Tuesday, March 13, 2007

March 13th - 18th: Ode to an IV Pole

TUESDAY, MARCH 13, 2007 10:03 PM, PDT

Parent’s Note: Day +6

Ode to an IV pole……..

Well, not really an ode, more of a musing I suppose. It’s interesting how Keith’s IV pole has evolved in the two plus weeks he has been captive here. Starting out, it held the usual bag or two of hydration fluids – one modest pump did the trick. Then came the chemotherapy – a lot more bags and medications and another pump. Then came the transplant – time for another pump to control pain meds (he can choose to boost his pain medication with the press of a button on the end of a cord). Now we’re up to 4 pumps and 12 assorted medications and fluids, each with its own array of tubing and fittings all tangling their way down the pole, like the tentacles of a robotic jellyfish, eventually ending up in - you guessed it - Keith.

This IV pole has transformed itself from a non-descript piece of utilitarian medical equipment in the corner of the room into a magnificent centerpiece – a visual feast of blinking lights with an assortment of clanking, buzzing and beeping sounds reminiscent of an Oliver Messiaen composition that really rounds out the surreal effect very nicely. Like a Christmas tree, you just can’t help noticing it when you walk into the room.

It also makes a nice place to hang a stethoscope, a blood pressure cuff and a strand of courage beads.

As impressive a sight as it is, it is even more dominating in the bathroom, which is where is where it needs to go when Keith needs to go. Trying to roll this monster around reminds me of one of those silly strong-man competition events, where the he-man has to urge a stationary tractor trailer into motion. Similarly, this IV pole has substantial mass and ergo substantial inertia. Wrestling this into the bathroom without rolling over tubing, cords or Keith's bare feet is truly a sight to behold. I half expect a referee to blow his whistle when we complete the task.

I think I’ve beaten this topic into the ground sufficiently….. -_-


Keith had a few more ups than downs today. This persistent fever is still his bugaboo, and when it recedes Keith feels good enough to sit up in bed. For a while he even played a board game with his favorite child life specialist. It was very good to see that.

WEDNESDAY, MARCH 14, 2007 10:10 PM, PDT

Parent’s Note: Day +7

It’s a week post transplant and things are about the same in room 2341 as they have been for the past couple of days. Keith seems to be hovering just above his nadir but still can’t shake this troublesome fever despite the multiple antibiotics he is receiving. We don’t get the sense that anyone is too worried about this right now and hopefully in a few days his own body will be able to pitch in and help. Day +10 is when many of the BMT kids here start to feel better, followed shortly thereafter by a measurable response in their white blood cell counts. We and especially Keith are hoping he follows this pattern as well – he’s sick and tired of being sick and tired.

One of the highlights of the day included selecting a special bead for his BMT procedure to add to his courage bead strand. This was the first day since transplant that he felt up to it and he chose a large marble-sized glass one with lots of colors and little glass bumps on it – it reminds me of the skeleton of a sea urchin that sometimes washes up on the beach. LPCH isn’t currently involved with the Beads of Courage program but are interested in beginning it. In the interim, we felt it would be important for Keith to continue what was started at Children’s and so we are helping them help continue his bead collection (Ann and Don actually purchased the beads). Darci, Keith’s social worker seemed very taken by the process of presenting Keith his ‘earned’ procedure beads as well as helping Keith pick out his special bead. She said that it required her to review his charts and she was amazed at all he has been through to this point. I think somehow it made her feel more connected to Keith as well as the plight of all of the kids here.

Another highlight is that Keith really wants to taste food again even though his mouth is too sore to actually eat it. I am guessing that he hasn’t had anything that you or I would consider food for over a week now. The chemo and subsequent sores seemed to have altered his perception of taste and several things he tried he couldn’t taste at all. So he requested a lemon Popsicle. Now this he could taste, but unfortunately citrus and open mouth sores just don’t match up well so we put it aside and he fell asleep in frustration. Still, I see this as a good sign that he is heading in the right direction on the mending road.

Scott has been doing well the past week according to reports from Annie and Don, who are graciously holding down the fort in Orinda for us. Scott, along with everyone else in his class are currently selecting their course choices for next fall’s freshman year of high school and so we have a counselor meeting set up on Friday to talk about his choices and how they hopefully match up with his goals. Wow….high school……..

THURSDAY, MARCH 15, 2007 11:24 PM, PDT

Parent’s Note: Day +8

I have two old phrases to offer that have some relevance to the events of the day: 'Beware the Ides of March' and 'Multum in Parvo'. I’ll get to the Ides reference later, so let’s first tackle the second reference. “Zero Point Two”. “0.2” “Two tenths”. While this number sounds trivial it actually is an incredibly significant number. If you recall my little ANC 101 lesson and quiz from a long while back you may remember that white blood cell counts are a key component of one’s ANC (Absolute Neutrophil Count) which in turn is a measurement of one’s immune system function. You simply can’t have an ANC above zero without white blood cells. And for the past week Keith has essentially had zero white blood cells. So here’s what is so significant about such a seemingly insignificant numeric decimal: Keith’s white blood cell count registered “Zero Point Two” today!

