Thursday, October 8, 2009

And the Hits Just Keep On Comin'...

I knew there was an issue with The Boy's hearing back in June, and I bugged them to schedule a hearing test. The doctors agreed, but because of the other issues (the staph infections, the port replacement, Younger Bro's birth and subsequent re-hospitalization and tongue-tie), the hearing test got pushed back. Not the biggest deal, no real reason to push it. But, as per usual, I was right, and it is not good news that I was.

Anyway, the hearing test happened today, and it was as I feared. The Boy now has the hearing of your average 40-year old man, and because of the carboplatin (and the fact that the platin family of drugs is a major component of Wilms Tumor treatments), it's gonna get a heck of a lot worse during the course of The Boy's treatment. The treatment is, of course, scheduled to end approximately November of 2010 but will likely last into March or April of 2011. Complicating matters: they won't fit him for hearing aids until he's out of treatment for 18 months.

This means that the prime years for language development and socialization skills (3 and 4) will have a child without a substantial portion of his hearing. Yet another thing to add to the list of "Thank you, cancer."

I know that it's better to have a living child that needs a new kidney and significant hearing correction, rather than a dead child. I understand that. It's just... well... when does the worm turn for us? When do things start to get better? When do we catch a break?

Deafness is a nightmare to me. I honestly cannot imagine going through life with severely reduced hearing; yes, I have significant tinitis due to years in front of bands and an illness in college, but my hearing is still quite good. Deafness, though? I can't imagine. How do I explain to my son why I sing barbershop music? How do I explain the allure and beauty of classical music, or of the subtleties of great jazz? How do I expect him to understand the brilliance and entertainment behind the dialogue in a Joss Whedon show or a Kevin Smith movie - that the enjoyment isn't necessarily in the content, but in the pacing and timing and delivery and accents?

So much for my dream of a family barbershop quartet.

Man, this sucks. Big time. I'm praying that the hearing damage is somehow halted or slowed, so that The Boy will be able to enjoy the things that I enjoy. We'll see. Don't get me wrong; I'm not angling to stop chemo, although I wouldn't mind if we were able to stop at 24 chemo sessions instead of going the whole 30. (Next time is #13, of course.) It's just... his height, his weight, his gross motor skills, his fine motor skills, his strength, his hearing, his remaining kidney, his bone marrow / risk of leukemia... I want there to be more left than a technically-still-breathing husk of a human being. It doesn't do an awful lot of good to save his life if he's permanently crippled.


Elana Kahn said...

*sigh* That just sucks. I am also a huge music lover and I was terrified that the twins might have hearing difficulties because they were born early. A friend of mine from high school is a twin and she and her brother both have hearing problems. The twins didn't respond to any noises in utero, so I thought for sure something was wrong. Thank goodness I was the only thing that was wrong. :-) My heart just breaks for you and The Boy, and I hope there is something they can do for his hearing. Why won't they fit him for hearing aids until he's older???

Musical Daddy said...

My understanding is that they won't fit for devices because it takes around 18 months for the chemo drugs to work their way completely out of the system. This allows enough time for damage to be done completely, instead of trying to fix it as it's happening.

Sarah R said...

My heart just breaks for you. You don't deserve yet another fork in the road. I HATE CANCER for what it's done to your family and your innocent Boy.

JC said...

It seems like if he already needs the devices, he should get them. Why would you wait until something is completely destroyed to fix it. Of course, that's just me being a parent. Sorry I probably didn't help here.