a bit of phone time Josie was able to negotiate a deal to get a few doses from a local source, narrowly averting disaster.

Sorry to report Keith didn’t have a ‘10’ day, still given the circumstances an ‘8’ is a pretty good score in my book….

SATURDAY, NOVEMBER 04, 2006 10:21 PM, PST

Go Blue!

Yep, that's Mike Hart holding Keith's Banner. He had a so-so day today, rushing 154 yards on 25 carries.....

Parent’s Note:

We got the G-CSF shot out of the way early so Keith and the rest of us could enjoy the remainder of the day stress free. Because the Michigan game wasn’t televised today Keith grabbed his M cap and we headed out for a day at the Oakland Zoo with his friend Michael where he dutifully sent play calls between visits to the various animal habitats. According to Keith it was a toss up between the squirrel monkeys and the elephants for ‘most entertaining animals of the day’ honors (for very different reasons).

Back home for some computer game time and that pretty much sums up the day. A fun day by Keith’s reckoning.

It was decided that we don't need to submit the usual labs over the weekend, so we’ll find out where Keith’s CD34 count is on Monday and that will certainly set the course for the week ahead. I’d be surprised if he wasn’t ready to begin apheresis by Monday or Tuesday, but then again we’ve had lots of surprises in the past few of months.

SUNDAY, NOVEMBER 05, 2006 09:45 PM, PST

Parent’s Note:

Not much news to report so prepare to be bored. We’ve enjoyed a nice stretch where Keith has been feeling good. If another chemo cycle was next on the protocol schedule Keith would be starting it today or tomorrow. As it stands he gets a break of sorts as we wait for his CD34 level to reach the necessary level to start the peripheral blood stem cell collection. The lab draws on Monday will certainly result in communication with Lucile Packard Children’s Hospital and one of two scenarios will play out. He either will not be ready, in which case we continue to inject Neupogen and wait or he will be ready in which case and we head down to Stanford to begin the collection. Sounds pretty simple.

In other news, Scott did his good deed for the week playing his clarinet along with his music teacher at the local convalescent home here in Orinda. Josie said he sounded great and the audience was appreciative.

I realize I’ve been slacking in providing handouts for the Hem/Onc 101 course that Keith is teaching us all. The link to the chart below will give you a visual representation of his white blood cell count as it has endured four cycles of chemo to date.

The red dots represent lab results over time. The most recent lab indicated his WBC at 19.9 (x1000) on November 3rd. Anyone want to take a guess as to what it will be when his next lab results are back on Monday after having received two more injections of G-CSF?

Closest to the actual number (without going over…) wins a photo of Kirby signed by Keith. Good Luck.

Keith's White Blood Cell Chart

MONDAY, NOVEMBER 06, 2006 09:09 PM, PST

Parent’s Note:

The much anticipated labs came back and we now have a clear plan of action. We need to be at Lucile Packard Children’s Hospital at 8:15am tomorrow (Tuesday). Figuring an hour and forty five minutes to get the 55 miles from Orinda to Stanford in rush hour traffic and an hour to get ready and give Keith his Neupogen shot, we need to be up and running by 5:30. A tall task with our two kids.

Keith has an appointment with the apheresis machine with hopes of collecting a nice supply of stem cells that will be counted, evaluated and then stored in the deep-freezer (next to the breaded chicken cutlets) for a while until he needs them later for his replacement therapy.

We are told the on-line time with the machine to be in the range of 3 hours, so with the usual pre and post-treatment routines we will be at LPCH for most of the daylight hours. What happens on the following days depends on how tomorrow goes.

As for the answer to the WBC challenge from yesterday: Keith’s WBC count was 27.9. Amazingly, Linda Bemis predicted 28.2 which is within the allowed scientific margin of error – dead on I say. The coveted Kirby picture with Keith’s autograph is on the way to you!

Ok, because there were only two entries Annie gets one too…

Updated WBC Chart

TUESDAY, NOVEMBER 07, 2006 09:37 PM, CST

Parent’s Note:

Leech-O-Matic. That was the name boldly emblazoned on the machine that dominated the corner of the small room where we spent most of the day and to which Keith was about to get physically attached to for what would be almost 4 hours. So official looking this nameplate, it wasn’t immediately obvious that this was only a nickname. Apparently there are several other apheresis machines in the unit that have been bestowed similar titles such as “Bloodsucker” and “Dracula”. Later I learned that kids like Keith are called ‘Walkie Talkies” because, well, that’s what they can still do. It’s endearing to know that someone at Lucile Packard Children’s Hospital seems to have a sense of humor, warped though it may be.

