Thursday, January 18, 2007

January 18th - 22nd: A Fever is Bad when You're Neutropenic

THURSDAY, JANUARY 18, 2007 08:49 PM, PST

“You know, you’re right. I feel a lot better after sleeping in” Keith agreeing with his Mom’s recommendation not to climb out of bed at the crack of dawn.

Parent’s Note:

Knock on wood……

What a difference a day makes. Not only was the pink bucket banished to the dusty shadows behind the sofa – never to make an appearance all day, the USPS came through with the object of Keith’s desire – a parcel containing his much anticipated expansion pack for W.o.W.

First his game update.

Well, news that the mailbox held a package with his name on it from Blizzard Entertainment made him ecstatic. The race was on to rip off the cellophane wrapper and pour out the contents. In no time, Keith installed all of the disks, uploaded the patches, launched the game, created a character and jumped into a new realm of fantasy. The screenshot above is the character he created. Nice eyebrows I say.

Name: Kokopuffs

Race: Blood Elf

Class: Hunter

Trade: Leatherworker

Current Level: 10 and climbing….

Happiness factor of operator: Unmeasurable…

As for Keith himself, before heading off to work today I drew his usual labs and dropped them off at Quest. As anticipated his counts have fallen off steeply and his ANC has slid back zero again. It’s time again to be very careful as far as germs go. That said, he is feeling a whole lot better today and showed interest in food once again.

I suppose it is the not-so-good days that make us really appreciate the good days. The mood in our house parallels Keith’s….when he’s happy so are we.

And he is.

FRIDAY, JANUARY 19, 2007 09:31 PM, PST

Parent’s Note:

Keith continues to feel good and we’ve reached the point where we feel we can wean him from his overnight hydration - the first time since his last chemo ended. Despite Keith’s brief Pas de Deux with the pink bucket, the hydration routine provided a huge benefit to making his home recovery as easy as possible.

Of course he spent some time developing his W.o.W. character today. ‘Kokopuffs’ is now level 15 and is accompanied by a nifty fire-breathing pet dragon-hawk named ‘Kokocrispies’. Together they make an imposing pair. Scott is attending a ‘boys’ night out’ event - a friend’s birthday party including a sleepover. That should be a fun and in all likelihood a sleep deprived experience.

Chances are pretty good that we will be making a weekend visit to Children’s for a platelet transfusion with a possible upgrade to both platelets and red blood cells. We’ll see after we drop off Keith’s lab samples tomorrow.

SATURDAY, JANUARY 20, 2007 09:42 PM, PST

“I’m really thirsty……Can I have an ice cube in my chocolate milk” Keith

Parent’s Note:

Not the day we were expecting.

An innocent sounding request to most, but to us sirens, bells, whistles and fog horns blared upon hearing these few words. Out came the thermometer and sure enough he had a fever of 102.5 degrees. For the rest of us 102.5 can be managed, but for an oncology patient with no functioning immune system this is a big problem and can be life threatening if not dealt with quickly. Within minutes we were in the car heading for the emergency room at Children’s.

By the time we reached triage his temperature had spiked to 105 and he was whisked off to begin hydration and antibiotics. He is now admitted overnight and will remain in the hospital until he has a semi-functioning immune system again and that will probably be days from now. Worse, there was no room for him in 5 South, the special oncology unit where neutropenic patients are cared for and so he was placed in a shared room down the hall, requiring him to wear a mask. Now it's not easy to breathe, let alone eat when wearing a mask and Keith wasn’t happy at all with the situation. Thankfully we were told a while later that a room was made available in 5 South for him and we eventually got situated there. Keith finally could remove his mask and relax a little.

As of this writing his temperature has been swinging between slightly elevated and 103 but it seems to be controllable with Tylenol. He will get his platelets when his temperature is stabilized and hopefully the antibiotics will do their job soon. Amazingly, this is the first time in all of his cycles of chemotherapy that he has had an infection so we have been very fortunate so far. I suppose the odds finally caught up with us.

We had planned to make a day visit to the hospital to get a platelet transfusion and the lab draws this morning verified that suspicion. Needless to say this was an unplanned extension of his stay and Keith was not too happy to hear about it as you might expect. To be honest we weren’t either. These next few days were most likely his last break before more intense medical procedures kick into gear and we all were looking forward to this relatively quiet period to catch our collective breaths.

Seems like the ‘law’ caught up with him after his recent break-out and now he’s going to do some more time for it……

SUNDAY, JANUARY 21, 2007 10:31 PM, PST

Parent’s Note:

Keith got his platelets and red blood cells in the early Sunday morning hours and his fever finally broke as well. So today was a mostly comfortable day for Keith in his hospital room and was made more tolerable because Scott spent almost the entire day here being a buddy. Keith’s fever was absent most of the daylight hours but it is elevated once again tonight - though not nearly as high as it was when he was first admitted yesterday.

No school for Scott tomorrow, so Keith is looking forward to spending more time in his cell with his brother.

MONDAY, JANUARY 22, 2007 09:03 PM, PST

I should preface this entry by acknowledging the great nursing staff at CHO. They are kind, funny, smart and compassionate. Whatever they are paid, they deserve more. Ok, so maybe - sometimes - they are a little noisy at night....

Parent’s Note:

I seem to recall as I lay on window bench ‘bed’ in a state of semi-awareness the night shift nurse clanking around his bed. Of course this is not unusual at all. It is one of many interruptions throughout a typical night that we have come to expect as a matter of routine and the reasons for the visits include taking hourly vitals, adjusting the IV pumps and administering meds. These are the usual list of nocturnal chores.

It was the early hours of the morning and the light from the hall filled the room as the door swung open for the umpteenth time. This time she was here to draw his blood for CBC labs and cultures. I suppose it could have been 3am or 6am – neither Keith nor I could recall exactly. But what Keith was able to verbalize later is that it is really, really hard to sleep in a hospital room with all of the clinical commotion and background noise that goes on routinely. It is particularly hard when someone is lurking around your bed in the shadows collecting several vials of blood from your body. Somehow drawing blood in the daylight is ok, but at night it is sort of weird. Vampire-like. “I just couldn’t get back to sleep again after that” sighed Keith. Of course this isn’t the first time this has happened, far from it. It is just one of those interesting observations that hadn’t occurred to me to write about before.

Later, after daybreak Keith’s morning shift nurse stopped by the room and dropped the two pages of his lab results on the bedside table for me. As she turned to leave the room she proclaimed with a little too much gusto “You’ve got a lot of work to do there kiddo.” She was referring to Keith’s pathetically low white blood cell count. I suppose to be accurate I should say his pathetically undetectable white blood cell count. The deal is that he is cell-bound until he can muster at least enough white blood cells to pick a fight with a bacterium. And that could be days from now. Ugh….

Apart from the usual restless night, he enjoyed a pretty good day again. His fever departed and his brother Scott arrived with his mom in tow. The fun and gaming soon commenced and the two of them were perfectly happy sitting side by side for the next seven hours together.

I was back at the office when a contingent of ten uniformed firefighters from the Oakland Fire Department crowded into Keith’s room to say hello and pose for a picture with him. I am told this kind of thing happens quite often at 5 South – athletes, local celebs etc. visiting the kids in the oncology unit – but this is the first time Keith has enjoyed such a visit. I think he had a good time and by the end of the visit as I understand it, most of the fire fighters were up to speed with World of Warcraft thanks to Keith’s tutelage. It wouldn’t surprise me if he talked some of them into buying a copy of W.O.W. and joining him in his various heroic quests.

It sure would be one way to fill some of that empty time back at the station…..

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