Carys & Chad update!

Carys had her ear tube surgery on Friday - she did great! She was so excited & kept telling everyone she was getting magic tubes to make her ears feels better.
Not much to say about it because everything went so well...but you know I took pictures of our brave girl!

Here she is practicing with her mask...she was a little scared of it at first, but the nurses just let her hang out with it while we waited, so she was not nervous at all when it came time to get her "sleepy medicine." By the way - she chose a bubblegum scent for her mask. Yuck. The last thing I want to smell when I'm falling asleep is sweet, sticky bubblegum!

Here she is clowning for the nurses. She was dancing, singing, telling jokes...they thought she was a riot! Showing Daddy that her mask is pretty cool....Oh. Afterwards. She was a little groggy for about 30 minutes, and then she was back to her old spitfire self. You can't slow her down for very long! She was in heaven because she got to have Sprite & an icepop after the procdure. I had to explain to her it was a special day & she would have to forget about having popsicles for breakfast.

On our way home, she decided she wanted Bojangle's. It doesn't take much to convince Chad & I to eat there, so we agreed. You would never even know she had anything done about an hour beforehand. She is such a little trooper.
Early Saturday morning though - she scared me to death. She was fine all day Friday. About 5am Saturday, she woke me up with croup. She used to get it all the time, but hasn't had it in a while. She was scared & it made her breathing worse. I bundled her up & we went outside into the cold air to help soothe her windpipe. It took about 15 minutes, and a lot of loud gasping breaths, but we got it under control. Talk about freak a mama out! She seems fine now, so I guess it was another one of those things that happen when you least expect it.

I can't say that I've noticed an immediate change in her hearing. She can hear us whispering to her, which she could not before. However, she is four. And selective hearing is not something any doctor can fix!



Okay, onto Chad.
He starts treatment. Soon.
As in tonight.

This road has been so long & complicated. We've gotten answers to questions, and more questions from answers. We've seeked the advice of multiple experts. Which have all lead us to this: We're starting with chemo first. If needed, we'll add other drugs or radiation. But for now, we're staying positive that chemo is going to keep this disease stable and shrink it.

Why not radiation?
Chad is young. He is healthy. The effects of radiation can be very damaging. We heard from Duke last week, and their recommendation was to monitor the growth of the tumors with MRIs every 3 months. No chemo. No radiation. Their thought is that Chad is currently hving no symptoms, other than the seizures - which are controlled right now. Why go through the rounds of aggressive treatment if you don't necessarily have to?

Neither of us were comfortable with that approach. The tumors are there. They are obviously not just going to vanish by themselves. So what approach can we take? What will give the best odds of shrinking the tumors while keeping him as active & healthy as possible?
Radiation destroys cancer cells, sure. But it also damages healthy tissue. Is it worth the risk right now to perhaps change the tissue in his brain with radiation?
We don't know. No one knows. All doctors can give is their best educated guess. Every patient is different.

So we took all the information we've collected over the last 2.5 months and decided to try chemo, alone, first. He will have MRIs every 3 months to monitor growth or change. Right now, it looks like he'll be on chemo for 6 months. It's not so bad, we hear - it's a pill. Most people tolerate it very well, and he should be able to resume normal everyday life with little to no interruptions.

That's the plan. At least for right now.
Thanks again, for your support. When we have any information, you know I'll share it with you!