Leech-O-Matic and others of its ilk are about the size of a small front loading washing machine, but it reminds me more of the old reel-to-reel tape decks I grew up with, except instead of audio tape it is fitted out with loops and coils of clear plastic tubing leading to and from spinning ‘reels’ and hanging bags of fluids. Of course one of these fluids is blood, and that is what was being pumped out of and back into Keith. The ‘reels’ somehow centrifuge the blood to separate out the stem cells and they are then collected in another hanging bag. Sounded like a washing machine numbingly stuck on the agitation cycle for 4 hours. At the end of the procedure Keith had produced a nice bag containing what we surmised are lots and lots of healthy stem cells.

The whole procedure was as advertised – painless and boring. About the only complaints Keith had were that he felt chills (cool blood returning) and he wasn’t able to log into his realm of World of Warcraft, where he had planned to game away the time. So he improvised and spent some time composing an email with this picture - I copied from this directly from his email:

/../\..\

/../..\..\

/../….\..\

/../……\..\

(O…O)

/…….\

/./\./\./\.\

/./.l.l.l.l.\.\

/./..l.l.l.l..\.\

/./...l.l.l.l...\.\

\/….\/..\/….\/

For those of you that need help, it is a representation of a particular type of cephalopod common in the world’s oceans but has a habit of being caught and served in restaurants under the pseudonym of ‘calamari’. I thought it was a very clever graphic.

Toward the end of the procedure Keith was paid a visit by Rita, the amazing trick-performing mutt. Keith watched as Rita’s human ran her through her repertoire of sits, stands and spins. The best trick was when Rita sat perfectly still as a large treat was placed on her nose. Perfectly still….. Perfectly still….. “OK” barks the human, and she snaps the treat after flipping it off her nose in mid-air. Keith got to run Rita through her paces a couple of times and really enjoyed her visit. Rita must have consumed about 20 treats in our room and had been doing the same routine for most of the other kids in the unit for a couple of hours before showing off her stuff to us. And she was still going strong…. I think Kirby has a little catching up to do in the trick department.

Hmmm…. maybe afterwards they hooked Rita up to a machine named “Up Chuck-O-Matic”…..

October 25th - 31st: 25 Nestle Crunch Bars and 3 Toothbrushes

WEDNESDAY, OCTOBER 25, 2006 10:36 PM, PDT

Dad: “So would it be ok if we came here for your bone marrow transplant?”

Keith: “Yea, I like it here. It’s warm”

Parent’s Note:

It may not be the best reason to select a bone marrow transplant center, but for Keith the visit to Stanford’s Lucile Packard Children’s Hospital seemed to be pleasant enough for him to feel comfortable with the idea of driving an hour plus each way….

Our consultation at LPCH went well. Keith met with the transplant physician for a few minutes and asked a couple of questions. The one I recall him asking was “So you’re just going to get my stem cells out this time, right?” The answer was ‘yes’ but the doctor, sensing Keith was sharper than your average bear, went on to describe the ‘collection’ process in greater detail. Keith seemed satisfied with the explanation and left the small conference room to join Uncle Jack in the waiting area to where he was looking forward to playing Age of Mythology on his laptop computer. Josie and I stayed on to discuss the finer details of the collection phase and also info on the transplant process.

We were relieved that we will be allowed to continue to infuse Keith’s G-CSF through his Broviac instead of through subcutaneous injections that Stanford prefers – unless his white blood cell recovery doesn’t bounce back as quickly as they would like. When his while blood cell count crosses above magic 1000 mark we will begin to administer higher doses to prompt more stem cell production. We are now on a daily home blood draw cycle to monitor his WBC counts until we’re told we can stop. The actual collection will involve 3 to 4 hour outpatient sessions for as many consecutive days (up to 5) as it takes to collect all of the stem cells that are required. These are then frozen in liquid nitrogen and stowed safely away until the transplant procedure occurs sometime later. The central line that Keith already has in place should be sufficient for the procedure and that is good news.

The doctor made Keith aware that the apheresis process can be, well, extremely boring so please make sure to bring plenty of entertainment. I could read on Keith’s face that this doctor was ok in `his book, basically saying bring your computer and video games and have at it.

