Tuesday, November 28, 2006

November 28th - December 4th: The Tumor Board

TUESDAY, NOVEMBER 28, 2006 09:53 PM, CST

Parent’s Note:

Keith and Josie arrived at Children’s for an 8:30 am appointment for packed red blood cells and platelets but after drawing labs it was decided only to give him platelets. His HBC had climbed a bit from yesterday so there is a slight possibility that he can get by without a red blood cell transfusion. More likely is that he will be back later in the week for the 'juice'. Josie’s sister, Christine, arrived today from Virginia joining Josie and Keith in the day hospital and will spend the rest of the week with us helping in any way she can. Many thanks to the Rohrer family for letting her come out and to Karen for delivering Christine from the airport.

Later Josie and I met with Dr. Feusner, Keith’s primary oncologist, to review his current status. This was a meeting we were both dreading and looking forward to. We were about to find how well Keith had responded to treatment over the last couple of months. Keith’s latest CT imaging from yesterday was reviewed by a group of specialists including Keith’s radiologist, surgeon and Dr. Feusner. The meeting occurred earlier today in a rather bluntly named gathering called the “tumor board”. As we searched for a room to sit down and talk, I had this awful flashback from early August as Josie and I were led to an empty office in the ER along with several physicians and a social worker to hear words you never, ever want to hear about your child; “cancer”, “it is very serious”, “it has spread”, “it’s going to be a long haul”, “your lives will change”. The words we were about to hear from Dr. Feusner would be either good news, or not; Keith would either be responding to treatment or he wouldn’t. In a way his life and ours seemed to dangle in uncomfortable silence as we walked down the hallway and situated ourselves in an exam room.

Why isn’t he saying anything?

The news turned out to be good. Better than good. Poker face. His tumor had reduced in size 90% from the time of diagnosis. From 1,000cc’s to 100. The doctor told us “To be honest with you, I was not especially looking forward to seeing the results. I was surprised at how the tumor has responded. It is very good indeed.” The surgeon also feels confident that the tumor can now be removed.

A big relief. A few more tests needed for this week including another CT scan of his head and a bone scan using radio isotopes to get the whole picture. And while we still have a long road ahead we have put some distance between where we began and where we need to get.

A recent guestbook entry asked whether Keith was still earning Courage Beads. The answer is yes. Here is his current tally as of a week ago:

2 Bone Marrow Aspirate/Biopsy = Beige
17 Course of Chemotherapy = White
2 Central Line/Port/PICC Line Inserstion & Removal = Orange
11 Clinic Visit = Blue
2 Emergency/Ambulance/Unusual Occurence = Magenta
1 Hair Loss/Thinning = Brown
1 Isolation/Fever/Neutropenia = Lime
2 Morphine/Dopamine/PCA Infusions = Purple
16 Pokes(IV Starts, Blood Draws, IM injections, Port Access) = Silver/Black
38 Tests/Scans(EEG, ECG, ECHO, MRI, CT, Bone Scan, Gallium..) = Light Green
25 Transfusions = Red
7 Tube Insertions(Catheter, Chest, NG, Foley) = Aqua
10 Sleep over at Hospital/Patient Admission = Yellow
1 Stem Cell Harvest/Dialysis/TPN = Dark Green
3 Surgery = Silver
1 Transfer to the PICU = Square Heart
7 Special Accomplishments and Recognition = Special Selection

146 Beads (and counting)


Parent’s Note:

Sorry, no news of any merit tonight.

Keith felt good today even though his hemoglobin is low. We have stopped the overnight fluid IV and discontinued all of the antiemetics so he’s basically running under his own power again and the pink bucket can now be stowed. However, because he is neutropenic with his ANC hovering around zero, he spent the day at home and laid pretty low. Thursday should be a repeat of today’s (in)activities while Friday’s menu will feature a full day of tests with some RBC’s on the side.


Parent’s Note:

As advertised, today was a quiet day at home for Keith – comfortable and happy. It would have been just another day except the lab results indicated that his hemoglobin and platelets were severely low (confirming his somewhat ghostly complexion). So a couple of phone calls later and the day hospital at Children’s was put on notice to be waiting for him bright and early tomorrow (Friday) to receive two units of packed red blood cells and more platelets. It seems the chemo has a residual effect and the daily G-CSF / neupogen hasn’t yet turned it around.

We are relieved that we are able to stay home tonight. There was some discussion of admitting Keith right away to get transfused, but since he claims he is feeling fine we were spared the inpatient admission.

Once Keith finishes being transfused sometime before noon his day at the hospital is not over. He will head to radiology for two more tests – a bone scan which requires a radio-isotope injection and a CT scan of his head. On top of it all he is severely neutropenic now, so he will need to wear a mask when he is not in an isolation room.

