Sunday, September 24, 2006

September 24th - 29th: Chemo Course #3

SUNDAY, SEPTEMBER 24, 2006 10:13 PM, PDT

Parent’s Note:

Keith is back at Children’s for round 3. We packed up mid morning much to the chagrin of Keith – he thought it would be later in the day. The checklist included the usual overnight necessities plus his Gameboy & strategy guide as well as some photos of Kirby for the wall.

Once there and registered, we made our way back up to the 5th floor and the room where Keith will bunk for the rest of the week. The doctors and nurses went through their usual bedside diagnostics and pronounced Keith quite fit (except for his neuroblastoma) and they all seemed happy to see him again. Keith returned a few forced smiles, not quite as happy to see them again I imagine.

The primary reason for checking in today was to place Keith on a 24 hour creatinine clearance test to measure kidney function before blasting him again with more chemo. All of these chemo drugs are effective cancer fighters but they can take a real toll on the rest of the body. So the day involves sitting around and peeing into the plastic jugs they conveniently provide. No tubes and no pokes which is great, but hey, we could have done this at home!

He will need to stop eating or drinking at midnight and won't be able to resume until after the bone marrow procedure is completed tomorrow midday-ish. We spoke briefly to the doctor who will perform the operation and asked him if he could restrain himself from covering Keith’s backside with bandages and tape as was done the last time – to remove them was much more traumatic for Keith than the procedure itself. He winked and said sure…. Keith’s holding him to it.

So that’s where we are, getting ready for bungee leap #3.

MONDAY, SEPTEMBER 25, 2006 09:11 PM, PDT

“I am awake. I am thinking. I can process information” Keith’s first words after waking up in the recovery room.

Parent’s Note:

It’s about 9 pm as I write this and Keith has been watching Food Network intermixed with endless Steve Irwin reruns ever since the batteries on his Gameboy ran dry. When I asked Keith how his day was on a scale of 1-10 he responded it was a 6. He went on to explain it was actually a good day and the only thing that kept him from rating it an 8 was the bone marrow procedure earlier in the day.

Around noon Keith walked under his own power and completely unplugged to the day surgery center across the street. The anesthesiologist and surgeon both talked to Keith and answered his questions. He was particularly interested in how he was going to wake up. Then he bravely walked with them into the OR and about a half an hour later he was in recovery. When he did come to we were amazed how quickly he regained command all of his senses. He opened his eyes and blurted out the I-can-process-information quote. Josie and I both laughed. He sounded like some sort of android or maybe HAL from Kubrik's 2001: A Space Odyssey.

Another surprise - the recovery room nurse was his friend Wylie’s grandmother Judy who Keith had met on his previous visit. She apparently saw that Keith was having his procedure today and asked if she could be staffed for the day. Keith sure has a lot of great people watching out for him.

The next thing he was interested in was the size of the bandages on his back. Boy was he relieved to find out that there were only two little round ‘dot’ bandages. I guess he must have made his position crystal clear to the doctor yesterday - no large, sticky bandages! He wanted to walk back to his room on his own, but we finally talked him into taking the VIP wheelchair service.

Still no chemo yet but it is scheduled to start as soon as the doctors say ‘go’ which could be any minute now. They are just waiting for him to be well hydrated. Keith is in his usual ‘let’s do it’ mode. The sooner he gets started the sooner it’s over.


Parent’s Note:

Course 3 officially started at 12:30am on Tuesday after Keith’s hydration levels finally hit ‘spec’ and after the 11pm nursing shift had settled in for the night. This means that for the next 3 nights the same routine will prevail so that each of the four doses of Cisplatin and Etoposide are separated by 24 hours. It made for a restless night and will continue to be for the rest of the week because so much nursing activity needs to happen to set up the IVs and administer the anti-nausea drugs. There are also lots of hourly runs to the bathroom for Keith to get rid of the all the fluids that the four IV lines deliver. Now here is something a parent can actually be useful for. Keith weathered the night fine but by morning had a few run-ins with the barf bucket. A little more on that in a bit.

Later in the morning after Josie arrived he was taken down to have another routine echo scan of his heart to make sure all was in order and once back in his room he took part in some arts & crafts activities that were going on in the unit. The rest of the day and into the evening he was fairly comfortable thanks to Zofran, Ativan, Decadron, Benadryl and probably one or two other medications. He slept through much of the remaining afternoon (one of the effects of Benadryl) and we were absolutely fine with it. It’s probably the easiest way for him to tough-it-out over the next few days.