The preliminary calendar provided to us indicates the stem cell collection would possibly start on November 1, allowing Keith to enjoy Halloween as a red ghoul the night before. Given the amount of G-CSF he will receive in the preceding days, his ANC level should be a gazillion or more, so even though he will be wearing a mask he won’t actually need one.

Personally, I think he should junk the red ghoul costume and just go as a humongous lymphocyte instead.

THURSDAY, OCTOBER 26, 2006 10:03 PM, PDT

Parent’s Note:

Keith felt pretty good and had a mostly uneventful day despite having an ANC of basically zero. The one exception occurred during the morning blood draw at home. Josie was unable to get the little lab vials to fill properly from his Broviac so she put in a call to the clinic to get on-the-fly instructions from the nurse on duty. It was a procedure that we had never practiced so Josie was a bit stressed but pulled it off just fine in the end. Somehow I always seem to miss the exciting stuff.

When the lab report came back later in the day it became apparent that Keith’s red blood cell count was low again so it was quickly arranged that he will report to Children’s Hospital Oakland day clinic in the morning for another blood transfusion. Thanks again to all who have given blood (or attempted), especially Uncle John.

After the whirlwind of the past week trying to sort out the transplant team and location, Josie and I are feeling more comfortable with the idea of having the procedure done at Lucile Packard despite all of the logistical dilemmas it places on us.

Besides, Keith is a smart kid and it will look good on his resume to have earned his way into Stanford at the ripe old age of ten………..

(wink…)

FRIDAY, OCTOBER 27, 2006 10:02 PM, PDT

Parent’s Note:

Keith is all juiced up again. Not only did he receive a bunch of red blood cells, he also received a new batch of platelets. This doesn’t mean he should go out and intentionally try to skin his elbows and knees to see if they scab over, but it is always handy to have a few platelets when something like a loose tooth pops out (which is about to happen).

Keith along with Josie and Jack all headed for the day clinic for a 9 am appointment. Keith was led to an isolation room because of his low ANC level and the nurse drew a blood sample for the lab. In addition to the platelets and red blood cells he received an injection of G-CSF and by mid-afternoon he was shown the door and everyone headed home again.

The results of the lab sample were sent to Lucile Packard as will the results of tomorrow’s home lab draw. They are monitoring him closely as we approach the collection date for his stem cells sometime early next week (probably).

Jack is heading back to Boston in the morning, so we will be on our own for a while. Sure was nice to have him around. Keith will certainly miss his uncle who was an ever-willing gaming partner during the past week. Scott’s attending a school dance tonight with all of his buddies and we can only assume he is having a good time. I suspect that we will get the usual one sentence synopsis of the event, a remarkable parallel to the way I evaded social conversation with my parents some 35 years ago…..

Next week promises to be intense so we’re saving up our energy. A relatively quiet weekend is on tap with tomorrow slated to be Get-Ready-for-Halloween-Before-It’s-Too-Late-Day, working on a few little art projects that Keith has expressed interest in over the last week or two. I seem to recall he wanted to make something unusual like an octopus ghost.

Very appropriate.

SATURDAY, OCTOBER 28, 2006 10:31 PM, PDT

Parent’s Note:

It might not have been a very impressive win, but Keith transmitted enough good plays to send Northwestern home with a loss and keep Michigan undefeated. He’s actually conserving his energy for the big Ohio State game – smart kid.

Keith’s cap is now 9 and 0 and safely stowed away in his medical cabinet next to the pre-filled saline syringes and G-CSF pump.

Oh, yeah, Healthnet has agreed to extend insurance coverage for his hat as well.............

SUNDAY, OCTOBER 29, 2006 10:08 PM, PST

Parent’s Note:

Keith had another good day. He was happy, expressive and seemingly pain-free, entertaining us all with his usual wit and charm throughout the day. Because his ANC is still hovering around zero, he and we hovered around the house all weekend, not venturing too far a field.

Unfortunately, the lab at Children’s Hospital called to tell us that the morning lab sample we dropped off earlier came back indicating that Keith needed yet another blood transfusion and more platelets. It was just this past Friday that he had his last transfusion of RBCs and platelets, so we’re a little surprised we are returning so soon to have it done again. So Monday morning bright and early we’ll show up again at the day clinic.

Keith is becoming such a regular customer I imagine he might just be able to walk in and say “Fill ‘er up. The usual.”

