Monday, March 26, 2007

March 26th - 31st: The Slingshot

MONDAY, MARCH 26, 2007 10:41 PM, PDT

Parent’s Note: Day +19

Keith’s uncle, Jack Ferres, flew out from Boston yesterday and is staying with us for the next week or so. The boys always look forward to seeing him and today Jack and Scott drove down from Orinda after school let out to pay a visit to Keith. From what I heard Keith had a great time and was even coaxed out of his room for the first time in three weeks.

Let me elaborate on this.

The doctors couldn’t be happier with Keith’s recovery so far. What is of most interest to them now is getting him ready for discharge. It could take a couple more weeks but to that end, Keith needs to eat solid foods and drink on his own (hasn’t done that yet), take oral meds (hasn’t done that yet), have a stable ANC (working on that) and be physically able to move about on his own.

It was this latter topic that Keith decided he would tackle today. At first he didn’t want to do it, but after some negotiating he agreed that he would leave the room under his own power only if he could bring his ‘nerf’ slingshot with him. We’ve learned that compromise is useful in situations like this and Josie agreed to the deal. So with slingshot in hand, IV pole at the side and ‘light red’ facemask clamped to his head he left his HEPA filtered sanctuary and began to slowly circle the hallways around the nurses station. The slingshot soon came to action with Scott feeding Keith the soft, round ammo balls. Uncle Jack was the target and the more Jack was hit the faster he tried to escape being pummeled. Not to miss out on this fun, Keith raced to keep up the attacks. In the end Keith made a double loop around the unit, foam balls were flying everywhere and the nurses were cheering him on.

It was a good day. Fortunately LPCH’s accreditation assessment team wasn’t anywhere to be seen…..

TUESDAY, MARCH 27, 2007 11:03 PM, PDT

Parent’s Note: Day +20

Steady progress and happy doctors. The theme of the physician’s morning visit was to encourage Keith to work on swallowing, starting with small sips, working up to being able to take oral medication along with food & drink. The sooner he can do these things, the sooner the IV pole can be returned to the medical supply closet, allowing Keith to be shown the door to the outside world.

Keith’s mouth is feeling a lot better and even though his stomach is still twitchy these activities should be something he can work on over the next several days. He now knows that he can begin to take control of his life again and now has the incentive and motivation to shorten his stay.

WEDNESDAY, MARCH 28, 2007 09:16 PM, PDT

Parent’s Note:
Day +21

Continued progress today. Medically Keith is doing great – no issues with his counts or blood chemistry, he has lost the puffiness in his face, his liver seems to have returned to normal size and the doctors are still very happy with his solid rebound. Weaning Keith from the IV pole is the main priority now. Some things are slowly being discontinued, like his pain meds and others are being reduced, like his nutrition which will continue as nightly IV infusions after we are discharged. Still others will need to be continued in some other form, like oral medications that he is currently receiving via IV.

Josie and I received a primer course in how to administer his TPN, a custom made soup of proteins, carbohydrates, vitamins & amino acids. This along with another solution of lipids will need to be given to him by us nightly for quite some time after discharge. There are many steps to the process and a lot of plumbing involved but we’ll figure it out.

The oral medications shouldn’t be a big issue in the long term, but it presents Keith with his biggest current challenge. He still hasn’t started eating or drinking yet and he is quite apprehensive about swallowing the pills that are sitting in front of him right now. I’ll let you know if our attempt is successful or not in tomorrow’s entry. There are rumors flying about that Keith could be discharged as early as the middle of next week if he continues on this track and he is able to swallow his pills and eat.

Finally, the humorous picture is from a greeting card Keith received today that made us all laugh. I suppose Keith might begin feeling like the unfortunate cat as he itches for an escape from Room 2341.

THURSDAY, MARCH 29, 2007 09:52 PM, PDT

Parent’s Note: Day +22

Success! The pill was swallowed. Make that the pills.

Keith did a great job controlling his anxiety and made a huge step forward toward losing the IV pole. Keith had another good day and is still tracking the way the doctors expected, if not better. Since he has been off GCSF for quite a while his ANC has dropped as his own body takes up the responsibility of producing a new immune system. He is currently just below 500 but the sense is that he may be at his nadir and his counts should rise on their own soon. The hope is to avoid having to re-introduce GCSF again as it signals the body to produce only white blood cells at the expense of many other types of blood cells that are necessary for a functioning immune system.

