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….

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