Lauren was up at CHLA yesterday getting her chemo. Since we had to meet with Dr. Finlay before they could administer the chemo (this is required once a month, to make sure Lauren is handling the chemo well and since Lauren needed her once-a-month dose of Pentamidine that helps prevent pneumonia and since Dr. Finlay wasn't available to see Lauren until after 12:30), we knew that this was going to be a long day.

To top it off, Lauren's portacath was clogged, meaning blood wasn't coming out of it. So that meant they couldn't draw her labs (blood), which is needed to verify her counts (white blood cells and platelets) were good, which is also another requirement before they administer the chemo, which caused further delay. So they had to give her medication to unclog her port which takes about an hour. So it wasn't until after 4:30 that she got her first of two bags of chemo (Avastin and Irinotecan/cpt-11). So once again, Lauren closed down the day hospital, it wasn't until almost 8 pm that Lauren was done with her chemo. She was the last patients to leave (most of the staff leaves around 5 pm).

While it might sound like I'm complaining, I'm really not. Having been getting treatment at CHLA for over a year, we've become good friends with a lot of the nurses there, which is easy to do when Lauren was getting her main treatment and we were at the Day Hospital 10+ hours a day 5 days a week. So it was nice that Nurse Danette, who was working in the clinic, came over to hang out with girls even though she was off. It was even nicer to hear that the girls (Lauren, Marissa, Hilary and granny) went out for dessert afterwards with Nurse Danette and Nurse Tina. Of course, that meant they didn't walk through the front door until almost 11 pm. Lauren who is usually up when I leave for work at 6 am, was sound a sleep.

This and that:

- Dr. Finlay is very pleased with how well Lauren is doing. He likes that the fact that we are slowly weaning Lauren off her Decadron. We're down to 3.5 mg a day. We'll lower it to 3 mg on Monday.

- We've been really fortunate with the treatment Lauren has been receiving, at least in regards to chemo, it's been state of the art. The high intense chemo treatment protocol with the three mini stem cell transplants that she was on in the beginning, is not going to be available (implemented) at other hospitals until 2012. I just heard through a friend on the East Coast, whose child goes to CHOP (Children's Hospital of Philadelphia) and is on the same protocol as Lauren (slight variation, she is on Temador 5 days a month vs. 5 days a week that Lauren is on), that the protocol our kids are on (Avastin and Irinotecan/cpt-11), has only been approved for adults. That only a few children's hospitals in the country are authorized/approved to administer this protocol to children. What this means is Lauren has been receiving cutting edge treatment. So once again we feel pretty fortunate that we're at CHLA.

- We are going camping down at San Onofre State Beach tomorrow with some friends (the McGowan's, Nurse Tina, the Tanita's, the Tochihara's, Uncle Mike and his woman Rainey). Looking forward to hanging out, relaxing, and doing some surf fishing. Weather doesn't look good though.

- Since I'm taking the day off tomorrow for camping, I'm looking forward to going to Lauren's physical therapy appointment in the morning. I hear this PT works her very hard and makes Lauren really sweat. It will be fun to watch.

- Lauren was re-evaluated by her physical therapist. The PT is recommending 6 more months of therapy. Lauren has shown a lot of improvements. Currently we are working with the way she walks down stairs. Normally when you go down stairs, your step is toe-to-heel, which Lauren does with her right foot, but her left foot goes plop, toe and heel at the same time. So we're working with her to go down toe-to-heel. We also have other exercises to get her left side, the weaker side, more involved.

- We are still waiting for her occupational therapy evaluation. Hopefully, this will help with the shaking in her left hand, which continues to shake uncontrollably when she tries to use it.

- Marissa is doing great after her incident with the melon ball getting caught in her throat, in fact she was asking for more watermelon right afterwards. I didn't know this until later since I was still unconscious and bleeding in the other room from my fall (and no I'm not being over dramatic like my cold, unsympathetic wife keeps telling me). We said no, we were done with watermelon for awhile. Meanwhile, my knee is at 65%. X-Rays were negative, only a lot of fluid. Still limping though.