Monday, October 16, 2006

October 16th - 19th: Chemo Cycle #4

MONDAY, OCTOBER 16, 2006 10:41 PM, PDT

Parent’s Note:

Keith was his usual brave self and sailed through his bone marrow aspiration just as he did three weeks ago. The procedure was over shortly after noon and this time he was already awake by the time we met up with him in the recovery room. He was chomping at the bit to leave the day surgery center to get settled into his hospital room across the street. Perhaps part of his motivation was to get on with his chemo treatment, but I think he really was hoping to snag one of those rolling GameCube consoles that float around the 5th floor patient rooms. Of course he was pretty hungry as well, having not eaten since the previous night, so he sent me off to find sushi and he tore into it when I returned.

As it turns out this is a popular week to get treatment if you are a pediatric oncology patient at Children’s. All the rooms in the usual unit were full and so Keith was set up in a shared room down the hall in a general patient unit. It was panic at first as he was rolled into the room and realized he would be bunking next to a noisy toddler - and not only would he not be in charge of the TV controller, but most likely he would be watching Spanish language programming for the duration of his stay. Much to his relief his roommate moved out soon after he moved in and he was able to stake a claim to the window bed vacated by the previous tenant. He may still be assigned another roommate but at least he has seniority: the window seat and the TV controller are his for now.

Keith’s uncle Chris was in town briefly on his way from Seattle to LA, so he along with Annie and Don arrived with a chocolate cake in tow and we all celebrated Annie’s birthday at the foot of the bed. Keith seems to be in good spirits and feels ok for now. The chemo will most likely start during the night and will last for three days followed by at least a day of monitoring. It is the same combination of drugs that he received during his first two courses and he seemed to tolerate the second course quite well, not succumbing to any significant nausea. We’re hoping for a repeat performance.

As I left Josie and Keith tonight, the nurse came into the room with some news that caused Keith’s eyes to light up. After many requests to locate one, a GameCube console had been found and Keith was next on the wait list for it. I guess this means that Josie will be playing Sonic Hedgehog into the wee hours with one happy kid.

TUESDAY, OCTOBER 17, 2006 10:48 PM, PDT

Parent’s Note:

Day one of round 4 almost under our belt and Keith has been comfortable all day. Chuck, Keith’s current shift nurse, is quite a character and when he’s not taking care of sick kids he races motorcycles for ‘fun’– you know, the road-racing kind where the rider literally lays the bike over about 60 degrees in the turns and drags his (or her) knee on the pavement while careening around corners at 90 mph. 150 or so in the straightaway… Anyway he carries action photos of himself on his PDA (and some 8x10 glossies in his backpack) and proudly shows anyone who wants to take a look which is mostly everyone. It’s a great ice-breaker with the kids and Keith really likes him. I’ll admit I was suspicious at first, after all each of his photos show the rider in full racing gear wearing a helmet so it could be anyone, right? Plus Chuck still has all of his front teeth – what’s the chance of that in this sport? But ultimately I’ve come around to believe him just because I like him. And if it turns out that it’s all a ruse, hey, it makes for great conversation.

Keith had another roommate for much of the day, but again he has the room to himself for the time being. Still it will certainly be another very long sleepless night. Josie endured this same situation last night and now it’s my turn to wake Keith up every hour after midnight all the way through 8am to empty his bladder and protect it from the toxicity of the chemotherapy drugs.

Today’s impressive list of drugs that Keith has ingested include Doxorubicin, Vincristine, Cyclophosphamide, Mesna, Zofran, Ativan, Decadron, Kphos, Zantac, Reglan, and Benadryl. There’s probably more that I’m not aware of. I now consider Keith’s body officially VPD (veritable pharmacological cornucopia).