So a long and not a particularly fun day in store for Keith tomorrow, yet he seems to take it all in stride.

Well, there is the dog-faced puffer to look forward to.

FRIDAY, DECEMBER 01, 2006 10:18 PM, PST

Parent’s Note:

Keith toughed it out and made it through a long day of pokes, prods, IV drips, long scans and tests interspersed with lots of waiting (aka: boredom) in between. He did pay a visit to his new friend the dog-faced puffer in one of the waiting rooms but in general not a particularly fun day. On the other hand what had to get done got done and by late afternoon he was back home where he hit the sofa exhausted and slept until dinner.

Now at 10 pm with his new batch of red blood cells and platelets he is awake and recharged, ready to play WOW through the wee hours (if he could have his way).

Everything should be in place for him to have a good weekend with no scheduled medical events, and maybe he can even begin to pull his ANC out of the cellar so that next week he can romp with his friends again.


Parent’s Note:

Good days don’t necessarily require sensational news or big victories. Sometimes good days are quietly absent of any of that and this was one of those simple days.

So in keeping with the simple day, I offer a simple journal entry. Keith feels good and is back to his humorous, witty self again. What more could we ask for....?

SUNDAY, DECEMBER 03, 2006 10:48 PM, PST

Parent’s Note:

Pretty much a ditto of yesterday as far as Keith was concerned – it was a very slothful weekend by most accounts. Keith is feeling good and eating well to boot. I should say that we did in fact manage to pry him off his computer long enough for a quick trip to the local nursery were we picked out a Christmas tree. It will be delivered sometime in the next couple of weeks after we know more about Keith’s treatment schedule.

While we were there, Keith homed in on their cactus collection and picked out a few eclectic ones to add to the potted cactus garden at home. A couple of them were quite ‘Seussian’ in appearance.

We’ve had several family visitors lately. Keith’s aunt Christine is heading back to Virginia as I write this after almost a week with us and his uncles John and Chris were here recently as well. Great to see all of them and their help was much appreciated.

This Tuesday we will meet with Keith’s surgeon to discuss the upcoming procedure to remove his remaining abdominal tumor. It’s not clear when the surgery will be but it will most likely occur sometime within the next ten days, possibly even later this week, meaning that Keith should be out of the hospital and back home in time to enjoy Christmas.

Keith and Scott have put in their collective request. No little white lights on the tree this year. No, they want colored lights. Big ones.

MONDAY, DECEMBER 04, 2006 11:42 PM, PST

Parent’s Note:

I was only able to spend a few minutes with Keith today, so I can’t give you a blow-by-blow of his day. My first encounter was when I had to wake him up early in the morning before leaving for work to draw his lab samples. My second and final encounter was as he and Josie were heading off to Children’s Hospital for an unplanned overnight stay at around 5:30.

It seems that once again his hemoglobin and platelet counts are very low and he is in need of yet another transfusion of both. It’s too bad we couldn’t have found out earlier in the day so that we could handle this on an outpatient basis, but what can you do….

So other than this inconvenient little sleep over Keith presumably had another good day and felt ok despite ‘running on empty’.

20,000 visits and counting….. Thanks to everyone for checking in and keeping up with Keith’s progress.

Tuesday, November 21, 2006

November 21st - 27th: "I ...Want ...an ...Egg"

TUESDAY, NOVEMBER 21, 2006 11:04 PM, PST

“I’m happy to be home but I really don’t feel so good.” Keith

Parent’s Note:

It’s late so very briefly:

  • Keith is home again and happy about it – no major incidents.
  • He’s not feeling so good but hanging in there. Pink bucket is nearby but so far unused.
  • Keith’s happy to see Kirby. Kirby’s happy to see Keith
  • Meds schedule calls for a midnight and 6am wake up – if we can just stay on schedule the pink bucket stays clean.
  • Home nurse stopped by to show us how to set up the IV fluid pump. It comes with a backpack so if he wants to…say… go to the mall he can. 100ml/hr over 12 hours overnight. Planning for at least 2 maybe 3 wake-ups to visit to the bathroom.
  • We’ll keep up the meds and fluids for several days. Our plan is to keep Keith comfortable and avoid another trip to the clinic for hydration.
  • G-CSF starts up again tomorrow as his ANC is heading south.
  • Food network Thanksgiving programming running incessantly in background – already watched Rachel Ray’s 1 hour Thanksgiving dinner show 3 times.
  • Keith actually ate a baked potato – hunger is a good sign.
  • Scott helped Keith get through the morning at the hospital – thanks Scott.
  • Keith held himself together pretty well today considering – thanks Keith
  • We’re so proud of you both.


