TUESDAY, NOVEMBER 21, 2006 11:04 PM, PST
“I’m happy to be home but I really don’t feel so good.” Keith
Parent’s Note:
It’s late so very briefly:
- Keith is home again and happy about it – no major incidents.
- He’s not feeling so good but hanging in there. Pink bucket is nearby but so far unused.
- Keith’s happy to see Kirby. Kirby’s happy to see Keith
- Meds schedule calls for a midnight and 6am wake up – if we can just stay on schedule the pink bucket stays clean.
- Home nurse stopped by to show us how to set up the IV fluid pump. It comes with a backpack so if he wants to…say… go to the mall he can. 100ml/hr over 12 hours overnight. Planning for at least 2 maybe 3 wake-ups to visit to the bathroom.
- We’ll keep up the meds and fluids for several days. Our plan is to keep Keith comfortable and avoid another trip to the clinic for hydration.
- G-CSF starts up again tomorrow as his ANC is heading south.
- Food network Thanksgiving programming running incessantly in background – already watched Rachel Ray’s 1 hour Thanksgiving dinner show 3 times.
- Keith actually ate a baked potato – hunger is a good sign.
- Scott helped Keith get through the morning at the hospital – thanks Scott.
- Keith held himself together pretty well today considering – thanks Keith
- We’re so proud of you both.
WEDNESDAY, NOVEMBER 22, 2006 09:50 PM, PST
5:00 AM
Pre-dawn muttering from Keith in a slow deliberate voice: “I …Want… An… Egg…”
Parent’s Note:
His pronouncement reminds me of a weird scene in Men in Black where the ‘Bug’, after climbing out of the smoldering impact crater left by his space ship, slips into the unfortunate farmer’s skin and pounds on the nearby farmhouse door demanding “Sugar, I… Want… Sugar...”
He never asks for eggs. OK, well, there was one other time and interestingly that occasion was also just after arriving home from a chemo cycle a while back. Unfortunately, before we could actually prepare the requested ‘egg’ he puked so I don’t thing he actually partook of said ovum.
Anyway, this time he got his egg and fortunately for us we didn’t have to get skinned in the process. Hardboiled….with ketchup…and
Hmmmm….. could this be the key to getting Scott to warm up to a green vegetable or two?
The bottom line is that Keith has managed to keep his head above water all day, cooperating when he needs to take his medicine – all 16 +/- pills, IV drip and a G-CSF infusion. I’m now a firm believer in the old axiom “An egg a day keeps the ol’ barf bucket away….”
* * * * *
Despite what has been a very tough time for us as a family, we are thankful for so many things. Given it is the eve of our favorite holiday what better time to express thanks to all who have helped us get through the hard days. To all who have touched us with acts of kindness, humor, care, concern, nourishment, support, community and guidance, whether through these pages or in other ways, small or large, we are humbled and most thankful. Someday we hope to repay the kindness.
The Kelley family wishes each of you a peaceful and happy Thanksgiving. Be thankful. Enjoy family. Savor life.
.
And have an egg...
THURSDAY, NOVEMBER 23, 2006 10:37 PM, PST
Parent’s Note:
As hoped this was a food centric day for us all but especially for Keith, the eating machine.
The morning started out similarly to yesterday with Keith requesting buttered toast (3 slices) with ketchup (talked him out of that), followed by a hardboiled egg (ketchup, Tabasco & mustard), followed by a waffle with syrup, Chex Mix, a baked potato with bacon, sour cream and green onions (all before noon), followed by a couple of buttered biscuits* and then Thanksgiving dinner: turkey & mashed potatoes* with stuffing*, gravy, root vegetable gratin, cranberry rosemary jelly*, cranberry chutney*, spiced pears*, green beans*, more biscuits* followed by a nap and an IV infusion. He finished off the day with cherry pie and ice cream.
A pretty good turn around from a couple of days ago I’d say.
* Thanks Pam!
FRIDAY, NOVEMBER 24, 2006 10:54 PM, PST
Parent’s Journal
Keith has been getting 12 hour overnight hydration with an IV line and a pump that we hook up before he climbs into bed and it seems to have been doing the trick for the past three days in keeping the nausea at bay. Today was a quiet but good day on the whole. Keith spent most of it lying on the sofa with his laptop nearby and he felt fine until just a few minutes ago. Hopefully it turns out to be a singular incident.
The pink bucket is out again and I’m on duty tonight.
SATURDAY, NOVEMBER 25, 2006 10:52 PM, PST
Parent’s Note:
Last night’s entry ended with a somewhat ominous note but fortunately the remainder of the night was incident free as was today. So chalk up another good day for Keith and a thumbs up for the overnight fluid IV – we think it’s made a big difference in helping Keith get through these tough days following chemo.
The lab samples we took to Children’s yesterday came back pretty good. His platelets and hemoglobin are low but ok and interestingly his white blood cell count and ANC are both much higher than we would expect 5 days out from chemo. The oncology clinic’s suspicion was that the G-CSF might have started too soon so we were told to skip today’s infusion and we will see where he is again on Monday when we draw labs again.
