Thursday, September 29, 2011

The Clear Scans

The scans were clear! So that's obviously good. We're free of those until the start of the new year. And since they looked good, Julia got to have her Mic-key button taken out. For those of you not paying full attention (you're forgiven), that was the little device that gave us access to her stomach. It was put in as a G-tube late winter for us to give her feedings and later trimmed down to the button but kept so we could give her any meds she needed.

She said she didn't want it removed. I think it was part not wanting to have to take any meds orally and part because it sounded scary taking it out. To remove it, a nurse just deflated the balloon holding the button in place on the inside, slid it out, and covered the hole with gauze and tape. It was really weird just having an open hole in her abdomen with just a piece of tape over it. At home we had to change the gauze a few times a day and now, two days later, there's no discharge and it appears to be sealed. It looks kind of like a small bellybutton.

When I was changing the gauze this morning, Julia was gracious enough to let me snap some pics of The Hole, as we're referring to it.
Also notice the nice looking scar on the right side of her belly! I didn't want to force anyone, so for a closer-up shot, click here.

After a shower tonight, Amanda helped Julia style her hair. Her fauxhawk was awesomely cute!

Sunday, September 25, 2011

The Upcoming Scans

On Tuesday we'll be spending the day at Children's Hospital. Julia's got scans, PT, and hopefully taking her Mic-Key button out. I've been trying not to think about it too much, but over the last few weeks, that's been difficult. After the scan is over and we've gotten the good news, Amanda and I will be relieved and then we can start worrying about the next one.

We're hoping to make it through Tuesday without a hitch so that we can focus on our vacation coming up in a few weeks. Julia's Make-A-Wish trip is nearly upon us. We're all excited to head to Orlando for a week! We'll be meeting again with Julia's wish granters next weekend to get all of our final details squared away. We'll be staying at the Give Kids the World resort. It's equipped for those kids who aren't medically well enough to be out and about to be able to have a great time on-site. Since Julia doesn't fall into that category, we'll be able to visit all the nearby theme parks as well as enjoy the activities they offer.

Julia's hurt arm was mentioned in an earlier blog post. All seems fine with it - nothing broken and it isn't bothering her at all now.

She also got a nice compliment from her guitar instructor at this week's lesson. He could definitely see improvement.

The kids decided to build Skippy a fort earlier today. It ended up quite elaborate and this evening the dog actually crawled in and laid down in it. Here's a picture of the early stages.

Sunday, September 18, 2011

School Days, Strumming, and Splints

The kids started school a few weeks ago. That's right, even the little guy is getting in on the education action. Julia's in 2nd grade and Finn has started pre-school at UWRF. Things are going well so far.

After her birthday, Julia started taking guitar lessons. She was really excited about starting and she has her lesson once a week. She sometimes needs to be prodded to practice, but it's clear she's picking it up when she talks about what she's learned or showing the chords and notes she knows.

Julia went to a gymnastics birthday party on Saturday. She had a fun time until she fell off of a piece of equipment and hurt her arm by her elbow. After an hour or so, she was still in a lot of pain so Amanda took her to the ER. The x-ray looked negative for any breaks or fractures so she left in a splint and sling. She'll need to be seen in a few days and possibly x-rayed again to make sure it all looks ok. She hasn't had much pain at all today, so that's a good sign.

We're also staying plenty busy with dance classes, girl scouts, etc.

There would be more pictures of Finn, but he usually goes in the other direction if he knows the photo is being taken.

Monday, September 5, 2011

On Being Bald

There's no faulting a person for feeling self-conscious because of missing hair caused by chemotherapy. It is, after all, an unasked for change to someone's appearance that will draw stares and raise questions by peers and strangers.

That being said, the real meaning of the baldness ought to be thought about.

The falling out hair and later smooth skin is not a sign of cancer. It's a sign of the cancer being slowly killed off, cell by cell. It's a sign of a body stronger than the nuisance growing inside of it. It's a sign of tens of thousands of hours of creative and hardworking minds who studied, learned, and devised ways to destroy the parasite while leaving the host only temporarily weakened.

Hair? Please. Go ahead, take it. It'll grow back while the abnormal cells that decided to take a run at the whole of the body are long deceased, forgotten about, and their parts recycled back into other living things that agree to play by the rules.

Of course, the confidence of the preceding words is helpful to maintain a positive attitude during the worst of the worst. The fact is that sometimes the good guys don't win. But even in a loss, progress is made. Not only has the fallen inspired family, friends, and strangers, but the entire situation has brought people into the full spectrum of the human experience, of which, loss of life plays into it heavily for everyone who has ever lived. And all players in the game of fighting cancer are winners because they all become an all-important data point. One blurb of information in a file might sound like an insult to be a life's legacy, but I'm completely free of cynicism when I say that. Those tens of thousands of hours of work that bring hope were brought about by tens of thousands of those stricken with cancer - those who underwent treatment and battled through to whatever end was theirs. Good or bad, their end result made the lives of those who suffered and fought after them a little bit easier.

And as the treatments move toward producing less nasty side effects while still destroying the ceaselessly growing cells, here's to looking at a lack of hair for what it truly is: a sign of the battle being fought.