5:00 AM

Pre-dawn muttering from Keith in a slow deliberate voice: “I …Want… An… Egg…”

Parent’s Note:

His pronouncement reminds me of a weird scene in Men in Black where the ‘Bug’, after climbing out of the smoldering impact crater left by his space ship, slips into the unfortunate farmer’s skin and pounds on the nearby farmhouse door demanding “Sugar, I… Want… Sugar...”

He never asks for eggs. OK, well, there was one other time and interestingly that occasion was also just after arriving home from a chemo cycle a while back. Unfortunately, before we could actually prepare the requested ‘egg’ he puked so I don’t thing he actually partook of said ovum.

Anyway, this time he got his egg and fortunately for us we didn’t have to get skinned in the process. Hardboiled….with ketchup…and Tabasco….and it stayed down. Yum. Go figure… Josie thinks it might have something to do with the Decadron he is receiving; it's a steroid hormone that reputedly causes an increased appetite. Interestingly he also has cravings for baked potatoes and has been devouring them as fast as Josie can bake ‘em.

Hmmmm….. could this be the key to getting Scott to warm up to a green vegetable or two?

The bottom line is that Keith has managed to keep his head above water all day, cooperating when he needs to take his medicine – all 16 +/- pills, IV drip and a G-CSF infusion. I’m now a firm believer in the old axiom “An egg a day keeps the ol’ barf bucket away….”

* * * * *

Despite what has been a very tough time for us as a family, we are thankful for so many things. Given it is the eve of our favorite holiday what better time to express thanks to all who have helped us get through the hard days. To all who have touched us with acts of kindness, humor, care, concern, nourishment, support, community and guidance, whether through these pages or in other ways, small or large, we are humbled and most thankful. Someday we hope to repay the kindness.

The Kelley family wishes each of you a peaceful and happy Thanksgiving. Be thankful. Enjoy family. Savor life.


And have an egg...


Parent’s Note:

As hoped this was a food centric day for us all but especially for Keith, the eating machine.

The morning started out similarly to yesterday with Keith requesting buttered toast (3 slices) with ketchup (talked him out of that), followed by a hardboiled egg (ketchup, Tabasco & mustard), followed by a waffle with syrup, Chex Mix, a baked potato with bacon, sour cream and green onions (all before noon), followed by a couple of buttered biscuits* and then Thanksgiving dinner: turkey & mashed potatoes* with stuffing*, gravy, root vegetable gratin, cranberry rosemary jelly*, cranberry chutney*, spiced pears*, green beans*, more biscuits* followed by a nap and an IV infusion. He finished off the day with cherry pie and ice cream.

A pretty good turn around from a couple of days ago I’d say.

* Thanks Pam!

FRIDAY, NOVEMBER 24, 2006 10:54 PM, PST

Parent’s Journal

Keith has been getting 12 hour overnight hydration with an IV line and a pump that we hook up before he climbs into bed and it seems to have been doing the trick for the past three days in keeping the nausea at bay. Today was a quiet but good day on the whole. Keith spent most of it lying on the sofa with his laptop nearby and he felt fine until just a few minutes ago. Hopefully it turns out to be a singular incident.

The pink bucket is out again and I’m on duty tonight.


Parent’s Note:

Last night’s entry ended with a somewhat ominous note but fortunately the remainder of the night was incident free as was today. So chalk up another good day for Keith and a thumbs up for the overnight fluid IV – we think it’s made a big difference in helping Keith get through these tough days following chemo.

The lab samples we took to Children’s yesterday came back pretty good. His platelets and hemoglobin are low but ok and interestingly his white blood cell count and ANC are both much higher than we would expect 5 days out from chemo. The oncology clinic’s suspicion was that the G-CSF might have started too soon so we were told to skip today’s infusion and we will see where he is again on Monday when we draw labs again.

Also on Monday Keith is scheduled for another CT scan, his fourth so far. The results will be available for review when the oncology / surgery / radiology team meet on Tuesday. We should be apprised of how Keith has been responding to treatment and what the recommended next steps are when we meet with Keith’s lead oncologist later in the afternoon. Rounding out the clinical activities of the upcoming week: on Friday Keith will have another bone scan performed.

A while back Keith declared Saturdays to be “Kirby Appreciation Day” in our house. So I asked Keith as he was getting ready for bed what he had done to show his appreciation (since he spent most of the day behind a computer). A momentary wisp of guilt crossed his face and he was quickly off to find Kirby and vocalize his appreciation of him. Kirby was equally quick to put aside the unintended oversight (heck, he was sleeping most of the day anyway) and the two were best buds again before you could say ‘pudgy cat’.