Ok, now I will reluctantly share one my more memorable and pathetic attempts to help Keith in a moment of need. When he first got sick to his stomach around 6 am I rushed to his aide but could not locate the large pink bucket anywhere near, around or under his bed (the room was very dark after all). This is where we usually stow it for just such emergencies. After scrambling around the room for way too long and mumbling some carefully chosen words, and while Keith lay groaning in agony in his bed, I finally found the vessel in the bathroom next to the toilet (again very dark). The race was on to get to a now-gagging Keith in time and so I grabbed the bucket and shot out of the bathroom only to realize too late it was half full of some sort of liquid that had completely sloshed out and was now pretty well distributed all over the floors of both rooms. What if it was….. yuck…. too late now…. (more well chosen words). Finally I made it to his bed just in time for Keith to let go. It’s one of those slo-mo ‘instant replay’ moments that life occasionally affords.

When the lights were finally turned on the liquid appeared to be nothing more than just melted ice water. So disaster was narrowly averted thanks in part to Keith’s stellar marksmanship. The friendly 5th floor mop crew soon paid us a visit, grinning and shaking their heads. Somehow I sensed this was a scene that they had been witness to many times over. Look, I’m sure there was a much better way to handle the situation, but waking up in the fog of sleep deprivation does dull one’s decision-making abilities a bit.

Maybe Keith will smile someday when this is all over as he is reminded of how clumsy his dad was on that morning.

I would be completely ok with that.

I think he has an amazing attitude.


Parent’s Note:

Day two of chemo almost complete and Keith has been feeling pretty good ever since our little pink bucket incidents yesterday. It would be great if we could sneak through the remainder of this week without any more nausea. Not much news – a quiet day for Keith. Of course the night is young and I am on watch tonight so anything could happen.

Here is an observation that I’ve been stewing over for some time now. As you can imagine in a hospital there’s a tendency to want to quantify everything. Everything. Questions like “How much did you drink?”; “How much did you eat?”; “How much did you pee?” are quite common. Weight, blood pressure, temperature, phosphate levels, blood counts and on and on – measure ‘em and record ‘em. Keith’s medical record has enough raw data in it to make any serious number cruncher envious. Everything comes into Keith’s room in nice little measured packages. The nurses like to use the 1-10 scale for things like asking a child ‘how bad is the pain?’ and the like. I could go on but you get the picture. Everything gets recorded. Well, almost everything…

I noticed that they don’t have devices to measure his happiness; or how many smiles he had when he talked with his brother; or how good the Indian food tasted or how good it feels to beat his mom in his favorite card game (again). There is a qualitative component that just goes undocumented amidst the need to capture so many other absolutely necessary clinical things. It may be as simple as there just aren’t any boxes on their forms for these vignettes of happiness.

So I’ve decided to take it upon myself to ask Keith how he would measure his day on a happiness scale. And just to be consistent with hospital standards, we decided to use the 1-10 scale as well.

“So Keith, how was your day today?”

“Well I’d probably give it a 7”

“Wow, that’s pretty good!”


Seven! There must be some sort of grade inflation going on here. I’m amazed that a 10 year old kid, stuck in a hospital room, plugged into four IV lines receiving chemo would consider anything above zero. After he fell asleep tonight I tried to rationalize this wonderful optimism as best as I could and here’s my theory. As parents and friends who have not experienced cancer directly we probably tend to associate cancer therapy with pain and discomfort – a big negative. Keith sees it the other way around. He sees it as a necessary step toward making him well again. Every day the chemo drips, the cancer is beat further into submission.

Ok, so maybe I’m being a little idealistic…we’ll see if when he returns home to Kirby and his friends, he rates those days higher or lower…

One humorous note about Keith’s hospital room décor that’s worth mentioning. First of all it’s actually a nice room and has a window facing west toward the bay with an appropriate boy-themed decorative wall band featuring all sorts of creatures of the sea wrapping around the entire room (funny, it looks a lot like the sidebar of this web page). However, there is a clock on the wall that Josie and I decided had to go the minute we walked in the door. It’s pink. And it’s decorated with Snow White and three other Disney princesses. As if this wasn’t bad enough, it was really loud too, clanking away like some cheap grandfather clock wannabe.

Josie figured it belonged to a previous patient and conspired with a willing nurse to remove the offending device. They eventually pulled it off the wall (along with the paint and some plaster) and dislodged the batteries solving the noise problem. However, fearing that we might be liable for damage to the room, the clock was gingerly replaced, covering the offending holes again. But what to do about the pink Disney princesses? No problem. Josie reached into her bag and pulled out a large picture of Kirby and affixed it to the face of the clock, completely obscuring it. Problem solved.

Are we good or what?