Projecting forward to the date when Keith is finally discharged from the inpatient setting – possibly next week some time – we will unfortunately not be able to return to Orinda. The protocol for his BMT procedure requires that he remain within 15 minutes of Stanford (no bridges) so that in the event of a post-discharge complication he has quick access to medical support. So we have decided to relocate Keith to into a special room at the Ronald McDonald House a short distance from Lucile Packard. From what we have been able to discern the Ronald McDonald House seems quite attractive and the room that Keith would be assigned is one of six in a special immunocompromised wing fitted out with special air filtration and separated from the general rooms. House rules state that only one parent may spend the night with Keith and so we will continue a similar pattern to the one we have adopted for the past month or so with Josie and me rotating nights with Keith.

We are told that for quite some time after transplant, BMT patients are at increased risk for infection from the usual pathogens – viruses, bacteria & molds. So this seems like the sensible approach. The stay should last for about one month during which time Keith will frequent the clinic at LPCH for lab samples, check-ups and radiation treatment. The radiation plan is not yet clear and additional scans will be done to establish one in the next week or two. Radiation is standard for the protocol that Keith is following but will be targeted to a only few selected sites, and probably including the site of his originating solid tumor.

The pink mask and slingshot made an appearance again today and it seems to have almost become a highlight for the staff. Some have even made appointments with Keith to try their own hand at the slingshot in his room. The clock on the wall seems to be a favorite target. We seem to be really hard on clocks…..

FRIDAY, MARCH 30, 2007 10:58 PM, PDT

Parent’s Note: Day +23

Keith’s ANC slipped a bit further below 500 today so he did receive a dose of GCSF just to give his system a little boost. No big deal - it’s pretty normal for this to happen we’re told.

For entertainment and distraction, Keith has been enjoying a game called ‘Blokus’, a strategy game where each player begins with an identical number of irregularly shaped pieces. The object is to place as many of your pieces on the playing grid while blocking your opponent from doing the same. I’ve played at least 5 games with Keith and have gone winless so far. Josie has fared no better. Uncle Jack is the only challenger that has won a game (he won one, lost two) and I’m guessing that was probably because Keith was just trying to be nice to his uncle. No such leniency with his parents though. Keith has always been pretty good at math and my sense is he's as sharp as ever in that category.

The big news today is that Keith was unplugged from his IV pole for 3 hours during the afternoon – meaning no pain meds – and he was fine. He took the opportunity of this brief period of freedom to get out of his room and harass the nurses with his slingshot. Apparently legend of the slingshot has spread – and now even the lead physicians all want a crack at trying to hit the clock on the wall in his room.

What have we started here?

SATURDAY, MARCH 31, 2007 09:52 PM, PDT

Parent’s Note: Day +24

Keith’s day didn’t start out on a very positive note. He seemed tired, withdrawn and wasn’t interested in activities of any kind except watching TV. He complained that his stomach felt weird and sure enough we had several run-ins with the pink emesis basin before he started pulling out of it and feeling better toward mid-day. He made a strong recovery in the early afternoon, which was coincidently the time that Scott and Uncle Jack arrived. Keith was really looking forward to their visit today and with a dose of Zofran he was able to muster up enough energy to put on a good show for them and enjoy their visit. The first thing he wanted to do was to ‘battle’ Scott in a game of Blokus. Yep, he won. A bit later on he was disconnected from his IV pole, similar to yesterday, and we took advantage of the great weather to get out of the room and head up to the roof garden where Keith could walk around outside his room unfettered by his facemask. He looped around the full circuit, blowing some bubbles and watching them float off into the distance. It was good to see him make such a dramatic rebound after feeling crummy in the morning.

Medical update: The single GCSF infusion he received yesterday had a profound effect, boosting his ANC from a lowly 340 to over 5000. Amazing. He was also discontinued from his continuous pain relief. He seems to have no pain issues at the moment – it is the nausea that we need to overcome. Until we can figure this out he will continue refuse food and fluids. Obviously, he needs to be able to eat and drink before we will get the nod from the doctors to leave the confines of the hospital for good.

Around mid-afternoon, a building maintenance person stopped by the room and posted letter sized note above every plumbing fixture in the room. It said “Do not turn on water or flush toilets between 11pm and 5am. Workers will be connecting new drain lines in the construction area (below)”.

A hospital patient room without water? This should make for an interesting night…..

