Monday, February 6, 2012

Yes, he's cancer free but this still sucks.

I guess I was getting too comfortable. I guess I had really settled into normal because 2 weeks ago my world got rocked (again)  and I'm still trying to get my head around it.
 For those of you who aren't on Facebook or don't follow me on Twitter, I will bring you up to speed.  Forester has lost almost all of his hearing in his left ear. 
About 3 weeks ago Forester had some congestion, sneezing and runny nose. After a bout of sneezes and nose blowing he said he couldn't hear out of his left ear. We chalked it up to sinus congestion/pressure. After 2 days of him saying he still couldn't hear we took him to the pediatrician. I thought for sure either Forester was being dramatic or he had the beginning of an ear infection. His ears were clear but the doc gave him some Fluticasone to help clear the pressure, etc. After 7 days and no change we weren't terribly concerned until I saw Micah say something in Forester's left ear and then Forester turn his head around and asked him to say it again in his right ear.  Wait. That's not being dramatic.  We scheduled an audiologist appointment at MUSC for the following week. Oddly enough Forester's school requested a hearing & eye test with the nurse the next day. They called me in to share the results. He had failed the hearing test completely in his left ear. Heard nothing.  We called the audiologist at MUSC and they moved his appointment to the following morning. Slade and Forester and I went. I thought for sure he probably had something going on in his middle ear - something fixable. His hearing tests (which he gets every 6 months) usually take 10 minutes at the most.  When he didn't come back to the waiting room after 20 minutes I got nervous. When he still wasn't back after 40 minutes I was really, really nervous.  You may remember that Forester took a chemo drug called Cisplatin that can cause hearing loss. He did lose some hearing in the "dog whistle" high tones but it was minimal. He's had consistent hearing tests with no change for almost 2 years now. So...this just didn't make sense. It has to be an ear infection.
Long story longer, Forester completed his tests and the audiologist pulled me into a tiny little room to talk.  She said "well, it's not good news". (all too familiar people!) He has had dramatic hearing loss and it is permanent. She said a hearing aid wouldn't help him as the loss is too severe and bunch of other stuff  that I can't remember because Slade was screaming "MOMMMEEEE!" from the waiting room the whole time.  But, somehow I came away thinking this was related to Cisplatin.  We were immediately set up to see an ENT specialist within a couple of hours.  She said something about a possible treatment (huh? I thought you said permanent?), steriods, tests, shots... blah. I hated this day. It reminded me too much of Forester's diagnosis day. Pete wasn't with me...I called him crying...being whisked away to other doctors and tests...all of it. Yucky.
Moving on.
My parents met me at my house to watch Slade and Pete met Forester and me across town at the ENT. This doctor is much more positive. And he's tall. Very tall. He says this is not from Cisplatin. Cisplatin not only doesn't cause hearing loss in this way but definitely not two years later. The theory (also known as we don't know why this happens) is that a virus of some kind infected Forester's Cochlea or Cochlea nerve.  This is extremely rare but it happens and the end result is instant dramatic hearing loss that is likely permanent.  Really? I mean, really?? This craziness isn't related to cancer & treatment? What???
We were told that high doses of an anti-viral drug along with high doses of steroid could give Forester a 50/50 chance of regaining some or all of the hearing loss. We've already dealt with rare. We've already dealt with a 50/50 chance. This sucks but at least you're saying there's a chance.  So, for the last 10 days Forester has been jacked up on huge amounts of these drugs. This morning he had a hearing retest to see if the drugs had reversed the hearing loss. Unfortunately, the result was minimal improvement. A little bit, but not much. The next and last step to try to regain his hearing began today.  The ENT poked a small hole in his eardrum (yeah, ouch.) and then applied liquid steroid directly to the Cochlea. Forester was very brave. Once again, this kid was a trooper during a procedure that most kids would have freaked over. I was very proud of him and very sad for him all at the same time.  He will have to do this again on Wednesday and again on Friday.  He will have another hearing test a week from today (Monday), and those results will be final and permanent.
I've gone through a lot of emotions this past week and today. Mostly sad. I've cried a lot today. Maybe I can blog more about how I feel at a later time but right now I'm just tired and weary and really sad. Sad to be here again...kind of.  No, it's not cancer. Yes, he's still cancer free!  But, right now he's lost the ability to hear out of one ear and that still sucks. This one thing alone would be devastating to any parent. Every parent wants their child to have  everything they're supposed to have. But on top of everything else?! Ugh. This mother's heart is hurting. Bad. I know he'll be okay even if he doesn't regain his hearing. I know he can still hear well out of his right ear and he doesn't seem extremely bothered by the loss. But, he's my baby. I don't want him to struggle anymore than he already has.

Please pray that miraculous things will happen this week and that Forester's hearing will be restored.  Thanks, warriors.