MONDAY, SEPTEMBER 11, 2006 10:20 PM, PDT
We made it to the clinic at Children's Hospital without incident. Keith had all of the customary vitals taken and had his blood labs drawn. He weighed in at 25.6kg which is .3kg less than when he was discharged last week, but Josie recalled that the staff at the hospital forewarned us that the outpatient scale registered .3kg less than the hospital scale, meaning Keith had actually retained his weight despite losing his feeding tube. Phew, we didn’t want to see that tube stuck back in again… and we’ve really been enjoying seeing his smiling face again unobstructed with tape and tubes.
Stacy, the outpatient center nurse who met with us today turns out to be the same nurse who Josie finally connected with a few days back when Keith had his little feeding tube incident. She congratulated Josie and Keith for a job well done. She shook her head and confided that those weighted NJ tubes are really hard to get out which I interpreted to mean “I can’t believe you actually did it!”
Later in the morning we received Keith’s lab results. His counts are as follows:
Hemoglobin: 8.5 - a bit low, but ok
Platelets: 182,000 – normal range
WBC: 0.1 – oops, normal is 5,000 to 10,000
ANC: I’ll tell you more about his ANC in a bit.
Maybe if you are like me you might have Googled a few of the medical terms that have been thrown around in these journal entries, but for those of you who haven’t, here’s your chance for a little course in oncology blood chemistry. And just because I like the term so much, let’s call it
Neuts + Bands 101
(Neuts + Bands)(WBC x 10) = ANC (please be careful not to confuse Neuts + Bands with the
Newts Band rock group from
ANC = Absolute Nutrophil Count – really an overall measure of how well your body is capable to ward off disease.
WBC = white blood count.
Neuts = the short name for neutrophils which are a specific classification of white cells having special inclusion of granules, which puts them in the group of granulocytes (cells with grains).
Bands = immature neutrophils.
A normal range of ANC for a healthy person is somewhere between 1500 and 8000 cells per cubic millimeter with anything above 1000 providing a good ability to fight infection.
I’m sure no one has ever used this analogy before … Imagine the ANC levels in a chemotherapy patient like someone bungee jumping from the Millau Viaduct (here’s a link to Sir
Norman Foster’s great bridge design in southern
Let’s begin with a patient who hasn’t started chemo yet or has just recovered from a previous round of chemo and his (or her) ANC level is more-or-less in the normal ANC range – say 8,000. This corresponds with our bungee jumper being strapped in, standing on the edge of the bridge – ready or not - at the apogee of his imminent transit. Now let’s imagine the patient has endured an initial round (or subsequent round) of chemo. This would correspond to our jumper having just leapt (or more likely having been pushed) from the edge of the bridge and is in a state of free-fall; screaming downward. Likewise, the patient’s ANC is heading south as well, at some point crossing the magic ANC 1000 marker where one is considered immunologically compromised or even below ANC 500 where it is very difficult to fight off infection. For the next comparison, assuming our jumper hasn’t had cardiac arrest (although I suppose this doesn’t really matter…), the elastic bands tighten and our jumper snaps to a stop a few feet from the bottom of the gorge. This would correspond to our patient’s ANC reaching its nadir, ie: ZERO. Ok, so this is where Keith is today. He has absolutely no white blood cells and no immune system to speak of meaning no ability to ward off infection.
So we have an action plan. Australian rules football, kick boxing, X-games type skateboarding tricks, traveling on overcrowded MUNI busses and being sloppy about washing your hands are no longer on Keith’s do list for the time being.
The good news is that the daily infusions of G-CSF are designed to force Keith’s own body to produce new, healthy white blood cells and neutrophils. As with his first course of chemo his ANC should rebound within a few days to a week. Then he gets to climb back up to the top of the Millau Viaduct and do it all over again! You’ve got to be a kind of daredevil to fully experience cancer or bungee jumping. I admire the courage of both.
That’s it for class although there might be a pop quiz tomorrow.
And just to make sure that you read all of the journal entry I’ve saved this for last. Keith actually felt really good again today.
Remarkable despite striking out in the white blood cell test.