“John Cross Fish Market makes the best smoked whitefish pâté” Keith

Parent’s Note:

Day three of chemo and again Keith has been feeling ok. No big appetite and not much physical activity but no nausea either. Probably the best we could hope for given Cisplatin ( is notoriously nasty stuff. It is still to be determined when he will be discharged. It’s possible it could be Friday night but more likely on Saturday sometime.

We thought Keith might partake in the ‘make-a-video’ activity planned today for the kids on the floor. He seemed interested in it when the volunteers described it to him the day before and we thought it might be a way he could share with his friends his hospital experience. But when the activity time slot actually arrived today he was zonked out in what turned out to be a 3-hour Benadryl induced nap. Maybe we can arm him with a video camera sometime and let him have run of the oncology unit. Not to put any ideas into his head but I’m thinking he could film some kind of role-reversal vengeance scene where Keith gets to rip a sticky Tegaderm patch from one of the male nurse’s hairy arms.

Heather the social worker dropped in to say hi again and hand Keith some more courage beads for all of his procedures over the past three weeks. He enjoyed threading his new acquisitions on his ever-growing strand and it currently hangs from his IV tower next to his bed.

Regarding the pâté comment above, Keith had been looking forward to receiving the four small tubs of smoked whitefish pâté that his Annie and Grandpa Don had shipped from Charlevoix earlier in the week. For those of you who have not had the privilege of experiencing this fine morsel, it is a local northern Michigan specialty that is outstanding spread on crackers and Keith has been a huge fan of it for several years now. On our visit to Charlevoix this past summer Keith asked if he could go to the Cross Fish Market to pick up some for the week we were there. It’s become one of those look-forward-to traditions associated with visiting his grandparent’s cottage. Mrs. Cross was so impressed that a kid would make this a highlight of their day that she gave him a tub of it gratis – he was very pleased. So as soon as the pâté arrived in California Josie brought it to the hospital. Keith couldn’t wait to dive into it even though his appetite was somewhat dulled by the chemo and declared it essentially the best-thing-on-the-earth-at-this-moment, rolling his eyes in enjoyment. We all dug in like a bunch starved dogs and then laughed that Keith was almost surely the only one in the hospital with smoked whitefish pâté in his room.

No offense to the hospital food staff, but Keith has refused to order anything from the menu this past week. He much prefers food from the local Taquerías or the small plastic containers we bring from home that often contain samplers from the great meals that friends have prepared for us. In fact for the second time this week a member of the kitchen staff visited Keith’s room to ask him why he wasn’t ordering anything from the kitchen. Diplomat that he is, he declined to give her the real reason simply saying he wasn’t feeling that hungry. She looked around the room, saw the whitefish pâté and containers from home and nodded her head in complete understanding.

I suppose we should have offered her some pâté.

FRIDAY, SEPTEMBER 29, 2006 11:10 PM, PDT

“When can we get out of here? I want to go home now!” Keith

Parent’s Note:

Day four of chemo complete and Keith is spending the night at the hospital and will most likely head home in the morning. He had been doing so well tolerating the chemo that by late morning the doctors were giving him the green light to be discharged in the middle of the afternoon. So he really got his hopes up. Unfortunately it wasn’t to be. Events conspired against him and what was a day of looking forward to getting back home ended in disappointment.

Things started to veer off course a bit around 4 pm as the nurses were preparing to take him off the IV to discharge him. They found one of the two lumens that make up his Broviac central line was partially obstructed. Keith impatiently asked how much longer this would take to fix – he really needed to go home now! As it turned out clearing it required about an hour and a half. Once this was finished all seemed back on track again, so we packed up our belongings and dragged most of the stuff out to the car in the garage across the street. Unfortunately, soon after that Keith became sick to his stomach. We cleaned him up and while he felt much better afterwards, the doctors felt this was a sign that he wasn’t ready to go home quite yet. Hearing this little bit of news set the low point of the week for Keith and he was quite upset. Maybe in another 2 hours he could go home the resident said hopefully. But soon after that he was given the one-two punch of meds that always seems to knock him out – Benadryl with Reglan - and by the time sleep effect wore off it was too late in the day. It was clear he wasn’t coming home tonight.

Keith later conceded that it was probably better that he stayed the night, because as he put it he “wasn’t feeling 100% - more like 85%.” On the positive side the clogged Broviac line probably saved us from having to deal with Keith getting sick in the car half way through the Caldecott Tunnel. Keeping him overnight was ultimately the right decision, and validates our trust in Keith's caregivers. I just regret putting him through the emotional roller coaster.

Even more alarming, the picture of Kirby that we plastered onto the wall clock in his room was peeled off, packed away and is now home, meaning that the four pink Disney princesses are staring down at Keith once again.

I hope his stomach can handle it…

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