Friday, February 9, 2007

February 9th - 15th: Still More Tests

FRIDAY, FEBRUARY 09, 2007 11:18 PM, PST

Parent’s Note:

Since I didn’t attend today’s little breathe-in at CHO today, I must rely on sketchy information provided by those who did - namely Josie and the subject of all this attention - Keith. Apparently the Pulmonary Function Test turned out to be a series of 3 or 4 different tests. Keith had to hold his breath for as long as he could for one, others required specific breathing patterns, and one involved inhaling a small amount of carbon monoxide to see what happens. It took a couple of hours to get through the whole thing and Keith came home exhausted (and a bit winded as well).

The respiratory therapist who administered the exam seemed to be happy with Keith’s results and as a bonus we found out that Keith does not have asthma. So one more test completed and one more box checked off in preparation for the main event – the transplant at Stanford later this month.

And we’ll all breathe better when we get through that….


“Sure. I really like lobsters.”


“Wait – not to eat!!!”

A funny moment as Keith responded to a misinterpreted dinnertime question. He’s a friend to all crustaceans after all.

Parent’s Note:

Ann and Don arrived today from Grand Rapids without any significant travel glitches – pretty good given the rainy weather in the Bay Area. They are planning be with us for a month or so to help us cope with the logistics of living a Palo Alto / Orinda co-existence once Keith is admitted for the transplant.

Rain all day long kept us mostly indoors except for a run to Walnut Creek at the request of Keith to satisfy a soft pretzel craving. He was particularly happy with his choice of a jalapeno pepper pretzel. The remainder of his day was spent at the keyboard of his laptop. Looks like more wet weather ahead for tomorrow, so we may need to scrap the rock scramble on Mount Diablo and seek out an indoor venue instead.

“Just make sure his Broviac is well secured” Keith’s oncologist offered when we mentioned this planned activity. Point well taken – I suppose we don’t need yet another reason to visit the clinic.

SUNDAY, FEBRUARY 11, 2007 09:52 PM, PST

Parent’s Note:

We took advantage of the breaks in the clouds to stretch Keith’s legs a bit. Back to the UC Botanical Gardens in Berkeley that has become one of Keith’s all time favorite places, mostly because of the newt filled Japanese pool in the Asian garden area. If it weren’t for the chill in the air, Keith would have been happy watching all of the newts (Taricha torosa) scurrying about just below the surface for hours. Alas, we all soon were drawn to the sunnier paths ahead and left the newts to embrace their newtiness unfettered by humans ogling into their watery habitat.

UC Botanical Gardens (map)

California Newts

MONDAY, FEBRUARY 12, 2007 09:55 PM, PST

Parent’s Note:

Tomorrow marks the first of several trips to Stanford scheduled for this week. Keith will make a brief appearance to receive an injection prior to Wednesday’s MIBG scan. Should be more time in the car than in the clinic.

Keith continues to feel well and we are doing everything we can think of to keep it that way during ‘flu’ season. Lots of washing of hands in our abode. That and ice cream. Keith is about enjoy an big sundae replete with hot fudge sauce he acquired on his recent visit to the Scharffen Berger factory. Nothing wrong with his taste buds. Mmmmmm.

TUESDAY, FEBRUARY 13, 2007 09:52 PM, PST

Parent’s Note:

Josie, Keith and Ann completed the long trip to Stanford and back according to plan - all 591,360 feet to be precise, not including the distance from the car to Clinic E and back.

Keith is slightly radioactive right now, having received a radioisotope injection (iodine-131-Meta-IodoBenzylGuanidine) earlier this afternoon in preparation for tomorrow’s MIBG scan at Stanford. Of course before that he had to swallow an iodine solution to protect his thyroid, and swallowing medicine of any kind is always the hardest part for him.

This is the second time this scan has been performed on him, the first at UCSF back in September. The scan is designed to identify any areas where neuroblastoma cells may still linger. It is a very sensitive method of detecting the spread of cancer in bone and soft tissues and this scan will be the last of the staging diagnostics that will be performed prior to his admission for the Bone Marrow Transplant. He’ll need to lay motionless for about a half an hour, but he’s become pretty accustom to this sort of thing by now so it shouldn’t be a big deal at all. On Friday Josie and I will meet with the doctors at Packard for a pre-admission consultation and at that time all of the test results should be in hand and assessed by all of the various specialists.