Also on Monday Keith is scheduled for another CT scan, his fourth so far. The results will be available for review when the oncology / surgery / radiology team meet on Tuesday. We should be apprised of how Keith has been responding to treatment and what the recommended next steps are when we meet with Keith’s lead oncologist later in the afternoon. Rounding out the clinical activities of the upcoming week: on Friday Keith will have another bone scan performed.
A while back Keith declared Saturdays to be “Kirby Appreciation Day” in our house. So I asked Keith as he was getting ready for bed what he had done to show his appreciation (since he spent most of the day behind a computer). A momentary wisp of guilt crossed his face and he was quickly off to find Kirby and vocalize his appreciation of him. Kirby was equally quick to put aside the unintended oversight (heck, he was sleeping most of the day anyway) and the two were best buds again before you could say ‘pudgy cat’.
SUNDAY, NOVEMBER 26, 2006 10:34 PM, PST
Parent’s Note:
Keith must have been dreaming about food last night because this morning he awoke with a whole shopping list in his head. His requests were duly recorded and before 8:30am he and Josie were off to Safeway to acquire the food of Keith’s craving. Judging by the contents of the grocery bags when they returned the bakery section was quite popular and it’s safe to say Keith enjoyed this outing quite a bit. Cinnamon rolls, chocolate covered doughnuts, Challah bread to name a few of the goodies. Keith was appalled that I opted out of a doughnut and had a bowl of cereal instead.
Keith and Scott both had friends over and it was good to be reminded of what a house with lots of boys in it sounds like, even if it meant that Kirby had to recede with trepidation into a dark corner for a while.
We brought out a couple of large boxes of ‘cool parts’ collected from years of disassembling outmoded tape decks and other electronics. Between the odd assortment of fans, motors, speakers, lights and wires along with some 9-volt batteries the boys produced some interesting things that whirred and spinned and they seemed to have a good time doing it. A nice break from computer gaming and validation that saving this junk for all these years was worth it.
After dinner Keith was looking for a book to read and picked up one of Josie’s knitting books lying on the coffee table. Keith was at first alarmed and then curious at the coded text:
………..5-st cross: SI 4 sts to cn and hold to back of work, k1, sl 3 sts back to LH needle and place rem st on cn to front of work, k3 from LH needle, k1 from cn…………..
Keith said “You know, I think if they actually spelled out the words they could charge about $2 more for the book and people would still buy it.”
Now, not one to let an opportunity such as this pass, a chance to convert yet another to the indescribable wonders of knitting, Josie was quick to offer her services and some hands on training. Sure enough, it looks like Kirby might just the lucky recipient of a swamp green scarf knitted by Keith. At least the first row is done....
Now is that cat appreciation or what?
MONDAY, NOVEMBER 27, 2006 09:58 PM, PST
Parent’s Note:
Keith woke up in pain complaining that his back hurt. He’s become pretty tolerant of pain but this clearly was outside his comfort zone and he was pretty miserable. We quickly got a dose of Tylenol into him and placed a heating pad under him and within 15 minutes he was comfortable again.
“How do you feel?”
“Good”
“Did the heating pad help?”
“Yes”
Later after he got up I realized that the heating pad wasn’t actually turned on. The Tylenol must have done the trick because the heating pad was at best only a placebo effect. Of course we were relieved he recovered so quickly – presumably only a muscle pull or the like.
Mondays are lab days, so I drew Keith’s samples and dropped them off at Quest Diagnostics where there is a standing stat order. The results were faxed back 3 hours later and his counts were way down in all the key categories. White blood count low, hemoglobin low, platelets low, ANC essentially zip. The surprise isn’t so much that they were low (it seems to be the normal pattern following chemo) the surprise was how quickly it happened. Just three days ago his ANC was almost 11,000.
The low counts also mean that tomorrow (Tuesday) Keith will be expected to show up for another visit to the day hospital at Children’s to get blood and platelet transfusions.
Monday afternoon’s CT scan went pretty much as planned. Keith consumed as much of the contrast fluid as he could (which is to say not much) but what was to be a 3:00 scan turned into a 4:30 scan.
.
So please pardon me for this semi-cynical observation…. it seems that as a medical patient the assumption is your time just isn’t valuable and it is somehow ‘ok’ to be late for an appointment by an hour and a half. Still we keep showing up time after time. I know if I made my clients cool their heels in our office waiting room for an hour and a half they would be clients no more.
The silver lining, if there was one, was the aquarium in the corner of the waiting room. When Keith realized that there was no outlet to plug his laptop into he was forced to look for an alternate form of entertainment. Upon closer inspection the aquarium was home to a puffer fish! And not just any old puffer fish. This was a dogfaced puffer (arothron nigropunctatus) and it held Keith’s rapt attention for the duration of his extended visit. It must have made quite an impression because it was the subject of much conversation when he got back home. I'd like to believe that this puffer took something positive away from this exchange as well and may now have a new and much improved outlook on those strange humans on the other side of the glass. Keith has this almost Doolittlian gift when it comes to animals.
For all who haven’t seen a dogfaced puffer (including me) here is your chance to put to use some otherwise unused gray matter… Dogfaced Puffer
If nothing else, we try to keep these narratives educational….
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