In other words Keith’s lab results assayed two white blood cells per microliter of blood. So bear with me as I do the math….If a child of Keith’s size has somewhere in the neighborhood of 2.2 liters of blood volume, that translates into 4.4 million white blood cells. Even if I’m off by a million or so, that’s a few million more than he’s had for a long time and as far as I’m concerned that’s enough for a heck of a WBC reunion party.

Obviously we’re excited by this small but huge milestone and while Keith is a long, long way from the 4,500 to 10,000 WBC/mcl that is considered normal, and his counts will likely zero out several times before they can eventually mount a sustained recovery, it indicates the nascent beginnings of an immune system beginning to brew inside Keith’s sore and tired body.

Speaking of Keith’s sore and tired body, that is exactly what it was again today. Maybe a slight overall lowering of his fever, but the raw sores in his mouth and GI track were really difficult for him to deal and the basal rate of his pain medication was boosted again. He also developed a series of annoying nosebleeds so he was rewarded with another platelets infusion. So while it sounds miserable (and it is), Keith is holding on to the hope that come day +10 he will start to feel better. The quiet rumblings from his white blood cells bode well for his wish to come true.

As for the Ides of March, on this 2,051st anniversary of Julius Ceasar’s demise, the only assassination plots of interest to me are those targeting any rogue cancer cells.

The Latin phrase 'Multum in Parvo' acknowledges Keith’s great achievement of reaching “Zero Point Two”.

Translation: Much in Little

FRIDAY, MARCH 16, 2007 07:50 PM, PDT

Parent’s Note: Day +9

Keith may have finally turned the corner on the worst effects of his BMT procedure although the doctors are wisely holding off on making any official pronouncements just yet. Not held to such professional standards I can be more opinionated and from what I have observed there are several developments that seem to suggest he’s heading in the right direction. His fever finally subsided and his temperature has been below 100 for nearly the entire day. Also his white blood count remained steady at yesterday’s level and the doctors, peering into his mouth with a flashlight, could see evidence of healing beginning with the assumption that similar healing is going on everywhere else along his GI track.

It’s still really hard for Keith to talk let alone smile because of how raw and inflamed his mouth and throat still is, but I couldn’t help but sense that this news buoyed his spirits despite still feeling awful. The thought that he could start feeling better instead of worse from here on is pretty powerful medicine indeed.

I continue to be amazed at how he has been able to cope through all of this unpleasantness, composed and rarely complaining. Since he certainly didn't inherit this trait from my genetic makeup he must have inherited it from his mother or taken the advice from a guestbook entry a while back to ‘Cowboy Up’. I suspect any cowboy worth his chaps would welcome Keith into their brotherhood for the grit and determination he’s shown.

Keith deserves a gentle breeze at his back for a change and I can't help but sense a shift in the wind.

SATURDAY, MARCH 17, 2007 09:03 PM, PDT

Parent’s Note: Day +10

This was the day we anticipated Keith would begin to feel better, but it seems we’ll have to put off the celebration for another day. The doctors’ hesitation yesterday in pronouncing Keith out of the woods so-to-speak turned out to be well founded. On the positive side of current developments, his fever seems to be under control for the time being and his WBC is up again, now registering 0.3. But there is a rising concern about some blood chemistry issues and the beginnings of some issues involving his renal function (Hematuria) and liver function (Veno-Occlusive Disease) that can occur in a small percentage of BMT patients. Because this can become quite a serious issue Keith has been receiving quite a bit more attention from the medical staff than we are used to seeing on a weekend day. The sooner his own body can begin to fight the good fight itself the better, so we are hoping his counts will rise quickly and soon.

So it looks like we still have a pretty strong headwind to get through before the wind shifts to our favor – although I’m hoping I’m as wrong about this prediction as I was of last night’s prediction.

SUNDAY, MARCH 18, 2007 09:50 PM, PDT

Parent’s Note: Day +11

Keith has been having a lot of vivid dreams over the past few days and we suspect his narcotic pain medication may have something to do with his fitful sleep patterns and frequent vocalizations. A couple of days ago Keith woke and explained this dream vignette to Josie. It went something like this: “I had a dream and in it everyone was able to drink except me.' He went on to explain 'When I get better, I want to have a party at our house and invite all of our friends over. Everyone has to bring a drink and we can mix them all together into one big drink and then we can all try it.” Seems to me like a great idea – maybe a kids version and an adult version… Obviously, Keith is longing to enjoy the pleasure of eating and even drinking again, as he has not been able to do either for eleven days now.

The issue the doctors are most concerned about now seems to be how much damage his liver has sustained from the chemotherapy. Unfortunately there is not much that can be done medically to treat it and so we are a bit anxious about what the next few days will reveal. He has been receiving lots of platelets in an effort to stop the bleeding in a couple of areas unrelated to his liver. Still, Keith seemed to be a bit more responsive today than yesterday and many of his vital signs are pointing in the right direction. His WBC is now up to 0.5 and his phosphorus and sodium levels have improved from yesterday so we’ll take that good news forward with the hope that tomorrow is a better day still.

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