Tuesday, April 1, 2008

Do you hear that?

The carboplatin that Henry has gotten is a chemotherapy medicine that works particularly well for medulloblastoma. It can cause hearing damage in some people, and it is the presumed cause for Henry's current mild hearing loss, which doesn't affect normal spoken conversation. Because of it's effectiveness, our doctors advised using it even though we know that he will lose hearing enough to affect him in his daily life. How much it will affect his hearing is unknown, and it can continue to worsen up to a year after exposure, so this will likely be a moving target.

We asked how soon we would notice a change, and learned that it is close to immediate. The first sign of loss is ringing in the ears, and as that fades, the hearing loss replaces it.

On Sunday evening I was lying in bed with Henry and he put his hand over his ear, then took it away, then replaced it.

"I can hear my hand."

"Really? What does it sound like?"

So he put his hand over my ear, so that I could hear.

"Do you hear that?"

"No, honey, I don't hear it. What does it sound like to you?"

He sat up deliberately, grabbed my head between his hands, and placed his ear directly over mine. "Now do you hear it?"

"Yes, honey, I hear it." He was satisfied.

Since then, he hasn't mentioned it again. Bryan and I have been testing him here and there, whispering to see if he's missing things. So far, so good.

We've been told we can have him tested while he's still here in the hospital. He'll likely need a hearing aid. The last time we saw the audiologist, she suggested that we not rush into one, but instead talk louder and diminish white noise until he's used to it. This made me feel better - I was feeling like we had to get things done right away. I think it makes more sense to let us all adjust first.

One more day of chemotherapy remains. His second stem-cell transplant is scheduled for Thursday. After that, we wait for the healthy cells to return. We've been told that the symptoms of immune suppression are likely to be worse this time around, so there's clearly anxiety around that. We'll just take it one day at a time.


t said...

After all this time, I still don't have the right words to tell you all how I feel. Just know that little H and your family have always been in my waking thoughts and prayers. All I can think of it that its almost over. That has to be a good thing. I can't wait to know he's home for the Spring and watering his flowers. Hang in there you 3.


Granya said...

I agree with "t". It is almost over, seems like an eternity, or a minute in time, or the way it has always been.

I remember October 13 so vividly and as plans were made, 6 months of chemo/treatment seemed like FOREVER. And now one day of chemo remains.

Tara and Bryan, Henry and Grandma Linda are the champs of organization, tolerance, cooperation, sacrifice and amazing courage.

HATS OFF TO YOU ALL! We love you and sing your praises and offer our admiration every day. No one could have done this better.

Henry's Challenge is certainly not over but we are all feeling the positive hope of Spring and healing.

Anonymous said...

I am sure "one day at a time" is easier said than done. Especially when each day can throw you a different curve ball.
As I was having "happy hour" this evening, my thoughts were centered on Henry and his family during these next weeks at JH. Wishing all of you peace during this last round of chemo and stem cell transplant.
My ex sis in law, Victoria, is pediatric audiologist in Philly. If you have some questions you want to run by her, let me know.


Kathy said...

My son was diagnosed with supratentorial PNET in 2003, and did the SJMB03 trial at St. Jude, which uses cisplatin instead of carboplatin.

Carboplatin is more sparing of the ears than cisplatin.

My son started out the treatment with a profound right-sided hearing loss, for all practical purposes he has never heard from that ear.

Almost all kids that lose hearing do so after the third cycle, it's almost like clockwork. I haven't read enough of your blog to know exactly how many cycles Henry has done, but if you're nearing the end it sounds like about the right timing.

Most kids don't lose significant hearing after that first drop. My son lost high-frequency hearing in both ears and he is managing without hearing aids. The only time we particularly notice the loss is in noisy environments with lots of people talking, or in the car with lots of wind noise and the like.

So don't despair. Going through this process is a period of mourning for the parents, we mourn the loss of what we consider an ideal childhood (luckily our kids don't have this concept), we mourn the loss of their hair, we mourn the loss of hearing. I felt like my son started out with all these hits against him before the brain tumor and to lose even more just wasn't fair.

But this September we will celebrate 5 years from diagnosis. If his August MRI's are still clear, we will "graduate" to annual visits.

I still worry, and I still mourn what was lost, but I also celebrate every day we spend with him.

I realize the road ahead is still murky, that is until you breathe your first breath of relief after Henry's blood counts recover this cycle.

But hopefully you're beginning to see the light at the end of the tunnel.

I wish Henry and your family well, and I'll check back periodically to see how he's doing.

Anonymous said...

Wow! one more day of chemo!
What a trooper your little guy is!
but then you know that!

we love you all!

Cousin Susan H.