TUESDAY, FEBRUARY 27, 2007 11:56 PM, PST
Interesting how we’ve all become accustom to the immediacy of the internet. Last night I was without such a connection so wasn’t able to post this entry at the usual evening time slot, so here it is – posted from an internet enabled location, albeit 12 hours delayed.
Parent’s Note:
Keith is settled into his room in what is referred to as Two North, the BMT unit at Lucile Packard. It was a long day starting with the usual routine measurements taken at the clinic at 10am – height, weight, lab draws etc. Next Keith had a couple of chest x-rays just to make sure everything was where it was supposed to be I suppose. We were then given a hall pass to leave and return at 2 so we headed out to find some lunch ‘off campus’ (ie: at the Stanford Shopping Center). Keith enjoyed a crab cake sandwich, a pile of fried onions and a huge turtle sundae, declaring his lunch selections to be quite worthy.
Back to Packard at the appointed hour, we met with Keith’s physicians to go over any questions and then signed the consents. This was the first time Keith in all of our treatment so far was asked to sign the consent as well. He very carefully read every word, seemed satisfied, and penned his name in the appropriate blank.
Keith was scheduled to be admitted and taken up to the room next, but it turned out that the room wasn’t going to be available until sometime after 6. So again we grabbed our hall pass and escaped with Keith in tow, this time exploring a small museum and zoo in Palo Alto and later stopping by Border’s to buy some “Get Fuzzy” comic books for Keith’s entertainment in the room. We wound up having dinner at an Italian café of Keith’s choosing along University Ave and again Keith really enjoyed his pasta selection, calling it ‘magnificent’.
Back to the hospital around 7 to find out the room was still not available, but by 8:30 we were finally in the room. So despite the delays, we had a great day with Keith and enjoyed some quality time with him. He was fun to be with, never complaining or sulking about what might lie ahead. He’s been very much living in the present and that seems to be working for him.
When I left him with Josie at around 10:30pm he was comfortable and as happy as one can be given the situation. He should be given hydration overnight along with a couple of other medications in preparation for his first day of induction on Wednesday.
Meanwhile, Scott, along with Annie and Don are holding down the fort in Orinda and they all seem to be functioning very well. I think the logistics will work out well for the next couple of weeks.
All systems are go.
WEDNESDAY, FEBRUARY 28, 2007 11:34 PM, PST
Parent’s Note: Day -7
After a slow start yesterday, things have “kicked up another notch” to use an over used Food Network celeb’s catchphrase. No more wasting time, it’s down to business here. Keith started the first of four consecutive days of high dose chemotherapy today promptly at 9am this morning after a lightning quick hydration period (by our standards). I’ll get into more of that in a bit.
First of all, we’ve had to learn some new conventions – things aren’t necessarily done the same way here as at Children’s Oakland. Nomenclature terms to assimilate: This is “Day -7” (minus 7) to the “PBSC” (peripheral blood stem cell) infusion (ie: the transplant). That establishes the actual transplant date as next Wednesday, or “Day 0. Yesterday was “Day -8” and tomorrow will be “Day -6”, you get the picture. After the transplant, the days are referred to as +1, +2 etc. There are other small differences: different dressing change techniques, different lumen caps (the ends of his 2 central lines from which labs are drawn and IV fluids are given), different names for some of the same drugs he has been receiving etc. Nothing really major, but we’ve become so used to doing things a certain way that we find ourselves second-guessing ourselves a lot.
So back to his current chemotherapy induction. He’s receiving three drugs this time around: Melphalan, Carboplatin and Etoposide. Two of the three are the same or similar to drugs he has had before (Carboplatin & Etoposide). Melphalan is a new drug for him, and from what we have gleaned from the physicians, it’s the big gun. Many cancers, but particularly neuroblastoma tends to become resistant to drugs quickly, so they are much less effective after repeated use. The idea of holding back and ‘surprising’ any lingering neuroblastoma cells with a new toxin is key. At the high levels he is being given, the objective is to completely rid the body of all remaining tumor cells. (I have to admit, at first I confused Melphalan with the common garden pesticide Malathion, although I suspect they have their nasty similarities when ingested….This is also why I’m not a doctor…).
He will complete this chemo cycle on Saturday and then will “rest” until Wednesday, the day he gets his own stem cells back. More on that some other time.
As for the rest of the day, Keith entertained a nearly constant stream people through his room – lots of medical team members of course, a couple of therapists (dietary & physical), the school director, his social worker, two singing ensembles from nearby schools, along with a few familiar faces. He’s pretty wiped out right now but he had a good day overall and we are very proud of how well he handled himself in front of so many strangers – he was polite & engaging which, sorry to say, is not necessarily his strong suit. Under the circumstances he held up very well.
