Wednesday, February 10, 2010

Chemo 16, Day 3: Left Turn

Renal finally came down this afternoon. I wasn't particularly impressed, even though the attending doctor did show up at 10 after 5. (Usually, the attendings are out the door at 5 o'clock, unless there is an emergency and they are on call.) She woke me from a very sound sleep; although The Boy slept until 10:00 this morning, he also didn't fall asleep until after woot o'clock in the morning. This, along with nap resistance and an active boy, left Musical Daddy as a tired daddy, indeed.

Anyway, she woke me up when she knocked on the door, and we proceeded to have a conversation about The Boy. In a nutshell, she hadn't read his case history, just the recent charts. His creatinine levels were back to 0.5 today, which is The Boy's normal levels. This is lower than the 0.7 he had on Monday. Apparently, the GFR is calculated using some form of the creatinine levels, and if the GFR was recalculated using the current creatinine levels, the GFR reveals itself to be close enough to the 58 level he had last month. The GFR test is not an accurate test; gut instinct and an understanding of statistics and statistical analysis tells me that the GFR is best used to judge trends in performance rather than latching onto the number as an absolute.

Side note: Lenny Kravitz is cool. I mean, too cool for words. I picked up a Best Of on Amazon's mp3 store last month, and I'm just getting around to listening to it. Great album, great artist. Very James Brown-like in its study of groove and the rhythmic pocket with only a minor emphasis on lyric and melody. Good stuff.

Continuing, I learned that the creatinine levels can be affected by dehydration or fasting, such as a 2.5 year old that had only VERY recently had breakfast and hadn't drank anything of substance that day because his daddy pulled him out of bed at 5:30AM to take a trip to the hospital. So, her opinion, based on that data, is that the creatinine level spiked due to those other factors, causing the GFR to nosedive, but a 0.5 creatinine level on tomorrow's blood work should confirm steady kidney function.

Side note 2: this kind of confirms our previous nephrologist's reliance on creatinine levels as a more accurate assessment of kidney function than our oncologist's reliance on the GFR. Not that he uses it as anything other than an indicator, but in his experience with Wilms Tumors, a sudden, precipitous drop in GFR is a bad thing. It looks like medicine, and cancer, are tremendously tricky things, but we knew that.

Continuing, if you're still following me, the nephrologist and I discussed The Boy's treatments. Bottom line, she hadn't studied his case history, so little of what she said was worth repeating until she and I have a followup conversation tomorrow after she does her homework. She doesn't believe that a transplant is imminent, and the renal team, upon further consideration of the creatinine level change, sees no reason that treatment should be discontinued. We also learned that the transplant will not take place until The Boy is a minimum of one year off treatment and NED (No Evidence of Disease). This means that, if we have to stop treatment because of renal issues, we're looking at a year or so of dialysis. Also, this means that we're not going to need to test everyone.

Side note 3: I find it interesting that, when we're at home, I can't get out of bed without The Boy waking up and following me around. At the hospital, it usually isn't a problem, as evidenced by the fact that I'm typing this from a chair. Weird.

Adding this information to the gestalt, we're not out of the woods yet. The onc team has to consider a multitude of factors: nephrology is an important factor, but they aren't the only factor. We, and they, are still concerned with The Boy's lack of ability to regenerate platelets and red cells in between chemo treatments, even at reduced doses of chemo. Getting the feel from the various conversations, The Boy's inability to heal combined with a sudden drop in kidney function would likely have resulted in a near-immediate cessation of chemotherapy, possibly as soon as Friday night's chemo dose. With this new information, we will, in all probability, be continuing chemo through the end of this cycle, which lasts until chemo 18. At that point, he'll be reevaluated and scanned (I'd assume), and we might continue on with another cycle or two. I can't imagine any more than that. Mind you, this is ALL conjecture, because I don't know if our oncology team has come to any conclusions based on the new information from nephrology, and I don't know what will happen when the nephrologist with whom we spoke actually reads The Boy's file and consults with the attending that usually deals with The Boy.

Whew. Lots of big words in this blog entry, and some pretty darn deep medical concepts. If your mind is a little confused about the details, don't fret; mine is, and I've actually been talking to everybody.

How do I feel about this? Darn good question. On one hand, stopping chemo would be nice. it would likely result is LESS hearing damage than we're expecting, and The Boy might actually be able to start having something approximating a normal life. Lack of chemo might mean less time in the hospital for a little while, and that's always good. Besides, I'd like to see what his hair, non-minoxidil version, looks like. His kidney should start to heal and to take a more normalized function, and we should be able to significantly reduce the amount of medication that he's taking. And, no chemo = no neupogen, which is a GREAT thing.

On the other hand, they have 30 chemo sessions for a reason. I'm fairly certain (though I haven't read the original study) that they didn't pick that number out of a hat. I'm concerned that missing out on 12 to 14 chemo sessions is NOT going to be good for his long-term prognoses of staying NED. He's relapsed once already, which is why he's on this protocol, and dodging the bullet in January shouldn't push us into being complacent with early, non-earned thoughts of remission.

Gripping hand, we have to trust our oncology team, that they are going to do as much chemo as they can do without exposing him to so many side effects and other issues. We have to trust that they are on top of the situation, knowledgeable about all foreseeable factors, and able to work with us to make decisions that will give The Boy the best chance to beat this and live a nice, long, cancer-free existence.

Side note 4: This hospital trip, I'm listening to a lot of music form my "unheard music" playlist, which had grown to about 120 songs before this week. I find it entertaining that there was still about 6-10 holiday songs that I hadn't listened it; "O Holy Night" is shocking when it comes on your iPod in February, even when you're expecting it.


the mol said...

The buzz about this protocol, though, is that is was written to be too long. Hopefully it will be long enough for The Boy with 16-18 cycles.

Sarah R said...

That's a lot to ponder. I hope that whatever happens is for the best. I want to see The Boy healthy again, however he has to get there!