MONDAY, OCTOBER 30, 2006 10:19 PM, PST

Parent’s Note:

Keith got ‘juiced up’ today, receiving another transfusion of red blood cells and platelets. Most of the day was spent at the day hospital at Children’s, but Keith didn’t seem to mind too much. A laptop with a strategy game kept him very busy and entertained most of the time. His ANC is starting to bounce up and it looks like we will commence the daily high-dose infusion of G-CSF starting tomorrow morning. From what we have surmised from the transplant coordinator at Lucile Packard that would mean outpatient stem cell collection at Stanford beginning Wednesday or Thursday.

I have to say it’s amazing to me. Except for his thin and scraggly hair and a couple of tubes sticking out of his chest Keith seems like his regular ol’ self right now – happy and, well, a kid. Maybe it’s the transfusion, but he felt this way yesterday even before getting re-fueled. How he has been able to function at all, let alone approach normalcy is incredible to both of his parents and speaks not only to the resiliency of kids in general but to Keith’s inner strength and spirit.

There have been so many acts of kindness sent our way since this ordeal started 83 days ago and I’ve tried to share many of these instances with you through these journals. I thought I would mention one other. A couple of weeks ago Keith received a package in the mail containing a CD with a song written, performed and recorded especially for him. It was produced the Songs of Love foundation, a nonprofit organization that creates original personalized songs, free of charge, for children facing tough medical challenges. I have to admit it was an emotional moment listening to this song with Keith. He seemed at first a bit uncomfortable at the attention, but he smiled at the lyrics and in the end thought it was pretty cool. I wouldn’t expect to see it topping the pop charts any time soon, but I asked him if it would be all right to share it with his friends through this journal.

The link below should take you off-site and you will need some sort of player that can handle .mp3 files (windows media player or quick time should do the trick. It's 3.2 mb so be patient).

Keith's Song

If for some reason the link doesn’t work, maybe you can sweet talk Keith into humming it for you.

TUESDAY, OCTOBER 31, 2006 10:15 PM, PST

“I got 25 Nestle Crunch bars and 3 toothbrushes” Keith’s tally of his take for the night after trading with his friends

Parent’s Note:

Halloween Night and everything fell nicely into place: Keith’s blood counts were up and he felt great meaning he was cleared to head out into the moonlit darkness with his friends as a red ghoul. It was our treat to see him enjoying himself with his buddies and slogging up and down steep driveways with a heavy bag of goodies. He had been looking forward to this night for quite some time so we are glad that he wasn’t disappointed. We all knew that it might not happen if his recovery timing was off.

For those of you who were wondering exactly what a red ghoul looks like and for those of you who have been requesting updated photos, your requests have been answered – we aim to please around here.

Hope everyone had as enjoyable a Halloween as we did.

October 20th - 24th: "I Feel Good"... at Least for a While

FRIDAY, OCTOBER 20, 2006 10:24 PM, PDT

Parent’s Note:

Keith is home again. I could leave it at that and it would be a complete journal entry by my reckoning. But I’ll go on for a bit…

This might have been the ‘easiest’ of all of the cycles he has had so far. He has not felt sick so far (to the credit of the nursing staff) and we are keeping up his meds at home so it stays that way.

He’s of course happy to be home again and made the usual rounds to say hi to Kirby. He also brought home with him his killer gaming skills honed at the hospital and was looking wherever he could for someone he could victimize at Monopoly, GameCube or chicken-foot dominos.

We have filed an appeal with our insurer to have Keith’s bone marrow transplant at Children’s but as a backup, we have been also looking into having his transplant done at Lucile Packard Children’s Hospital at Stanford and have set up a consultation meeting on Wednesday of next week. If Keith is feeling up to it we would like to take him down to see the doctors and the facility.

We’re looking forward to a great weekend at home.

SATURDAY, OCTOBER 21, 2006 10:38 PM, PDT

Parent’s Note:

We pulled his cap out of the vault and plugged it in to his head once again. Sure ‘nuf he did his magic again and the #2 Wolverines are on track for the big showdown with the Buckeyes for bragging rights to the best team in college football. 8–0 and counting…

( If you are a Buckeye fan DO NOT click this link... )

Despite being exhausted by all of his efforts, he still was in the mood to seek out some Halloween décor and so we piled into the car and returned with two large pumpkins (one tall and skinny, the other wide and height challenged), an assortment of gourds and some Indian corn. He also had plans for several art craft projects that we just didn't have time for and will push off to tomorrow. You know, it’s just not too early to get into the holiday spirit when you moonlight as a red ghoul …

Keith demonstrated a surprisingly avid appetite today, starting with the standard morning fare of cereal but moving quickly along to an eclectic selection of homemade tacos (thanks Gabe!), a BLT – double bacon x 2, and salmon wrapped in prosciutto with a tomato / potato gallette and a bean medley (thanks Pam!). For an appetizer he had an infusion of G-CSF.