His room is actually quite nice, and that is a great relief given how long he will be in here. It is immediately across from the nurses’ station, but an air-lock vestibule prevents most of the outside noise from getting into the room. The usual complement of medical electronics and gadgets adorn the room, but we’ve added a few ourselves. The list of electronic entertainment includes the usual wall-mounted TV, but there is a built in DVD player so he can watch movies of his choosing if he feels like it. We also brought his GameCube console at the recommendation of his social worker from home and it is now plugged in and operational so he can play some of his favorite video games like Kirby’s Air Ride (no kidding, there is a Japanese cartoon character named Kirby, so of course Keith likes it a lot). There’s also his laptop computer and his hand held game device as well. So he’s about as well stocked entertainment-wise as one could hope to be. Still, he’s also been enjoying reading many of the books brought from home and we have a few more traditional ‘analog’ types of entertainment that should keep him (and us) sane for a while.
As he was falling asleep tonight, in a rare moment of fragility, he asked for one of his favorite stuffed animals. We brought several of them with us only to have them banished to the vestibule outside of the room for not being hygienic enough. Mind you they endured an hour in the dryer on high and were sealed in a plastic bag before we left home – I think whatever might have been lurking in them is long gone now. Anyway, there seems to be a difference of opinion amongst the staff – the day shift seems to say no, the night shift is more lenient, and agreed it was better to ask for forgiveness in the morning than to see Keith upset during their shift. A small but important victory. So he is now quietly sleeping with Moon Bunny, his first and oldest stuffy friend, at his side just as he has been for the better part of the last ten years.
Tomorrow we are going to try and butter up the staff for a feather mattress on Keith’s bed……
THURSDAY, MARCH 01, 2007 10:23 PM, PST
Parent’s Note: Day –6
I’m not sure if someone or something is trying to communicate with us, but there have been two recent natural phenomena that seem to require some mention. First, on Wednesday morning as I was driving back from Palo Alto to San Francisco along Interstate 280, after admitting Keith only 12 hours earlier, I witnessed an amazing rainbow. It was one of those double, full arc types set against a dramatically dark and ominous sky. Coincidently, it also happened to be one of the most scenic sections of the interstate, paralleling the San Andreas rift zone, and the rainbow actually appeared to straddle the valley and the fault itself. No question it was beautiful and it took all of my attention to keep the car moving, let alone in a straight line – I just wanted to stop right there in the middle of the freeway and admire it. Of course, it didn’t take long before the visage faded and I was navigating through an extremely heavy squall, again requiring my full attention, but in a different way. Then, nearly as quickly I was in the clear on the opposite side of the storm and to my surprise yet another rainbow appeared, only this time against a white cumulonimbus backdrop.
The second experience happened just a few minutes ago as I was sitting down in the kitchen with Ann, Don and Scott to start this entry, forcing me to rethink this entire entry. A significant earthquake rattled the house for 5 or 6 seconds. It appears that it was a magnitude 4.2, which by USGS standards is a ‘light’ earthquake. What makes this one significant is how close the epicenter was to us – only a few miles away, making it ‘feel’ very much stronger and it really did wake us up if not shake us up. Tonight's Earthquake and Intensity Map (our house is right where the red star is on the map) No damage, excluding our nerves.
Anyway, I have formulated my own interpretation of these events and I will leave it to you to formulate your own if you so choose.
*******
Last night I spent a mostly restful night with Keith - as restful as it could be with frequent nurse visits. Keith woke up this morning feeling well and surprisingly full of vigor, and enjoyed a decent breakfast comprised of hash brown potatoes and hot chocolate. He remained chipper and chatty for most of the morning, then had a mid-day sinker, only to rebound later after a nap to enjoy the late afternoon and evening, calling Scott (now officially 14 years old) a couple of times to encourage him to get ‘online’ and play with him. The lead BMT nurse who has cared for kids like Keith for some 20 years was amazed that he was feeling as good as he was, saying she had never seen a kid do as well this far into such a strong chemo cycle.
On the entertainment front, yesterday it was singers, today it was the winner of “Survivor, Cook Island”, Yul Kwon, who made an appearance and chatted with Keith for a while. Alas, I wasn’t around to witness it and I must confess that I lost interest in “Survivor” after about the sixth season. So I never followed Yul’s island pursuits, but it’s still pretty cool that he stopped by to cheer up Keith …..Survivor Cook Island winner
Lastly, for those who wondered what Keith’s stuffy friend Moon Bunny looks like, here he “mint in box” as he probably appeared about 10 years ago when Keith first befriended him. Moon Bunny
.
