Sunday, August 26, 2012

Coming Home

Bea and I are coming home today. The doctors have looked her over and say she's ready to go back to Georgia!
Bea is in some pain from the 2 surgeries but is in good spirits. She's super happy about going home and can't wait to play with Lewis and see her dad.

Me, too. I'm pretty exhausted but very glad we made the decision for her to get the surgeries. Her eyes are more focused. Her energy seems fresher. Her balance is slightly improved. So, it was worth the worry and sleepless nights.

Thursday, August 23, 2012

Still in Pittsburg

Just a short note... Bea and I will be at Pittsburg Children's Hospital until Sunday. She still has hydrocephalus, although not as badly as before. But it will continue to get worse again. So, we've opted for her to have the surgery here. She will get a shunt as well as a medical port. This will not interfere with the trial.

I spoke at length with the trial doctor and was told that Bea's MRI yesterday looked good and that it's clear to her that the vaccine is working. Bea will receive another shot tomorrow. So, she will be continuing with the trial!

This is a much better outcome than I expected.

Wednesday, August 22, 2012

Off to Pittsburgh Today

Bea and I are off to Pittsburgh, hopeful that the MRI will look good and that Bea will be able to continue with the cancer vaccine trial. I'm trying to be optimistic but it's hard. We've had so many bumps in the road this summer. And, now, Bea has a terrible head cold that's making her tired.

She came home from school with this cold on Friday. The the steroids have a side effect we weren't told about. Steroids are anti-inflamatory and reduce swelling. So, for that they're great. But, we did not know that they also suppress one's immune system and reduce body temperature. We sent Bea off to school last week not knowing that she would be more susceptible to germs. Had I known this I would have has her tutored for the first 2 weeks of school, until after this trip today. Hindsight is 20/20, of course.

I get really frustrated some days that doctors don't tell you what commonly happens when one is on a medication or about the side effects of a procedure. And then they blame the parents for not asking the right questions. It's very beaurocratic. Dot your i's and cross your t's but make sure you don't say more than you have to. C.Y.A.....

Apparently, getting colds is common with steroids. I found this out when I took Bea to her pediatrician yesterday to get her cold checked out. He told me without thinking twice about it. Bea's oncologist didn't say a word about what it would do outside of fixing the hydrosephalus.

So, it's not Bea wouldn't have taken the steroids. It was that or surgery. So, duh that's a no brainer. But, seriously, a little help, please?

Thursday, August 16, 2012

Another World

I go through phases where I'm feeling introspective and want to share and other times where I want to just keep every thought close to my heart and not expose myself to outside scrutiny.

Today's one of those days where I want to share. I've had a lot of friends and strangers comment that they don't have any idea what it's like to live my life. Well, it's another world. My world is almost cinematic in its definition and the characters I've come to know and observe.

I live in a world where I sit in a doctor's office and overhear a beautiful teenage girl with remnants of hair casually talk about her Make a Wish trip with her mother. It's a world where I sat in a hospital room with Bea and several other children talking about their accomplishments of the week and what they want to do the next week. These accomplishments included things that we take for granted - standing up, eating a meal, talking. It's a place where a blind child is verbally directed by her mother to a box of toys. It's a world where my daughter fits right in. And, funny enough, she'd fit right in even if she didn't have cancer.

It would all seem to sad if it weren't. See, I so rarely see any of these children crying or upset. They're living, laughing and enjoying life. THey're just kids and that's why Bea would fit in with them cancer or not. She's not moved by these other children's illness or physical limitations. They're just another kid to play with or talk to.

They're just kids but they are so much more than that. They are the lesson we all need to live... that life is pretty great even when the worst possible things happen.

Monday, August 13, 2012

New School Year!

Bea started First Grade Today!




A great end to a beautiful day... Bea's smiling face after her first day of First Grade.

Oh, and not too shabby either... Lewis started PreK!

Saturday, August 11, 2012

So, How's Bea Doing Now?

It's been awhile since my last posting and a lot has been accomplished in between. Bea is doing very well today. Actually, I'd say she's about as good as she was in June before she got an ear infection and all kinds of other kids stuff and then the hydrosephalus from a few weeks back.

She is on a steroid and the dosage is going down bit by bit. She will be off them this Friday. So far there have been no symptom recurrences while the she's being weaned off the steroid. That's good news. And, she's regained her balance, her focus, her intensity and regained a really healthy appetite (partly in thanks to the steroid). Actually, she's been perpetually hungry because of that drug. But, her hunger is becoming more and more normal now, too.

Her first day of 1st grade is in 2 days, on Monday, August 13. She's going to take the bus, per usual. She's going to have a new teacher in a regular classroom. I am completely comfortable with her going back full time. With how she's been the last few weeks I have no doubt she can handle it just fine. Actually, it's not even a matter of handling it. She really, really wants to go back and learn and play with her friends.

So, after a stressful month things are looking up. Wahoo!
I told you all I'd "wahoo" again.