Tuesday, November 14, 2006

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.


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.


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.


“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.


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.


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.


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.


“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.


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.


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.


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.

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