Oh, the day shift gave the nod to let Moon Bunny stay in the room.... makes me wonder if there is some connection between that and how good he is feeling right now.....
FRIDAY, MARCH 02, 2007 09:32 PM, PST
Parent’s Note: Day -5
What a trooper.
Keith put in another hard day at the office but has been able to stave off feeling really lousy to this point with just a few sinking moments. The doctors and nurses all say he is doing really well. That said, it is clearly getting harder and more difficult for him. He’s really not eating much, is sleeping more and is starting to feel ‘weird’ as he puts it. I suppose at some point all of the chemo-toxins he’s getting will overtake him – at least that is what is predicted.
We did open and play a new board game in the room today: Cat-opoly. Yep, it’s Monopoly re-tooled around a feline theme, and boy did he enjoy moving his cat food can shaped game token around the board collecting all of the different cat ‘properties’.
After the last couple of days of visits by entertainers, I was half expecting the circus to roll through here today but it was quiet for the most part. A “Survivor – Cook Island” bandana now hangs on the wall of Keith’s room from yesterday’s visit. It is inscribed as follows:
Keith,
It was awesome meeting you. I’m glad I played Survivor rather than going up against you in Warcraft and getting my butt kicked. Best of luck and get better soon!
Yul Kwon
SATURDAY, MARCH 3, 2007 11:34 PM, PST
Parent’s Note: Day -4
Scott and I are spending the night at a cottage in Portola Valley, near Palo Alto. Josie is spending the night with Keith at Lucile Packard. Annie and Don are spending the night with Kirby in Orinda. Are we messed up or what? Seriously, having access to this cottage is a huge help for us, relieving us of long drives back and forth every day and we owe thanks to a very generous family here.
Only 4 days left to the transplant and Keith is still hanging in there. To my eye he seems about the same as yesterday – mostly comfortable with intermittent sinking spells. Still it’s remarkable given how much nasty stuff has been pumped into him. The doctors continue to be impressed and amazed. He’s been receiving continuous chemo for the past 3.5 days and will finish his fourth and final day Sunday morning. On this last day of chemo the protocol calls for only Carboplatin and Etoposide, no Melphalan, so he’s already catching a bit of a break.
What follows might sound a bit clinical so apologies in advance. I just think it is useful for everyone to know what is going on and coming up. Here is the countdown schedule to the transplant:
Sunday, Day minus 3: Rest
Monday, Day minus 2: Rest and discontinue his antibiotics
Tuesday, Day minus 1: Rest
Wednesday, Day 0: Transplant day.
This current and final chemotherapy cycle is designed to rid him of any remaining tumor cells while also making room inside his bones for new blood making cells to re-engraft. The doctors likened this to clearing a field of all weeds and plants down to bare soil so that the new seeds that are planted have the best chance of growing. His stem cells are the seeds and the GCSF is the fertilizer so to speak. Because this is such a high dose cycle, the side effects will be amplified and he will most likely not feel very well for quite a while.
Keith has been receiving his antibiotics through IV infusion for the last few days, which to his relief means he doesn’t have to swallow a bunch of pills. Sometimes just the thought of swallowing a pill can set him in to a tailspin so this has been a great help to him. What is interesting and somewhat non-intuitive is that he will need to stop taking antibiotics soon because of their propensity to depress bone marrow function - this just when he probably needs antibiotics the most because of a lack of any functioning immune system. I suppose he will get some sort of antibiotic treatment if he does develop a fever or infection (and we hear it is inevitable), but it sounds like when this happens it might prolong the time it takes for his stem cells to take hold and start producing blood products again.
What happens on transplant day is actually relatively easy. The three separate stem cell harvests that have been collected from his own blood and marrow over the past few months will be thawed and infused back into him in much the same way as he has received so many transfusions – painlessly through his central line. He will then start GCSF to encourage white blood cell growth again. At best it could take a couple of weeks just to begin to see some sort of response suggesting engraftment. It will take much, much longer before he has anything approaching a functioning immune system.
So far everything seems to be tracking as planned if not better than planned. Our plan, and we’re sticking to it, is to keep it that way.
SUNDAY, MARCH 04, 2007 10:03 PM, PST
“Can I try some of that pasta?”
“Mmmm. Can I have some more?”
“That pasta is really good.
The sauce is divine.”
“Can I have some more? I feel my appetite coming back.”
“You need to get some more of this…”
Keith, reminding us how much good food means to him.