Monday, March 19, 2007

March 19th - 25th: The Stay-Puft Marshmallow Man

MONDAY, MARCH 19, 2007 09:04 PM, PDT

Parent’s Note: Day +12

We’re a bit less anxious today than we were over the weekend and Keith is now showing signs of improvement in his blood counts and overall chemistry. Even the bleeding has stopped thanks to the double doses of platelets he has been receiving. The big news is he had a measurable Absolute Neutrophil Count (492) for the first time since transplant, meaning that he not only has some of those handy white blood cells but a bunch of happy neutrophils as well. That’s certainly cause for celebration, but it is no time to quit - he needs to keep his cellular manufacturing plant working overtime. He’s still a long way from feeling good the way you or I would define ‘good’ but in time he will get there and that’s the goal.

Sorry for not posting any new photos in a while but Keith just hasn’t been that photogenic lately, nor understandably interested in posing for any pictures. One of the effects of all the fluids he has been receiving is that it has made him puff up like the super-sized Stay-Puft Marshmallow Man. Once he down-sizes again and his agent gives me the nod I’ll post one.

TUESDAY, MARCH 20, 2007 09:51 PM, PDT

Parent’s Note: Day +13

It wasn’t big and it only lasted a few seconds, but Keith smiled today. This would be the first time in almost two weeks. On paper you could see he was improving - all of his numbers are now heading in the same positive direction. But it was this small, almost indiscernible turning of the lips that made me feel that Keith is going to get through this incredible tough procedure just fine.

His ANC is now at 792 and climbing, no fever, no bleeding etc. etc. Hurting still, but on the mend.

So what topic could have possibly made Keith break out of his smile coma?

The thought of a 23 pound cat. That’s what.

WEDNESDAY, MARCH 21, 2007 09:26 PM, PDT

Parent’s Note: Day +14

Keith asked “Who is going to stay with me tonight?”
I replied, “I am. Is that ok?”
Keith shook his head in the negative.
Feeling a little hurt I asked, “Why is that?”
Keith said, “I might barf tonight. I don’t think dads should have to deal with that.”

How thoughtful. I guess he doesn’t remember how many times (dozens) I’ve run for the bucket over the past couple of weeks. So we talked a little more and I explained that I didn’t mind rolling up my sleeves and getting a little dirty if that’s what it took. With that, he agreed it would be ok for me to stay and for Josie to get some well-deserved rest at the cottage.

“I need a buddy.” Keith said after Josie left, motioning to the chair next to his bed. And that’s where the two of us have been hanging out for the past several of hours, watching game shows, cartoons and penning this journal entry. Food Network seems to be off his TV favorites list for now. In fact, food in general is off his favorites list right now – he’s still receiving IV nutrition only. His mouth is still quite sore and his stomach is a bit twitchy.

Still, Keith is feeling much better again today. His ANC nearly doubled to 1,630 and soon we should be able to settle his tummy. He did some bedside exercises and even managed to take a shower to round out the day’s physical activities – not bad for someone who’s been flat on his back for a while now. For his shower, the nurses had a clever, hi-tech solution for keeping his central line dry where it enters his chest: Press ‘n Seal food wrap. After his shower we peeled off the wrap as though he was some sort of frozen dinner entrée. “Hmmm. I smell good.” he said after climbing back into bed. It seems that the stereotypical dismissal of male sensitivity to aromas just doesn’t apply in Keith’s case. He has an uber nose and his uber senses are slowly returning to their former uber glory….

as is the man himself.

FRIDAY, MARCH 23, 2007 11:06 PM, PDT

Parent’s Note: Day +16

No huge news today, just gradual improvements from the previous day. Keith spent most of the day awake and alert - a big change from days past where sleep dominated his schedule. His most recent ANC count taken nearly a day ago (Thursday at midnight) registered 2,640, a solid number to be sure. If he stays above 2,000 for his next lab, which we expect he will, the daily infusions of GCSF that he has been receiving since transplant to boost his white blood cell count will be discontinued. Apparently he must have met some sort of threshold (x number of days with an ANC above y) because his bedside table is now graced with a mask that he can put on if he wants to explore the wild frontiers of the nursing station outside his room.

Now, he has worn masks before when he has been neutropenic in the past: you know, the innocuous pastel-colored paper types that surgeons usually wear. The mask that he gets to wear from now on is a little different – it’s a 3M model 6291/07002 P100 Particulate Respirator. This lovely device has a plastic face-piece designed to fully cover his nose and mouth and has symmetrical cylindrical HEPA filters protruding from the left and right cheek areas. It’s not quite as bad as the cold war gas masks of lore but I’m pretty sure you won’t be seeing any of these being modeled on the runways of Paris this upcoming fashion season. Oh, except the filters are hot pink – I guess that could be considered a fashion statement of sorts.