SUNDAY, NOVEMBER 26, 2006 10:34 PM, PST

Parent’s Note:

Keith must have been dreaming about food last night because this morning he awoke with a whole shopping list in his head. His requests were duly recorded and before 8:30am he and Josie were off to Safeway to acquire the food of Keith’s craving. Judging by the contents of the grocery bags when they returned the bakery section was quite popular and it’s safe to say Keith enjoyed this outing quite a bit. Cinnamon rolls, chocolate covered doughnuts, Challah bread to name a few of the goodies. Keith was appalled that I opted out of a doughnut and had a bowl of cereal instead.

Keith and Scott both had friends over and it was good to be reminded of what a house with lots of boys in it sounds like, even if it meant that Kirby had to recede with trepidation into a dark corner for a while.

We brought out a couple of large boxes of ‘cool parts’ collected from years of disassembling outmoded tape decks and other electronics. Between the odd assortment of fans, motors, speakers, lights and wires along with some 9-volt batteries the boys produced some interesting things that whirred and spinned and they seemed to have a good time doing it. A nice break from computer gaming and validation that saving this junk for all these years was worth it.

After dinner Keith was looking for a book to read and picked up one of Josie’s knitting books lying on the coffee table. Keith was at first alarmed and then curious at the coded text:

………..5-st cross: SI 4 sts to cn and hold to back of work, k1, sl 3 sts back to LH needle and place rem st on cn to front of work, k3 from LH needle, k1 from cn…………..

Keith said “You know, I think if they actually spelled out the words they could charge about $2 more for the book and people would still buy it.”

Now, not one to let an opportunity such as this pass, a chance to convert yet another to the indescribable wonders of knitting, Josie was quick to offer her services and some hands on training. Sure enough, it looks like Kirby might just the lucky recipient of a swamp green scarf knitted by Keith. At least the first row is done....

Now is that cat appreciation or what?

MONDAY, NOVEMBER 27, 2006 09:58 PM, PST

Parent’s Note:

Keith woke up in pain complaining that his back hurt. He’s become pretty tolerant of pain but this clearly was outside his comfort zone and he was pretty miserable. We quickly got a dose of Tylenol into him and placed a heating pad under him and within 15 minutes he was comfortable again.

“How do you feel?”


“Did the heating pad help?”


Later after he got up I realized that the heating pad wasn’t actually turned on. The Tylenol must have done the trick because the heating pad was at best only a placebo effect. Of course we were relieved he recovered so quickly – presumably only a muscle pull or the like.

Mondays are lab days, so I drew Keith’s samples and dropped them off at Quest Diagnostics where there is a standing stat order. The results were faxed back 3 hours later and his counts were way down in all the key categories. White blood count low, hemoglobin low, platelets low, ANC essentially zip. The surprise isn’t so much that they were low (it seems to be the normal pattern following chemo) the surprise was how quickly it happened. Just three days ago his ANC was almost 11,000.

The low counts also mean that tomorrow (Tuesday) Keith will be expected to show up for another visit to the day hospital at Children’s to get blood and platelet transfusions.

Monday afternoon’s CT scan went pretty much as planned. Keith consumed as much of the contrast fluid as he could (which is to say not much) but what was to be a 3:00 scan turned into a 4:30 scan.


So please pardon me for this semi-cynical observation…. it seems that as a medical patient the assumption is your time just isn’t valuable and it is somehow ‘ok’ to be late for an appointment by an hour and a half. Still we keep showing up time after time. I know if I made my clients cool their heels in our office waiting room for an hour and a half they would be clients no more.

The silver lining, if there was one, was the aquarium in the corner of the waiting room. When Keith realized that there was no outlet to plug his laptop into he was forced to look for an alternate form of entertainment. Upon closer inspection the aquarium was home to a puffer fish! And not just any old puffer fish. This was a dogfaced puffer (arothron nigropunctatus) and it held Keith’s rapt attention for the duration of his extended visit. It must have made quite an impression because it was the subject of much conversation when he got back home. I'd like to believe that this puffer took something positive away from this exchange as well and may now have a new and much improved outlook on those strange humans on the other side of the glass. Keith has this almost Doolittlian gift when it comes to animals.

For all who haven’t seen a dogfaced puffer (including me) here is your chance to put to use some otherwise unused gray matter… Dogfaced Puffer

If nothing else, we try to keep these narratives educational….

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.

Wednesday, November 8, 2006

November 8th - 13th: Stem Cell Collection


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.


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....


xxxxxxxxx// \ \

x/\/\xxx..xx/ /

( o o )_____/ /



l l l\/\/\/\/\l ll


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


“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.

Wednesday, November 1, 2006

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


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.


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?


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….


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:












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”…..