TUESDAY, SEPTEMBER 12, 2006 09:25 PM, PDT
“It was not at all exciting. Because what we had to do was we went there and it took an hour just to get there. Then we sat in the waiting room for half an hour. And then we waited for them to give me some dumb drops. I had to wear my mask the whole time and it was hard to breathe. And then after the drops we finally got the injection and then we could leave. So it took another hour to get back. The best part was the Subway sandwich place on the way back to the car – I had a meatball sub.” Keith’s account of his visit to UCSF today
All-in-all another feel-good day for Keith despite the less than enthusiastic recall of his trip to UCSF. He's been flirting with a slightly elevated temperature but nothing that would qualify as a true fever yet – fingers still crossed on that one.
Keith’s scheduled visit to UCSF was to have the isotope injection for the MIBG scan that will be performed when he returns again on Wednesday. Josie and Jennifer intrepidly navigated the
Because the isotope is slightly radioactive we’re really looking forward to turning the lights off to see if he glows in the dark….
Gel-cap update: We’ve at least temporarily solved the dilemma of filling gel-caps for Keith. For all of you who jumped to our rescue and provided us with funnels (thanks Kris), Slurpee spoons (thanks Liz) and advice we are grateful. Sorry, but the best solution came from the Keith’s doctors when they decided he no longer needed to be on his oral meds (at least for now…). I have a feeling all of this paraphernalia will still come in handy in the future.
Finally a message from the interim IT manager of this website: Keith loved the video of the scuba diving cat sent by Randi several days ago. And he really enjoys pictures of fat cats – thanks Jill for sharing you picture of Talulah. He asked me to put the word out that if any of you have a great picture of a fat cat or bizarre animal to share with him he would really love it. If you like you can email to him at the address on his “My Story” page or to me at
WEDNESDAY, SEPTEMBER 13, 2006 10:18 PM, PDT
“The scan wasn’t too bad. I had to lie still for an hour but I got to watch a movie. We stopped by the Subway shop again and I had a spicy Italian sub after we were done with the scan” Keith
Parent’s Note: Keith did great a great job. He is an amazingly patient patient. I figured he would wiggle or sneeze or do something that would require the scan to be redone, but no, he was solid as a rock even though he was grimacing toward the end when his backside became numb. This time I drove Keith and his mom to UCSF. I was looking forward to navigating the dreaded parking garage only to be directed away by the parking police as there was not a spot to be had inside the zillion space structure. I wound up parking near Kezar Stadium several blocks away and a hundred feet lower in elevation than the hospital lobby. This trip really requires two parents (adults). We really appreciated how much more convenient and child-friendly Children’s Hospital Oakland is after the experience of the last two days.
On the way back toward the
Tomorrow (Thursday) we draw blood labs at home and should know what Keith’s ANC is by mid-afternoon. He told us he felt better today than yesterday so we are assuming that his white blood count is climbing up nicely thanks to the G-CSF injections.
No big tests or procedures scheduled for the rest of the week, so if Keith continues to feel good we will begin to catch him up on some of the schoolwork he has missed. He also commented that he was a bit put out that his drum set had been relegated to the garage. Josie and I looked at each other and agreed that if he wanted to jam away on the drums again we would be happy to put them wherever he wants them. The sacrifices we make as parents…
Oh, he didn’t glow in the dark last night…
THURSDAY, SEPTEMBER 14, 2006 10:59 PM, PDT
“School started today for me - sort of… Mrs. Morris came to our house and helped me with math and reading today. Also I just want to say thanks for sending all of the fat cat pictures.” Keith
Keith kindly produced several more vials for the lab today that we drew around 8am. He has become so accustom to people poking and prodding that he rarely complains – just pulls up his shirt and produces the little white tubes dangling from his chest. The idea was to get the samples to the lab early in the day in hopes of getting the results later in the afternoon. As it turns out the lab sends the samples to a processing center in
Keith enjoyed meeting with Jill Morris for the first day of home tutoring and we are so happy and fortunate she offered to do this for Keith. A bit of a refresher in multiplication and division are on our to-do list after his ‘extended’ summer vacation. For some reason Keith’s hair has stopped falling out, and while it is very thin he still is hanging on to a few ragged locks. Even better, his eyelashes and eyebrows seem to be pretty much intact now (…hey Trevor, Keith might have more hair than you now – so sorry!….)