Here’s the fine print from the accompanying manual: “Use for solids such as those from processing minerals, coal, iron ore, cotton, flour, and certain other substances. Liquid or oil based particles from sprays that do not emit vapors. Metal fumes produced from welding, brazing, cutting and other operations involving heating of metals. Radioactive particulate materials such as uranium and plutonium. Asbestos.”

I see no mention of just breathing hospital air but I guess that goes implied since it seems to be suitable for breathing the air at Chernobyl reactor 4.

His stomach continues to be twitchy and the doctors are suggesting that it could be another week or so before he starts to feel some relief there. Still, we’re thrilled that he is continuing to get better every day, and a twitchy stomach and a clunky facemask is a small inconvenience in the big picture of things - although I think we need to work on the filter color.

I’m having trouble envisioning the Keithanator wearing pink.

THURSDAY, MARCH 22, 2007 09:40 PM, PDT

Parent’s Note: Day +15

I’m just realizing now how little sleep I got last night because of all of the beeping IV pumps alarming every hour or so. So forgive me if my fingers are a little heavy right now. Sleep…… would………… feel…………………………. so……………………………… good……………………………… right………………………………………………………………………… now…………………………………………………………………………………….

Sorry about that...... It was a long night, but not because Keith wasn’t feeling well. I’ve noticed that some nurses are better than others at attending the pumps before they scream out for attention. We both were dragging a bit in the morning until the doctors came into the room on their rounds with big smiles. Keith’s ANC is now 2300 and all his other labs look great as well so everyone was in a jolly mood for a change.

Keith stayed awake for the remainder of the morning and Annie and Don drove down from Orinda to take advantage of the moment and spend some time with Keith and Josie. Sadly they need to return to Michigan on Saturday. Keith fell asleep soon after they left and has been sleeping ever since – probably trying to catch up on the sleep we didn’t really get much of last night.

SATURDAY, MARCH 24, 2007 07:09 PM, PDT

Parent’s Note: Day +17

Another day on the upswing here in room 2341. Scott, Annie & Don arrived mid morning and Keith lit up for the first time since the transplant – smiling and displaying the unique mannerisms that make Keith well, so Keithlike. Even the controllers for the GameCube came out after a long hibernation and the two boys played Kirby’s Air Ride for a while. It was a real treat to see and a great way to send off Annie & Don after living with us through the darker days over the past month.

Keith is not quite ready to eat or drink yet, but maybe we will reach that milestone in a few days. As expected his GCSF was stopped today because his ANC has been solid for the past three days. The continuous pain meds are still running, but the dosage is being reduced gradually so hopefully he’ll have a ‘soft landing’ and experience few withdrawal symptoms after being on narcotics for so long.

Keith rubbed his head several times today and said he could feel his hair coming back. Sure enough, there’s some fuzz pushing its way out of his nice round head. I realize his hair takes very much after Keith himself - they're both very determined to succeed.

SUNDAY, MARCH 25, 2007 11:09 PM, PDT

Parent’s Note: Day +18

When Keith is feeling good he can be very animated, particularly with his facial expressions – eyebrow lifts, Garfield-like stares and rolling eyes
Ө Ө, and yes of course his unique mouth contortions. By these measures Keith indeed had a very good day. He even spent some time on the window seat next to Scott and later did target practice in the room using one of those soft sponge-ball type slingshots. We had a couple of good laughs as he nailed one of his stuffies in the ol’ cottontail from across the room a couple of times and once nearly shot the ball into one of the plastic urinals on the end of his bed. We considered this an entertaining example of physical therapy, even though you won’t find any diagrams of this particular exercise in the paper handouts from the hospital.

About the only visible thing holding Keith back is his continued struggle to keep his stomach calm. Unfortunately there were several episodes today when the emesis basin made an unwanted appearance.

Otherwise a good weekend heading toward what should be an even better week ahead.

PS: Sorry about the Jayhawks – Keith fell asleep before the game started….

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.

Wednesday, March 7, 2007

March 7th - 12th: Day +0: The Transplant

WEDNESDAY, MARCH 07, 2007 09:45 PM, PST

Parent’s Note: Day Zero – Transplant Day

Executive Summary:

This was a big day. I hesitate to use the term ‘mission accomplished’ but that’s more or less what happened today. Keith was re-united with his stem cells and now begins the real work, the long wait for his bone marrow to roll out the red carpet welcome mat and invite these VIP cells to set up shop and get back to business. He is now resting comfortably and we are hoping for - and expecting - an uneventful night ahead.