Parent’s Note: Day –3
Only three days to transplant. Today Keith finished his fourth and final day of his seventh and final planned cycle of chemo, a big milestone to be sure. He is still getting IV fluids, but it’s nice to get all of those ominous biohazard bags out of the room and it’s a big relief to finally realize that chemo is behind us even though he will surely feel worse before he starts to feels better again.
Josie took the opportunity to escape from the room soon after Scott and I arrived this morning. She headed off on foot to the nearby Andronico’s market (for those of you not familiar with this brand, think Whole Foods +.” While she was out, Keith unfortunately had his first and only episode of nausea so far, which led to a request for Benadryl to calm his stomach. Benadryl is an automatic sleep inducer for Keith and sure enough it was lights-out for nearly two hours. Keith awoke looking much better and soon realized that Josie had returned with a small tub of prepared pasta and he asked to try it. It was a thin noodle pasta with artichokes in a lemon cream sauce and beginning with the first bite it seemed to transform Keith from weak and weary to spry and spirited. We were all amazed at its apparent rejuvenating powers.
Buoyed by his new found strength, he asked if anyone wanted to join him in a “rousing game of Cat-opoly” to use his words. So the four of us set up the board game on the tray table over his bed and within an hour or so it became clearly apparent who was to emerge as the dominating force – Keith. He was soon to become the hands down the winner, developing his cat properties with litter-box houses and fish bone hotels. One by one his would-be challengers faded away as his money stack grew and grew, stuffing more artichoke pasta into his mouth between turns. It was good to see him enjoying himself as well as nourishing himself.
Around 5pm, after Scott and I left for Orinda, Josie and Keith left the confines of the room to explore the roof garden above LPCH. The two of them along with the IV pole headed up the elevator to the roof and into the great outdoors for a while. I think Keith was somewhat reluctant to go at first, but really enjoyed it once he was there – lots of trees, flowering plants and hidden benches. Keith lay his head on Josie’s lap for twenty minutes or so, watching the afternoon clouds watch him. Back in the room, he seemed physically spent and soon he cozied up in bed with another dose of Benadryl.
Before he fell asleep, he must have reflected on the day to Josie and how it felt to actually enjoy food again uttering this little gem:
“What I could really use is a big pot of beef bourguignon”
“Uh, not that I could really eat it.”
MONDAY, MARCH 05, 2007 09:12 PM, PST
Parent’s Note: Day -2
Today was a scheduled rest day for Keith and that’s just what he did. He didn’t really feel like doing much else - not much in the way of food intake nor activities, just a few DVD movies and lots of sleep. He had a bright moment or two but they were few and far between as the chemo seems to be having its expected effect. Still the doctors say he is tracking right on course so our plan is still intact.
He is now off the IV antibiotics, but in their place he has started IV nutrition that will go on for some time until he is ready and able to eat normally again (I figure because we have an IV pole here in the room it needs to be used for something). If Keith had the build of a linebacker he could afford to lose a few pounds and not think much of it, but unfortunately we didn’t bless him with those genes and he doesn’t have a lot of spare pounds to give away. In a couple of days we expect his blood counts and ANC will plummet and we will need to begin observing the protocols for a very sterile environment. He will be restricted from leaving his room and will need to move to a low microbial diet (if he feels like eating at all). The days of feasting from Andronico’s deli section will need to be put on hold for a while.
His plight reminds me of the story of Tantalus – forced to stand in a pool of refreshing water with low hanging fruit above condemned never to be able to enjoy the pleasures of either. Similarly, Keith is so near good food and will not be able partake. Fiendish punishment if you ask me for someone who enjoys food so much. And what did he do to deserve it? Tantalus boiled up his own kids and served them to the Gods so he sort of deserved his punishment.
I’m not aware of anything Keith has done that is quite so egregious……
TUESDAY, MARCH 06, 2007 09:03 PM, PST
Parent’s Note: Day -1
Keith slept through the night restfully but went through a pretty rough spot in the morning. The chemo appears to be doing its work but that doesn’t mean it feels good at all. His IV rig has now been customized to incorporate a pain-med pump that he can control with a press of a button, so when he needs some pain relief he can do something about it for himself. The good news is that he seems to rebound after mid-day and that’s just what he did again today. Even though his energy level is pretty low, he managed to take one last jaunt outside his room before he is sentenced to room confinement for the next month or so.
During the ups of his ups and downs, Keith continues to enjoying watching DVDs, reading (and being read to), and playing board games. He especially looks forward to visits by the child life specialist, Kristin, who helps take his mind away from being in a hospital room by playing games and offering other fun distractions.
Tomorrow (Wednesday) is the big day, the day he, along with our entire family of medical professionals has been working so hard for.
Day zero.
The transplant.
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 
