SATURDAY, SEPTEMBER 30, 2006 10:20 PM, PDT
Keith feels rotten but he’s home again. He returned around mid-day today after spending the night and morning at the hospital. In retrospect the extra time there was important because he was able to stay hydrated with fluids through his IV for the 24 hours needed to clear all of the residual toxics from the chemo. If he had come home with us last night we wouldn’t have been able to get him to drink enough just because he felt so crummy.
He got sick three times during the day today. The first time occurred at the hospital just as the attending physician and resident were working over Keith for the final time before discharge. When Keith let go, the doctors actually dove for cover while Josie grabbed the pink bucket! Poor Keith had been trying so hard not to get sick for fear of having to spend even more time at the hospital and sure enough just like clockwork he barfed at the last moment just as he was being readied to leave. Unlike yesterday though, he was given the green light to go home anyway much to his relief.
At home today he was still was feeling lousy for the most part and spent the afternoon confined to the sofa. There was the occasional smile here and there but he seemed extra fragile. Just trying to get all the scheduled meds into him was impossible because he just wasn’t up to swallowing those big gel-caps (yep, we’re back to having to fill them again) so we felt like we were always behind rather than ahead of his nausea.
On the positive side some good news to report: Keith’s home with Scott and gets to sleep in his own bed tonight; Kirby's meow seems much more cheerful; and add to that the long list of yummy food he has requested (artichokes, beef bourguignon, panini and chocolate cupcakes) and things are looking up for a better day tomorrow.
Lastly, I think it's amazing that he was able to lead
SUNDAY, OCTOBER 01, 2006 10:45 PM, PDT
“Bllllluuuuuuggggghhhhhhh….. Ok, so now let’s make cupcakes. hic...” Keith
Sometimes all you can do is laugh. Keith, bless his heart, blurted out this gem just after losing his French toast breakfast. So guess what? We made cupcakes. Well actually after thumbing through Alton Brown’s “Just Here for More Food” cookbook we decided on chocolate-chocolate chip muffins instead. We all agreed it was a good choice.
It is amazing his nausea doesn’t seem to dampen his interest in food or his appetite. And even better he didn’t get sick the rest of the day, so maybe we are done with this chapter of this course of chemo for now. He did actually feel better today as evidenced by his interest in playing board games, video games, and “see what I can get my dad to do” games – the latter triggered by watching a special on TV featuring life in China, leading to an interest in Chinese food, leading to “…. we have pot stickers in the freezer…”, leading to orders from the Patient Himself for me not to return home from work without pork buns from Chinatown in San Francisco. Who am I to argue? Sounds good to me too.
Here’s a snapshot of what Keith had to endure on a quite Sunday home from the hospital:
Change the dressing on his Broviac (ouch)
14 pills to swallow
7 injections into his Broviac
He has been having a lot of hiccups recently and of course wanted to know what causes them and what purpose they serve. This led us to search the internet for the ‘answer’ and it would seem that hiccups have been documented to be a side effect of chemo in about a third of patients. That would be Keith it would seem.
MONDAY, OCTOBER 02, 2006 10:05 PM, PDT
We weren’t expecting today to be as rough as it turned out to be for Keith. He woke up feeling fine but soon started to feel very ill to his stomach. After being sick several times and unwilling to allow us to draw his labs or for that matter give him any more antiemetics, the clinic directed us to bring him in so that they could administer IV fluids and get some of the meds in him that he desperately needed.
We were at the clinic from late morning to early afternoon and Keith got all of the necessary meds and fluids. They did the labs there and the results showed that after just 2 doses of G-CSF Keith’s ANC had bounded up to over 23,000 – remember normal range is between 1,500 and 8,000 – so he really overachieved here and we’ve been told to stop the injections for now. Still he continued to get sick several more times at the clinic and after we returned home as well although he seemed in less agony than earlier in the day. His appetite remains strong, he just has a very twitchy stomach that hopefully will calm in the next day or so. All indications point to the Cisplatin as the culprit for all of this. It’s a great cancer fighter, but has so many negative side effects it’s scary.
We’re all a bit tired and it goes without saying Keith is exhausted. Crossing our fingers for a better day tomorrow….
Keith opened a very special gift yesterday. The card inside read as follows:
This Quilt was made for you by about 50 different people.
Most were made by Moms, who know you and your family from Wagner Ranch or Orinda Park Pool, two were from a family in Oregon that you’ve known since you were born, some were made by your classmates, some were made by people you’ve never met, a few were made by people who had never, ever knit before, one was made by a past teacher of yours, a couple of them were made by your Mom’s co-workers.
And all of them…were made…stitch by stitch…to wrap you up in our Love.
Thank you Sara and Karen and everyone who came together and gave their time, and yarn for Keith. It is a beautiful thing but so much more than just a pretty object. He has spent a great bit of time wrapped in it already (although we’re keeping it at a safe distance until his stomach is calmer), and I’m sure he will always hold it as a bright reminder of the many friends who came together to support him on his difficult journey and his ultimate victory against this unbelievably unfair thing, cancer.