The Rest:

Keith started this day on a great note – in the morning he was very animated and talkative – it was good to see him feeling happy and Keith-like. We were all excited on one hand by the importance of the day, yet trying on the other not to make too big a deal of it so that Keith would not feel anxious. By late morning a flurry of activity just outside his door signaled that the transplant was near. His stem cells, the total collected over three separate procedures had all arrived, still frozen from their stay in the liquid nitrogen motel. Keith’s lead BMT physician held up one of the flat metal sleeves with the cells still inside for him to see, dripping with streams of white vapors like witches’ brew at a Halloween party. One by one each of the five containers were unsealed and the contents, already in IV bags, were thawed in a water bath, hung on the IV pole and given back to him through his central line.

What followed was a bit less straightforward than we or the medical team had been expecting. Keith began to feel sick (expected) but his blood pressure, heart rate and blood chemistry soon started to swerve out of acceptable ranges (not expected). Suddenly there was a whole lot more attention being paid to Keith to try and figure out what was going on with him. There was tension in the air, no question, but the medical staff was quick and well equipped to handle the situation. After several tests over the next couple of hours the doctors began to relax a little, allowing us to relax, and the test results ultimately seemed to indicate everything was ok.

By mid afternoon he began to get the upper hand on his twitchy stomach and his vitals stabilized but he was pretty spent both emotionally and physically. He just wanted to curl up and watch TV without much talking, certainly not about medical stuff. Tomorrow is a scheduled rest day for him and as far as I’m concerned, he’s entitled to it.

I’m not cutting the same slack for his stem cells – they’ve had plenty of time to rest……it’s time for them to suck it up and get to work.


We know that there are so many friends and family tracking Keith’s progress, especially on this milestone day. Knowing your thoughts are with Keith is a great comfort to his parents and to him. And because many of you are interested in the events of this day, I’ll stop typing and get this posted - forgive the typos….

THURSDAY, MARCH 08, 2007 10:41 PM, PST

Parent’s Note: Day +1

If you look at the bright side, Keith is one day closer to being discharged, but the poor kid just wasn’t in a celebrating mood today. His body has had so many assaults on it lately he quite simply is not feeling good at all and has very little energy right now. I try not to focus on negative topics in this journal but today was a day where he faced three additional unpleasantries:

Unpleasantry # 1: He developed a moderate fever of 103 degrees today. It’s not clear what the cause is but he’s now on antibiotics and multiple blood cultures have been drawn to try figure it out. It is also not unexpected, it’s just we weren’t expecting it to happen so quickly.

Unpleasantry # 2: The promised mouth sores have indeed appeared and so talking for Keith is a little difficult and he needs constant pain relief. He is using small nods and eye movements to communicate whenever possible. Eating - well, it just isn’t happening right now. It’s a pretty safe bet that his entire GI track is sore as well.

Unpleasantry # 3: All he wanted to do was sleep today – after all it was a “rest” day. Unfortunately he didn’t sleep well at all last night, and trying to sleep in the room today was even more difficult for him. In part it was due to his fever and a lot of necessary nursing activity but also something you wouldn’t necessarily expect: construction noise and vibration. LPCH is completely renovating the floor below into a new cancer center which is great. However, it would seem the only tools they are allowed to use are roto-hammers – very noisy. At one point Keith asked for ear plugs to help cut out the considerable noise (as a matter of full disclosure, I’m not an innocent bystander on this topic, as design and construction is my craft).

He’ll get through this in time but it’s really hard right now and not a lot of fun as you can imagine. The only comparison that comes to mind to describe what he’s been through and what is to come is something like the image of dragging yourself across the finish line of a full marathon, exhausted, only to line up again to start another one.

He did end the day on a brighter note – his fever lowered by a couple of degrees and he perked up enough to watch part of “Survivor” on the television.

FRIDAY, MARCH 09, 2007 10:41 PM, PST

Parent’s Note: Day +2

Keith had a relatively peaceful day today and everyone is doing their best to just let him sleep as much as he needs. There were several times when he perked up enough to lie quietly and watch TV for a while - then it was back to sleep. He continues to communicate using hand gestures and nods whenever possible and the nurses have picked up on this, doing their best to get the feedback they need without causing Keith any unnecessary discomfort.

Unfortunately he hasn’t been able to shake the fever he's had since yesterday but on the whole he seems a little more comfortable, so we’ll call it a pretty good day.