Lastly, there are some great ‘fat cat’ and fun animal pictures and links coming in from all of you which always produce a smile from Keith, so thanks for continuing to cheer him up. After looking at some of them in amazement, it seems Kirby has a whole lot of munching to do to be in the same league with some of your ‘fat cats’..…
FRIDAY, SEPTEMBER 15, 2006 09:33 PM, PDT
We are starting to realize just how unpredictable our days are now. We had expected the lab results to indicate that Keith would have bounced back to healthy blood count levels by now but cancer doesn’t seem to play by the rules. In fact his results were still very low in several areas triggering a call from the oncology clinic requesting Keith to kindly rearrange his busy schedule and make an appearance at Children’s Hospital for a blood transfusion pronto.
It seems his hemoglobin had fallen below the magic number of 7 where transfusion is usually performed. This might partially explain why Keith seemed to have a bit less energy the last couple of days. The lab report also indicated his platelet count was low and he was still severely neutropenic http://en.wikipedia.org/wiki/Neutropenia . His Absolute Neutrophil Count (ANC) was about 1,450 units short of a passing grade. Remember that pop quiz I threatened a while back? Sharpen your pencils…there’s a quiz at the bottom of this entry.
Keith drew up his courage once again and we piled into the car. At the outpatient center Keith was shown to an isolation room. Another blood draw was taken to verify the previous lab results. The results were quickly confirmed so word went out for some nice grade-A hemoglobin in a bag. He received the transfusion, was given more G-CSF and just before leaving had another lab draw to determine his phosphate levels. He was comfortable during all of this, the staff was kind and friendly as usual and yes he could watch the Food Network to while away the time. All-said it was about a six-hour unplanned errand door-to-door. And yep, he’s earned another bead or two to add to his growing string of Courage Beads.
Actually we are relieved that this situation was taken care of today so that Keith can continue to recover his energy level, eat lots and put on some weight, and just enjoy a regular weekend with Kirby… plus he looks all nice and rosy again to boot. His next lab draw isn’t until Monday so it will be Tuesday before we know whether Keith’s blood counts have bungeed to the point where he can jump on that crowded BART train without a mask.
Poor Scott has been fighting a mild cold for most of the week and despite not feeling all that great he has been very conscientious of Keith’s needs. He even volunteered to give up his bed in the room he shares with Keith and sleep on the floor in another room so that Keith wouldn’t catch anything from him. Maybe as some sort of cosmic reward, Scott’s ‘Egg Launch’ experiment, where he had to design a container to protect a raw egg launched from a catapult, flying 40-60 yards onto hard blacktop was a success on the first attempt. No yolking…. if only NASA could boast such a record.
And now to separate the wannabe medical students from the rest of us here's the promised QUIZ:
What was Keith’s ANC today if his white blood count was 0.2 and his neuts + bands were 25? The first 100 correct answers will be entered into a drawing for a mint-in-bag orange ‘neuroblastoma’ jelly bracelet (fine print: answers must be neatly typed on an IBM Selectric typewriter and placed in relatively clean mayonnaise jar on our front porch no later than the Autumnal Equinox).
(Spoiler 1: review the formula from the 9/11 journal entry. Spoiler 2: a passing ANC grade is 1500. Spoiler 3: the number is the same as the answer to the following question: On what yard line is the center of the large block M at mid-field in
SATURDAY, SEPTEMBER 16, 2006 11:59 PM, PDT
“I had something I really wanted to say, but I forgot what it was…” Keith
The transfusion really worked wonders and today Keith popped out of bed cheerful and ready to take on the day. His appetite was back on track and he really seemed to be more like his usual old self again. Amazing what having enough red blood cells can do for one’s outlook not to mention one’s complexion.
It was a great day for
Keith’s Grandpa Jim & Helene drove all the way down from
We also picked up Judy, Keith’s aunt from
I’m sure there is something else I really want to say, but for the life of me I forget what it is…