TUESDAY, OCTOBER 03, 2006 10:15 PM, PDT
'You should definitely write that I didn't barf at all today.' Keith
If you’ve read the previous couple of journal entries you will recall that Keith hasn’t been feeling so well since he returned home on Saturday, even though he sleeps through the night and wakes up feeling ok. So this morning Keith woke up happy and hungry again and when he asked if I could make a run to Gepetto’s for an apple fritter before heading for the Bay Bridge we relented saying in effect ‘ok, if that would make you happy’ but really thinking to ourselves ‘great, that will be fun to clean up’…
I dutifully made the quick trip and returned with said fritter. Keith wasted no time digging into it. Apparently he soon noticed his mom hovering around him as he ate it with the now notorious pink bucket not far from her reach as though simply awaiting the inevitable eruption.
So to her surprise and relief, the Duke of Puke didn’t live up to his namesake today. Not only did he keep down the apple fritter, during the course of the remainder of the day he consumed two bowls of soup, a ham, cheese and caper panini, two artichokes, another sandwich – this time a ham, mustard and caper sandwich (with extra mustard), most of a half gallon of milk, a couple of slices of Zamboni’s pizza and some mango juice to top it off. We’re still trying to figure out where all this stuff actually went because there seems no possible way for it all to fit into his skinny body. Maybe someday we’ll come upon a food stash under a cushion and that will explain it…
Now this might not be a truly scientific conclusion, but circumstantial evidence points toward this amazing turn-around as the result of consuming that grease-bomb of an apple fritter! So much for eating ‘lite’ foods to control nausea… Next time we’re heading to Gepetto’s right after the next round of chemo! (ok, so maybe all the medications helped a little…)
So needless to say Keith had a good day and his whole, happy personality bubbled to the surface again. When I asked him to rate his day on our 1 to 10 happiness scale he replied “Today was a really good day. I’d give it a 9”.
Here’s to apple fritters…
11:25 pm. Late update: Keith is having even more apple fritter. He simply can't be stopped...
WEDNESDAY, OCTOBER 04, 2006 11:12 PM, PDT
A non-event day really. Keith spent a quiet day at home engaged in research and study. Now before you get all impressed and what-not, the subject matter was not scholarly and instead involved a Sonic Hedgehog video game…
This might be a good time to update everyone on some of the recent responses to treatment that we have both observed and learned from Keith’s doctors over the past couple of weeks. Just as a reminder his initial diagnosis of stage 4 neuroblastoma indicated he has a primary tumor in his lower abdomen involving the adrenal gland and some other nearby structures that is typical for this disease and staging. When diagnosed the cancer had metastasized to his bone marrow and lymph nodes. Tumors behind both eyes had caused one eye to become visibly pronounced to the point where during his first stay in the hospital he began to actually see double.
The latest CT scan from two weeks ago after 2 courses of chemo clearly indicated that the primary abdominal tumor had begun to recede significantly and of course that is great news. It means that the chemo is working and he is responding to the treatment just as the oncologists had expected. When surgery is performed later on, it should be much smaller and less complicated to remove. Also, his right eye has almost fully receded and he looks normal again.
We will be delaying the stem cell harvest three weeks from what we had originally planned as the last bone marrow aspiration indicated that while one of the two samples came back ‘clean’ the other still showed evidence of contamination. His first bone marrow samples both showed cancer so it’s still a big improvement. The stem cell harvest can’t happen until both samples are clean.
Of course since these encouraging reports, he has endured another round of chemo so the expectation is that he will continue to show even more improvement when the next round of tests and imaging are completed.
Sorry for the mostly humorless narrative. It just didn’t seem appropriate to deliver this information with my usual irreverence. Still we thought you would all appreciate knowing where we stand.
Besides I can only get so editorial much mileage out of Keith’s odd culinary escapades…
THURSDAY, OCTOBER 05, 2006 10:02 PM, PDT
Keith had a good day and we seem to be over the hump with his nausea for now. On the other hand his latest lab results were returned today showing that his blood counts have dropped precipitously but not unexpectedly. We’re scratching our heads over this, but he slipped from an ANC of 23,000 (super-human) to an ANC of 1,000 (sub-human) in just the past 3 days (could it have been the fritter?). So word came back from the clinic to rev up the G-CSF pump and get those white blood cell counts back up. So for the next several days he’ll be in that vulnerable stage where he probably couldn’t win an arm-wrestling contest with a single-celled pathogen. That may be why he seemed to be a bit more tired today and even Kirby with his reverberating 6:30 am meows couldn’t roust him out of bed.
Scott has a big science test on Friday and has been studying all of those physics formulas that most of us (except maybe Sue and Kris) have long forgotten like F=MA and 1
Maybe it’s just me but judging from some of the recent guestbook entries we seemed to have touched a somewhat sensitive (competitive? territorial?) nerve out there…..Keith certainly didn’t intend to start a Hatfield vs. McCoy type feud between rival northern Michigan clans and he certainly wouldn’t want to be the catalyst that caused life-long friendships to sour other over such a trivial thing like bragging rights to the absolute best whitefish spread in the entire galaxy (John Cross Fisheries of course). I suppose the only fair way to settle this would be to have a friendly little ‘taste-off’; a competition of sorts. John Cross vs. Toskey Sands vs. all other challengers judged by, hmmmm, let’s see... someone who has a very discriminating palette, like…Keith!
But I don’t suppose there is any way this could possibly happen…