Now for the inevitable insurance headaches: it had to happen sooner or later and so we seem to be facing our first significant insurance roadblock. Apparently the bone marrow transplant procedure that is a critical part of Keith’s protocol has been denied by our carrier and cannot be performed at Children’s Hospital Oakland. It looks like Stanford or UCSF are the contracted providers in the ‘vicinity’. The stem cell harvest is fairly simple and should take less than a week of daily outpatient visits. The transplant or ‘rescue’ procedure that follows is much more involved and will likely require many weeks of inpatient care. So we’re just trying to get our heads around what this little decision will actually mean to us. For starters it means that instead of 7 miles each way to Children’s we will be facing some very long commutes (60 + miles to Stanford each way) or be facing very different family dynamics where we physically relocate somehow for a period of time. There’s also a new physician team inserted into the middle of his protocol that of course raises the continuity of care issue. I suppose that probably won’t be a huge issue (assuming both groups get along) given the reputation of both institutions programs but still….

Anyway, it’s a big unknown right now and another cause for anxiety on top of everything else.

No one said this cancer thing was going to be easy…


Parent’s Note

Between the long night last night and distractions related to insurance issues there’s not much energy left to write, so I’m afraid this will be brief. Keith has made it through the 2nd day of chemo and still has no major discomfort. He’s didn’t eat a whole lot today but that’s not surprising and the meds have kept him just a bit off kilter from his usual buoyant Keith self.

Josie’s spending the night with Keith and a 17 yr. old roomie so it should be interesting. Looks like the doctors are shooting for a Friday am discharge.

While we haven’t seen any official report, there was a rumor spreading that both of Keith’s bone marrow biopsies looked clean this time and additional samples have been sent to southern California for microscopic analysis. The previous bone marrow samples taken three weeks ago were quickly deemed contaminated and were not sent for further testing, so we are taking this as qualified good news.

Will try to compose a more coherent update tomorrow.

THURSDAY, OCTOBER 19, 2006 09:42 PM, PDT

“I’d rather have a bone marrow aspiration than drink that nystatin” Keith letting it be known how he feels about that yucky yellow liquid in the little plastic cup.

Parent’s Note:

As this is being written, the last few drops of Doxorubicin / Vincristine are coursing down the IV line and into a sound-sleeping Keith. So he is basically finished with cycle 4 and for the rest of the night he will continue to receive fluids and antiemetics until he gets the thumbs-up to head home sometime before noon on Friday (hopefully).

He’s been a real sport throughout this stay so far and has generally been in high spirits and well ‘entertained’. He loves the visits by Annie and Grandpa Don and Scott. He has a laptop with one of the Age of Mythology games that has kept him occupied for a good chunk of time. He also takes particular enjoyment in creaming anyone who is foolish enough to ‘battle’ him on the GameCube console that somehow has remained in his room for the duration of his stay so far. I think he particularly enjoys watching me struggle with my hapless character, pressing B to grind down a railing on a skateboard when I obviously should have pressed A-A-B-A (or was it B-A-B-A?). He has won so many duels with me that his memory card must be nearing its capacity to store a number with that many digits. Whenever I lose, I look out of the corner of my eye, trying not to reveal my true frustration, and I always see that satisfied looking grin on his face. So I’ll keep trying and failing and he’ll keep winning and smiling and I’ll call that a win-win any day.

The only time I’ve seen him upset during this stay was when I let the resident doctor talk him into taking the dreaded nystatin. Now, don't get me wrong, he really should take the nystatin – its prescribed to help prevent fungal infections in the mouth that can cause sores that are pretty common with chemo. But somehow the taste really bothers him and he get’s so completely worked up about it that he literally gets sick to his stomach. It's really hard to watch. Apparently Keith is not the only kid here that feels the same way about nystatin and it strikes me that there would be a whole lot more healthy mouths around here and a whole lot fewer doses of nystatin that mysteriously “go missing” if someone would just make the darn stuff taste better to kids. Maybe the nice folks at Ben & Jerry's could get involved....

At some point I will spend some time describing our little insurance issue, but there’s not enough time or space to do it justice now. Suffice to say dealing with insurance issues is frustrating, confusing, demoralizing, counterproductive, deceptive and a whole bunch of other descriptors that probably are best not to put into writing in this journal. We will eventually work out a solution with our insurer and make sure Keith continues to receive all of the treatment necessary for his survival. It’s just taking a lot of energy right now and we certainly don’t need any more unknowns when we are already dealing with so many.

(Deep breath)

Let's see...did I mention that Keith is coming home tomorrow? Yea!

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