Monday, October 20, 2008

Interim Maintenance!

Again, sorry for the delay… Rogan has been feeling so well that we have been spending every free moment with her and enjoying it to it’s fullest. "Filling the canteen" so to speak, before she is scheduled to get the aggressive chemo again and predicted to get sick again. She is back walking and able to get in trouble again. She has so much fun and is so wild at times, that Mom thinks she may have eaten a few coffee beans that have fallen on the floor. She began her 3rd course of chemotherapy this past Monday, 10/13. It is called Interim Maintenance, and it will last 8 weeks.
_She will receive 2 different chemo drugs intravenously on each clinic visit and no chemo drugs orally, from home! [there’s no reasoning with her to eat bitter chemo pills lightly sprinkled over her delicious vanilla yogurt; regardless of the presentation.] I believe that they will be ramping up the IV doses on each clinic day, based on the side effects she experiences and if her blood counts can maintain a sufficient level.
_she will not need to get the spinal tap until 3 weeks from now
_bone marrow aspirate will not be until 3 weeks, as well.
Some slight side effects from Monday’s clinic are now manifesting, combined with some fresh teeth… resulting in some sporadic meltdowns and sleepless nights. Her blood counts are predicted to fluctuate during this course, and should drop again, when she gets into the 4th course; Delayed Intensification… where they will hit it hard once more… and she will see the dreaded steroid again. : (
… here’s a good photo from her last spinal tap a couple of weeks ago:


THANK YOU, THANK YOU, THANK YOU to Jamie Leachman, Teddy Sears and Tanner Campbell for spear heading the hugely successful fundraising effort for our family. Words cannot express our gratitude to EVERYONE that contributed… especially in the midst of theses wild economic conditions. [vote & buy American!] SO, THANK YOU. The bills associated with Rogan’s treatment are mounting fast, and what you all have done for us has most certainly lessened the pressure for one of our biggest expenditures!... organic Kale and Spinach smoothies now flowing like water! Rogan loved this one so much, that she let her whole face enjoy it… then she got sad that her hands were messy.


It is wild to witness your child grow up so quickly before your eyes. She is learning and progressing so fast… and testing the boundaries every step of the way. I think she reached her terrible 2’s a little early. The social worker at clinic said that “now is not the time for harsh discipline and that studies have shown that it can have a long term effect on their psyche”. She also told us to put Rogan in a quite spot, walk away and count to 10 and take deep breaths… and “never to hit an immune compromised child”. Darn it… I guess Rogan’s regularly scheduled beatings will have to come to a stop. [joke] … put it this way, Rogan is hands-down the most spoiled kid on earth, and we are proud of it.

With her blood counts relatively high and in a safer zone this past month; we have been able to get her out for a few adventures and some all too healthy social interaction. We made the trek down to Southern Utah to see Papa and Grammers. She enjoyed extra full days on plush carpeted floors, tractor [bee beets] rides and nature walk-abouts.


Rogan was even able to make an appearance at her cousins Avery & Talon’s house for a Halloween bash. Her and Coco went as Ninjas. She romped with her cousins, painted pumpkins [pund-kids] and had a laugh with the dogs.

Last week Nana took her to the pumpkin patch and she had a blast with all the ghosts and ghouls… she called them “guys”. Everyone got to pick a pumpkin to take home and she choose the scrawniest, most mangled gourd I’ve ever seen. I was scared of it when she brought it home. My friend said, “not to stifle her creativity”…


Here’s a shot of Rogan manning a display mower on a recent trip to Home Depot. She yelled “bee beets” a dozen times... nearly had a stage 9 meltdown and her wish, was my command.


Rogan disappeared for 2 minutes, the house went quite and she surfaced from the bathroom looking like this. I was able to snap this pic just after I had a mild heart attack and just before I sanitized her from head to toe.


Rogan adores Coco and there is not an ounce of jealousy… well, maybe at 3 AM when whoever cries the hardest wins Mom.


Thanks again to all who are thinking of us. We are forever grateful for the continued love and support.