SATURDAY, MARCH 10, 2007 10:41 PM, PST

Parent’s Note: Day +3

Turns out Keith’s lead doctor is a mass murderer.

Ok, how’s that for a dramatic opener? Well, it was a quiet day in the BMT unit as weekends tend to be, at least from the physician’s perspective. Many if not most of the doctors here have clinical, research and teaching responsibilities during the week in and around Stanford. So Dr. W., the head of the BMT program here, spent about an hour with us in Keith’s room – not because of medical necessity – but just because he wanted to. We wound up talking about a wide range of topics including our crazy youths (he was a cabbie in NYC at one point) to ‘jackalopes’ in Nebraska and current architecture trends to name a few. At one point he looked over to Scott and asked what it was he was playing so intently on the computer.

Dr. W: “What is that you’re playing?”
Scott: “It’s called World of Warcraft.”
Dr. W: “So what is it that you actually do in World of Warcraft”
Scott: “Well, right now I’m just going around and killing things.”

You can imagine how proud I was at that moment, and it was this exchange that led Dr. W to reveal his dark side – his homicidal side.

I continued on saying “I don’t suppose you could even consider playing this game, having sworn to the Hyppocratic oath.” to which Dr. W responded “Oh, I took the oath all right, but I’m a cold blooded killer just the same. If I had to add up all of the cancer cells and bacterium I’ve killed it would probably total in the quadrillions. I’m a confessed mass murderer.”

There you go. He’s a psychotic killer when it comes to cancer cells. That got me to thinking of a couple of things: A) this is the right guy for Keith to have on his team, and B) maybe if I just imagine all of Keith and Scott’s ‘enemies’ in WoW as cancer cells, I might not be so offended by the actual game-play….


Of course we also talked about Keith. At the time he was sleeping, but Dr. W. explained that unfortunately what Keith was going through was par for the course. “We’ve become really good at treating this disease – we’ve just not figured out how to keep kids from feeling rotten during the treatment. We’re still working on that.”

Keith is suffering from primarily from Mucositis, a condition caused by the intense chemotherapy he received that has resulted in a breakdown in the lining of his entire digestive system. This is likely the primary cause of his fever. Because the lining of his GI track is raw, bacteria now have a free pass to get into trouble. There is also a growing concern he has some sort of opportunistic fungal infection, and if his fever doesn’t break soon he will begin receiving medications that target that cause. All day long his fever has been hovering around 103 and even as high as 104. Everyone would like very much to see it dissipate.

As difficult as this is for Keith, Dr. W. indicated he wouldn’t be surprised if it got slightly worse before things started to turn for the better. On top of that it looks like any improvement won’t happen for at least nine or ten more days which is the absolute earliest his own immune system might be in a position to begin fighting for itself, allowing Keith to begin mending again. Again, Keith is not swerving outside of what is expected, it’s just a reminder to everyone that if you can avoid going through a BMT consider yourselves fortunate.

Keith is very sore and thankfully he is on continuous pain medication – he appears to be mostly comfortable, although very, very sleepy and weak right now. I just wish we could fast forward through this period.

SUNDAY, MARCH 11, 2007 10:36 PM, PDT

Parent’s Note: Day +4

I wish I could report some significant positive developments today but alas it’s more of the same for Keith. His fever did break for a few hours overnight but returned again during the day, so it looks likely he will begin to receive additional medication to target fungal infections. He received a unit of blood last night and probably platelets tonight – all normal for this protocol. In fact, he should start to receive transfusions daily as his system continues to chew up platelets and red blood cells. He is receiving daily GCSF infusions to entice white blood cell growth, but it will be quite a while before we start to see any results. Apart from these highlights, Keith again spent the day very quietly, stoically and bravely – only occasionally opening his eyes and directing his gaze over Scott’s shoulder to his computer screen in an attempt to escape for a moment or two.

MONDAY, MARCH 12, 2007 08:11 PM, PDT

Parent’s Note: Day +5

A quick entry while I still have an internet connection.

Keith seemed to have a better day than the past two. His fever is still hanging around so indeed he was started on the anti-fungal meds. Perhaps the medication is having an effect because there were periods when the fever lowered and he seemed more alert and engaged, sitting up in bed and watching cartoons for most of the afternoon.

His liver and kidney function checked out ok and the physicians are quite pleased about that, as are we. So all in all, things seem better today although there is still a long way to go.

Keith received a wonderful art poster from his Wagner Ranch schoolmates depicting all sorts of sea life. It is now hanging on the wall opposite his bed so he can enjoy looking at it. Thanks to all of the artists!