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....


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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


“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.

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