Thursday, April 28, 2011


Chemo went well.  It took a while to get started, so she finished the 24 hour infusion at midnight.  No side effects right now.

Tuesday, Scarlett underwent an extensive evoked-response hearing test.  She was sedated, then brain waves were measured as different ranges of sounds were presented.  It took over two hours for the procedure; I got a chance to wander the mall a bit and get some fresh air while I waited.  When I returned, the audiologist had some bad news:  Scarlett has mild to moderate hearing loss in both ears.  Her left ear is slightly worse than the right. There has been some discussion of fitting her for hearing aids.  Not the worst thing we have faced, but yet another challenge for our sweet baby girl to overcome.

Two months ago, we had a preliminary hearing test that showed no deficits; her hearing was unaffected by the tumor and surgery.  We knew that one of the chemo drugs was ototoxic (hearing-damaging), but our doctors felt it was the best option.  We learned that the antibiotic used to treat her shunt infection can also have ototoxic effects.  The infection itself may also be a contributing factor.  There is not really any way to know what caused it, nor how much hearing will be regained as the medications are changed or removed.

We've been in the hospital for 18 days and counting, our second-longest stay.  We have to stay at least until the current chemo clears her system, which usually takes 4-5 days.  Then we run right into her next dose; if she takes an extra day to clear, we will just stay on through.  If she clears earlier, we will go home for a few days before being readmitted. 


Kristyna said...

I'm glad to hear that she is handling it well this round. I'm thankful for all the things you guys are learning each time something happens. It means that each time you repeat the process you've already taken steps to keep her comfy:)

I know that whatever long-term effects these procedures have on her won't take away from what a miraculous life she will lead. You guys may want to discuss teaching her sign-language! Even if her hearing ends up being perfect, it's a very useful and special skill to have.

Thinking of you always,

Amanda said...

My son has a mild to moderate hearing loss. When things begin to calm down for you you might want to pick up this book. I found it to be very helpful. Hang in there! Lots of prayers...

"Your Child's Hearing Loss: What Parents Need to Know"
Debby Waldman; Paperback;

Truth Mommy said...

Scarlett is an amazing trooper!

Sign language is an amazing language that is easy to learn and can lead to a happy and normal and productive life... just like Scarlett is meant to live!

California State University, Northridge is actually the second best school in the NATION for Deaf Studies... Scarlett has no worries!

So glad she is doing well!

Love from Los Angeles!

heatherdily said...

I'm praying that those little ears are able to heal, one less hurdle for you all. Every time she goes through chemo I feel like I'm holding my breath waiting to hear that it's cleared out of her again. She is the strongest little girl out there and I'm so proud of her and you both for every day you get through.

*Big hugs, prayers and well wishes from Alaska*
~Heather and Lindsey BBC July 2010 <3

Haley Norman said...

Praying for you and sending love to you all.
The Norman Family in Oklahoma <3

bobwendi said...

Glad this chemo round is going well. :)

It's nice that you got to walk around the mall a bit and re-energize. Makes a big difference in your overall being.

We'll pray that Scarlett's hearing isn't as affected as they currently believe it to be.

Sending hugs and much love...
Hoping Scarlett goes home very soon!