Monday, August 21, 2006

Round two... ding...

Okay, so time to post continues to be scarce. Here's the latest, with pictures of course...

On August 9th, Sophie participated in a fundraiser for the long-term cancer survivor program at the Lombardi Center at GUH. A local Hundai dealer, Don Byers, donated a car to the Pediatric Cancer Foundation to raise awareness and funds for cancer research dedicated to the after affects of cancer treatments and the life that continues once treatment has ended. The car will be traveling along the east coast with an image of Sophie's handprint, along with her name and age. See the picture with the door the kid stamped with washable ink on-site that day, and a picture of the entire group. Hundai and the Foundation presented a check to the Center for $45k to cover expenses related to the first ever national conference on life after treatment. It was a joy to be a part of this important event!
Later that afternoon, Sophie got her first haircut - ever!!! Her beautiful long flaxen locks became an adorable little flippy cut that seemed to age her a full year. My heart melted a bit, but we got through it... with an envelope full of hair of course.

It seems the haircut was just in time! On Thursday, Sophie made counts again (her white blood cells were high enough to not be classified as neutropenic and the risk of infection was reduced). This enabled us to go to the Montgomery County Agricultural Fair on Sunday. It was a hot day, and just as we began to visit the animals, we noticed that Sophie's hair began to fall out. I was interested to read the reason for the hair loss for chemo patients. Apparently, the drugs target rapidly producing cells. This includes duplicating cancer cells as well as hair follicles. As the cells are unable to reproduce, the follicle temporarily shuts down and the hair just slips away. Her hair is quite a bit thinner with some visible bald spots at the crown, but she's still adorable!

Zach had a great time at the fair, completely oblivious to our emotions on the hair loss. Check out his antics. Soph didn't get to go on any rides, but she did win a prize at the duckie game!

In addition to the hair loss, her face has also begun to see the effect of the medication, primarily the steroids. Her cheeks are chubby as can be - again, adorable! I may be biased so see for yourself, I think you'll agree. The less adorable part of the steroids are changes in her sleeping and eating habits. She's a hyperactive junk-food junkie right now. She's sworn off decent sleep, that is no reasonable nap, and she wakes up in the middle of the night, sometimes for a few hours. It's almost like having new born again, except when I bring Sophie to bed now, she flails around much more (and there's much more of her to do so) and beats be about the neck and shoulders with her feet. Daddy gets all the cuddly love and I get bruises! (That's okay, Zach cuddles with me while trying for a TKO with Dad, so we're kinda even on that front). Those girls love their Daddies don't they?

So last Thursday, August 17, Sophie had her second cycle of chemo. Cyclophosphamide, Doxorubicin, and Carboplatin ( It's kinda freaky that I was able to jot those down here without looking, including the spelling - yikes!). This was supposed to be a tough round as the drugs were administered in succession over about 4 hours. As is becoming usual though, Sophie woke up the next morning dancing and singing to Blues Clues. She did so well we're able to go home early in the afternoon. We only needed to make one stop... to pick up an anti-nausea medication at the pharmacy. The hospital called it in, so it should have take 10 minutes or so and we'd be on our merry way, right? Wrong! First the pharmacy had it in a holding pattern, so when we arrived they actually had to look for it on the computer, then we found that it needed prior approval from our insurance. Well I was worried that the medication Soph was given by IV in the hospital would wear off and we'd have one sick kiddie on our hands, so I said I would pay for it and work out the details later. Well, it seems that 30 of these little pills were going to cost us $930 - HOLY COW! So NOT doing that. We ended up with 3 pills at $105 to get us through the weekend. Everything doctor, insurance company and the pharmacy finally aligned and all is well now. We're literally set for the year in anti-nausea meds!

Sophie begins her new day care last week. These folks are great. It will be difficult not going the Bright Horizons anymore (Zach's last day was last Wednesday), but we have faith that once this is over Sophie will be able to return to BH and her favorite teachers. Sophie can and will stay at the new center until her central line is removed. At least six months, but up to twelve. She's part time now, but hopefully we can begin transitioning to full time soon and I can get back to work at some point.

Next on the blogging agenda is Zach approaching Kindergarten. We had orientation this past Friday with his new teacher Mrs. Nguyen - tomorrow's the big day!!! Stay tuned!

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