Wednesday, December 04, 2013
Danny has lost 45 decibels of hearing in the higher frequencies in his left ear. This is a huge amount. Yesterday was a tough day - he was scheduled to start his regular chemo with the drug that caused the hearing loss. And it was a huge loss, as I say.
Well, the oncologist (Dr. H for short) came to talk to me with a grave face...kind of hard for him, since he is generally a very cheerful guy. And...he told me that the protocol is to reduce the chemo drug by half if the hearing loss is 30 decibels or more. Well, 45 is quite a bit more than 30, to say the least.
Obviously, I don't want my son to lose his hearing. That would be a terrible thing. But what would be a worse thing would be if he were to die. So I said to Dr. H that I would rather he were deaf than dead. Kind of obvious, that one.
He called up Danny's primary doctor, who is on maternity leave, and a third pediatric oncologist, and they had a conference call to discuss Danny. The result was that all three agreed that he needed to have the drug dose cut in half. I told him that I would defer to their judgment (which I would probably have done in any case), but that I wanted to let him know that I was concerned.
Then he told me that he had checked on the research study that had come up with the protocol for treatment that Danny is getting, and said that the survival results were exactly the same for those who had followed the protocol exactly as they were for those who had deviated from it. While I found that reassuring, then I have to wonder - if it doesn't matter if they cut the dose in half, why on earth don't they just do that for all the kids in the first place? I may even ask him just that when I see him next week.
So, Danny had his chemo. Even with the reduced dose, I could see that it took a lot out of him. He was exhausted and lethargic, much as he was before his original tumor was diagnosed. In addition, his stamina is pretty well gone. So today, while he was getting his post-chemo IV hydration, I asked Dr. G (different pediatric oncologist) about it. He said not to worry, that the effect of chemo is cumulative, and, even when Danny's blood counts are acceptable (meaning not bad enough for a transfusion), he is anemic - which accounts for the stamina. Dr. G assured me that I will get my active, laughing son back when all this is over. Sigh...
Tuesday, December 03, 2013
Well, Danny had his regular hearing test. He gets tested to determine if one of the chemotherapy drugs he has been getting has damaged his hearing. He has been treated with this particular drug three times so far. No damage had been seen in any of his previous tests, but this time he is showing significant loss of hearing at the higher frequencies in his left ear, and some loss, though still in the normal range, in his right ear.
This is not unexpected. Cisplatin, the drug in question, is well known to cause hearing damage. However, it is very upsetting. I am grateful that he hasn't lost hearing in the frequencies of normal speech, but it's small comfort right now. In addition, he has also lost his reflexes - when his knee is whacked with a hammer, it doesn't jerk. This was caused by a different chemo drug. The oncologist assured me that reflexes aren't essential for anything they don't affect walking or balance, and no one will ever know. They are just something the doctors can follow. But, in spite of his reassurances, I am distressed about it. I guess it's just part of the price of saving his life.
Tuesday, December 03, 2013
I am actually kind of impressed with myself today. I put leftover pumpkin butter bars, pumpkin cake, and mini pumpkin whoopie pies in the freezer for us to enjoy later, when my oldest two come home for Christmas. I had already given away the 3/4 pumpkin pie to my older son to take to college. The buttermilk pie I have been eating, one slice every day or two. The 3/4 pecan pie is sitting on my counter. I want to throw it in the trash - it is not homemade, and it is just full of partially hydrogenated fats. Yuck! The only reason I haven't tossed it already is that it was given to Danny by the friends we ate Thanksgiving dinner with. But he isn't eating it, and I may just get away with throwing it out. But good grief, we certainly didn't need that many desserts!
I am not doing so well with the homemade rolls. They are still unfrozen, but I may put them in the freezer tomorrow. And I have been eating carrots, organic local apples, and local root veggies. Overall I am pleased.
Sunday, December 01, 2013
I was going to put in the picture of his costume from 2011, but it must be in a different computer, because I can't find it. He has a real sympathy for the underdog. This year he was a British redcoat; in 2011 he was a Confederate soldier.
Sunday, November 24, 2013
Unfortunately, the way I have been overeating because of stress/sadness lately, this hits the nail pretty much on the head!
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