To continue his culinary extravaganza Keith is hoping to go to San Francisco’s Chinatown to have lunch at his favorite ‘floatie boatie’ sushi restaurant (I know, seems like the wrong neighborhood for a sushi restaurant). Both Keith and Scott love to go to there whenever we drag them into the City. Don has been working hard for the last several days in the garden outside our kitchen window and it really shows: where once dirt and a retaining wall were the focus now a great cascading rock garden takes the stage: it looks amazing. I like to think of it as a healing garden, offering great comfort to all of us. Rumor has it that the deer think it is pretty special too…

Keith has been feeling great all day long. We are so relieved that he has had a relatively comfortable week given what he has just been through. He really deserved a break like this one and we are all happy for him.

SUNDAY, OCTOBER 22, 2006 11:59 PM, PDT

Parent’s Note:

Just when we thought we were in the clear from the residual effects of chemo, we had a day like today. Keith woke up feeling fine, but soon afterward started to feel queasy and he became sick to his stomach. Unfortunately we were just not able to ever get ahead of the nausea and for the rest of the day he was sick, sick, sick. By the evening he was so exhausted we realized that there was no way we were going to beat this on our own and we could see Keith was becoming ever weaker and severely dehydrated. We made the call and soon afterwards were in the car heading for the ER at Children’s.

There was initially some hope that we would get some fluids in him and return home later in the evening, but the physicians felt the best option was to keep Keith overnight. He was moved upstairs to the 5th floor and is now comfortably resting and looking a whole lot better than he did earlier in the evening.

So that is where he is for now and he should be able to return home in the morning sometime. Seems like every day is an adventure.

MONDAY, OCTOBER 23, 2006 10:27 PM, PDT

Keith has just one thing to say.........

TUESDAY, OCTOBER 24, 2006 10:32 PM, PDT

Parent’s Note:

Because last night’s journal was a bit brief, I’ll try to catch everyone up on the highlights of the last two days. Keith’s grandparents Annie and Don are safely back in Michigan after spending almost two weeks with us. Sad to see them leave, but we already have travel reservations for them to return in December. Ah, but we have a new houseguest this week: Keith’s uncle Jack arrived on Sunday from North Andover and has been doing a great job of helping with anything that needs help while keeping lots of smiles on Keith’s face.

Scott has been going through his own little ordeal – with his orthodontist. He had upper braces placed a week ago and it took several days before he could really eat anything solid. Much to his dismay, however, a band slipped out of place and he went in again today to have it fixed. They must have tightened the wire pretty well this time and now his teeth are aching again. I don’t think he thinks it’s a whole lotta’ fun.

Keith returned from his little hospital stay Monday afternoon and looked and felt much better after spending Sunday night plugged in, getting re-hydrated and gaining the upper hand on his difficult nausea episode. Today the pink bucket only had to make an appearance one time.

We are scheduled for a consultation with the bone marrow transplant team at Lucile Packard Children’s Hospital (Stanford) Wednesday afternoon. Our expedited appeal to stay at Children’s Oakland was flatly denied by our insurance company. So in preparation for the hand-off, Keith needed to make another rendezvous to the day hospital at Children’s Oakland earlier today to have a battery of blood samples drawn so the folks at Stanford can accurately assess his condition. We have mixed feelings about splitting our care between two institutions but we’re open to giving it a try as long as everybody talks to each other. Keith will come with us to Stanford to meet the doctors and to see for himself the facilities.

Excellent news came back from the detailed assessment of the bone marrow samples taken a little over a week ago. Apparently the test can identify one cancer cell in a million and there was no detectable cancer in either of the two samples. While it doesn’t mean that his cancer is gone, it does mean his bone marrow appears ‘free’ of cancer and so it’s time to collect his peripheral blood stem cells as the next step in his protocol. This will happen before his next scheduled chemotherapy course and could happen as soon as the end of the month or sometime in early November depending on his recovery from the last chemo cycle.

Should be an eventful period coming up.

BTW, looks like over 15,000 visits to Keith's page. Thanks for checking in!