The results from last week’s bone marrow aspiration at Children’s showed no neuroblastoma – an expected result, but still very good news.

No neuroblastoma. I like the sound of that.


Parent’s Note:

We were on the road by 6:15 am this morning heading down to Stanford. Keith grumbled with outrage at the lack of light in the sky but he was quick to resume his slumber in the back seat of the car; a mobile bedroom of sorts. We did have a few minutes to grab a bite at the Stanford cafeteria before showing up at the nuclear medicine department. Keith was crumbling with hunger by then and dove into a large maple doughnut with such élan that it vanished before I had taken the first sip of my coffee.

The nice part about being the first appointment of the day is that there is seldom a long delay in the waiting area. Keith was soon led into the scanner room and selected a video from one of the two large cardboard boxes beneath the rolling TV / VCR combo. The series of scheduled scans consisted of four separate 10 to 24 minute passes, so having something to occupy his mind while the rest of his body needed to remain motionless was important.

Keith looked through the offerings and there was the usual Barney, Little Mermaid and Thomas the Tank Engine titles. He finally chose one of those funny animal videos. The technician got Keith situated on the scanner bed, plugged in the VCR and soon began the first scan.

The room itself was about 18’x18’, sparsely adorned with a few chairs, a counter and a couple of monitors around the perimeter. Dominating the center of the room was the impressive Phillips scanner that was ‘parked’ quietly to one side but came to life like one of those automobile assembly robots in slo-mo when the technician pressed a few buttons on his remote. As the two large imaging plates swung into place and passed over and around Keith’s motionless body, grainy images could be seen generating on the monitors in the corner – first his head, then his chest, and finally his legs.

The room lights were dimmed to a fine dining light level and I was taken by the surreal experience as the whirring sounds and precise motions of the scanner combined with the “Blue Danube Waltz” soundtrack of the funny animals video segment. It was “2001 a Space Odyssey” all over again – very Kubrickian.

Nonetheless, Keith performed his ‘dead possum’ routine flawlessly, not twitching a bit during the entire procedure, and he received praise from the tech for the very nice, clear pictures he was able to collect thanks to Keith’s help.

Soon we were back in the car and headed to Orinda again. It turns out Keith will need to return once again on Thursday to repeat the long 24 minute 3D scan at the doctor’s request. A bit tedious but manageable in the big picture of things….

Happy Valentine’s Day to all.


Parent’s Note:

Josie and Ann delivered Keith to the Stanford nuclear medicine department again today. Keith was scheduled for what we thought was a repeat of the same 20 minute torso scan he had the day before. As it turned out he received two scans instead, the first a simple 10 minute scan – no problem. But no one was prepared for the second one. It turned out to be a long, continuous 40 minute scan and by the end of it Keith was about ready to scream he was so exhausted – certainly mentally and probably physically as well, having to lay so still for so long. It was very hard for him, as it would be for anyone, but he did manage to get through it without wiggling. I’m sure the last thing he wanted was to have the technician repeat the whole thing again if he were to have given in and twitched during the 39th minute.

For about ten minutes during the scan Josie and Ann were asked to step behind a glass partition for their protection. Alas, poor Keith wasn’t the beneficiary of such protection. So it wasn’t the quickie in and out scan that anyone (in our house at least) had envisioned. Josie had a post-scan plan that centered on enjoying lunch at one of the outdoor cafés in the nearby shopping center. It was to be a reward for Keith having to put up with the procedure and a reward to Josie for the stress of such a long drive. But after what he had just gone through Keith just didn’t have the interest or energy, so back to the car for the return trip home it was.

By the time I returned home from work later in the evening, Keith was back to his usual happy self again, a testament to his mental fortitude and amazing resilience. Friday is the big meeting with the BMT doctors to lay out the plan for the months ahead.

No comments: