Wednesday, October 11, 2006

October 11th - 15th: Things Don't Always Go as Planned


Parent’s Note:

Today everything went according to plan until it didn’t.

That probably doesn’t make any sense so let me start from the beginning. Here’s the quick sequence of the day’s activities more or less… Keith woke up feeling great except for a stuffy / runny nose and ate a good breakfast. Josie drew his lab samples and dropped them off at Quest Diagnostics mid-morning while Keith did his homework from the previous day. Later he asked if we could be so kind as to take him to Lafayette to have lunch at Quiznos. Seemed like a reasonable request and so everyone agreed and piled into the car. Keith ordered up a double BLT and gobbled up the entire thing. Back home around 2 pm his home school tutor worked with him to review math and science. Keith was pretty tired afterwards and coincidently it was about this time when Josie got the call from the clinic.

Keith’s blood counts came back very low in a couple of areas. His ANC had dropped to 200 from almost 3000 on Monday and his hemoglobin was very low. That transfusion we thought might be necessary earlier in the week was now necessary.

I think Keith thought he was out of the woods for the rest of the week so when he heard the news that he would need to be admitted for an overnight at the hospital he was pretty upset. “Why do I have to go to the hospital???…. Why couldn’t they have called earlier so that I didn’t have to stay overnight???” …lots of similar questions. We knew he wouldn’t like the news but we were surprised by how badly he felt about it.

But in typical Keith fashion, after the initial shock and after cooling down a bit, he said “I don’t think it will be that bad. I can read my book and watch Food Network”. We think it’s remarkable that he seems to have a way of coping with these kinds of situations in the end and that is a great relief to us and helps reduce the anxiety for him.

So off we went to check Keith in to Children’s. He will stay the night in an isolation room (because he has a drippy nose) and get his transfusion(s). Hopefully he will have a restful night and wake up all pink and rosy again. He’ll also cool his heels there until his scheduled CT scan later in the morning. After that he should get the thumbs up to go home. That’s the plan and we’re sticking with it.

Although sometimes plans go according to plan until they don’t....

THURSDAY, OCTOBER 12, 2006 09:25 PM, PDT

Parent’s Note:

Keith is now wearing his new batch of red blood cells and it looks pretty darn good on him.

I’m not sure he or Josie got the best night’s sleep last night, as it wasn’t until around 1am that he actually received his transfusion. The standard hourly vitals monitoring that accompanies this kind of thing continued through most of the night as well. He was awakened again at around 6:30 am to force down a bowl of cereal because food was deemed taboo after 7 due to the CT scan that was scheduled for later in the morning. But all in all it was pretty smooth sailing. Once he got past drinking the contrast fluid (again he sweet-talked the nurses into not having to drink most of it) his day brightened considerably. He jumped into the scanner and shortly after noon he was given his walking papers.

Josie brought him home and he ate a nice turkey and stuffing lunch, followed soon afterwards by his regular diet of fun and games. If his blood counts measure up after next Monday’s bone marrow samples are taken he will be readmitted for his fourth round of chemo. This is beginning to feel like déjà vu al over again but with each round his cancer takes a licking and that makes each round almost worth looking forward to.

So for now he is happy, rosy and at home again, beginning to think about what he wants to be for Halloween. And that’s a good thing...

FRIDAY, OCTOBER 13, 2006 09:49 PM, PDT

Parent’s Note:

I asked Keith how his day was on our usual 1 to 10 scale but he didn’t respond, he was having too much fun with his brother. His entire day was full of fun, friends and giggles. So I’ll go out on a limb and give it a 10 for him.

We’re looking forward to a couple more days like this before heading back on Monday to Children’s.

It was great to see Keith back to his usual happy carbon-based-lifeform self again.

SATURDAY, OCTOBER 14, 2006 11:19 PM, PDT

“It was fun to watch my friends make the underwater mural for me. There are some really good drawings of sea creatures.” Keith

Parent’s Note:

The mural that Keith referred to is a fantastic large canvas in hues of blues and greens with orange highlights and a huge octopus in the center. Keith stopped by Wagner Ranch on Tuesday after the blood drive to watch its progress and doodle a jellyfish himself. The final mural was delivered to Keith yesterday and it’s another amazing example of friends coming together to help make Keith feel better. Thanks Laura and all of the many Wagner Ranch artists for making this happen – it’s fantastic! I'll see if I can get some new photos posted soon.

Keith's classmate and friend Nolan stopped by to interview him for an article he plans to write for a school project. It was fun to listen in on the Q&A session - future probing reporter on one hand and seasoned evasive interviewee on the other.

Saturday was a another good day for Keith. With the exception of the schoolwork we forced him to complete, he pretty much was director of activities for the remainder of the day. Let’s start with food….for breakfast he wanted scones and jam – he got it. For lunch he asked for grilled panini – he got it. For dinner he suggested Bo’s barbeque in Lafayette – he got it. For desert it was a Klondike bar – you guessed it – he got it. When it comes to food, we just follow his lead and we are never disappointed. His entertainment choices included video games (surprise), a cat puzzle and Monopoly – all granted. We’re not saying no very much lately.

Of course he also was itching for another Michigan win. So with a house full of Wolverine rooters we ‘tuned into’ the Michigan / Penn State game and marveled once again as he beamed his chemo-telepathic play calls to the field, keeping the 7-0 Wolverines in hot pursuit of the National Championship.

We sure hope the NCAA doesn’t catch on to our little secret or Michigan might face probation…

SUNDAY, OCTOBER 15, 2006 11:31 PM, PDT

“I got the usual, the red ghoul” Keith describing the Halloween costume he picked out today.

Parent’s Note:

Yep, this is about the third year in a row he’s been a red ghoul and somehow we never seem to figure out we could have just used last year’s costume – we now have three red ghoul costumes somewhere in the house. About the only difference in this year’s fashion statement is his choice of accessories – a couple of massive double-edged (plastic) broadswords (I think this was all the craze on the Paris fashion runways this year). Just to be clear, this isn’t the ghoul costume with that passé white plastic drooping facial-feature mask. No, this costume has one of those black mesh net faces so it doesn’t look like he has a face at all – just a mysterious dark-infinity-void-where-a-face-should-be-kinda’-look…. très spooky…..

It’s interesting that Keith seems perfectly comfortable with all of the physical changes his recent chemotherapy has imparted. He acknowledges his thin hair looks brutal (to use his own term), but still cares enough about his looks to comb what’s still there so it looks as good as it possibly can. Only on a couple of occasions he has commented that he wished people wouldn’t stare at him so much when he’s out and about. So he’s taken to wearing his Michigan cap when he does go out in public – not because he thinks it looks better, but because he feels it might help prevent some of those understandable but uncomfortable stares.

An observation about Halloween is that it offers a chance to level the playing field again for him. He should be able to run about with kids he doesn’t even know and feel comfortable that he won’t stand out like some sort of real-life ghoul – even though he may actually be dressed up like one.


Again we face one of those bittersweet moments as we prepare to head back to the hospital for the next round of chemo. Keith has been enjoying life and feeling well lately – almost normal - and it is very hard for us to see it end by taking him back to the place he associates with discomfort and anxiety. And yet in this twisted therapy paradox it is the treatments with all of their associated discomfort and anxiety that will ultimately allow him to return to enjoying life and feeling well again.

So it starts again. Keith will be NPO starting at midnight in preparation for anesthesia and another bone marrow aspiration mid-day Monday. We check into the clinic at 10 am for the usual pre-chemo physical assessment and if his blood labs indicate he is ready, he will be admitted to the hospital after his surgery and start the preparation for course 4.

If we’re lucky, he’ll be feeling good again by the time Halloween arrives and he dons his red ghoul costume and heads out into the night with all of his ghoulish friends, an empty bag in one hand and at least one massive double-edged broadsword in the other…just trying his best to be a regular kid.

No comments: