Friday, October 30, 2009

This Week in Pictures


Bubbles with Alysse and Taylor. We met Alysee during our
first hospital admission . . . needless to say Eden was not as
enjoyable during their first meeting. Thanks Alysee for being
so understanding!


Megan introducing Eden to Herky and Perky! We love
Megan regardless of the Herky influence!


Megan and Taylor learning some new moves from Eden.
We had the best night watching our little girl with a smile
all night. Thanks DM!








Wednesday, October 28, 2009

100 days to DM

Tonight we broke our cardinal rule - mom, Eden and I attended a public event. It was a Dance Marathon event on campus at the University of Iowa. The event was to highlight that there is only 100 days to the upcoming main event for Dance Marathon (on Feb 5&6). We thought it would be okay to bring her out, since her counts have been pretty good, and we wanted to support the organization that has supported our family (and many others) so much and in so many ways since Jan 14th, 2009. Eden had an absolute blast tonight. The night started off with some crafts, then she met Herky, enjoyed the LOUD music in a ballroom atmosphere, watched the dancers dance, and got to spend some quality time with a few of our "regulars" from dance marathon. These same "regulars" have frequently spend time with Eden while we were on one of our long terms stays at the hospital.

One of the highlights tonight was that they introduced several of the cancer families that were present by having us walk across an elevated stage in front of all the dancers, and we were introduced. I wasn't sure how she'd do, being the absolute center of attention, with the big spot light blaring down on the stage. She did better than I hoped!!! Not only did she go up and onto the stage, but she was the very first of us onto the stage!! She blew kisses to the crowd, waved her arms, and did a little spin around dance - and the crowd of student dancers responded with loug cheers for her. Selena and I couldn't have been prouder of her. After our minute on stage was over, she rejoined a couple of our dancer friends (she actually asked that mom and dad stay back)!! So we did. Eden and two of our friends from dance marathon danced, and ran back and forth on the dance floor, pausing every 30 feet or so to lay down flat on the floor, then get up quickly to resume their run. (It reminded me of drills we did during 2-a-days to get into shape). Apparently it had that effect on all three of the girls, as they were all red cheeked and worn out. When it was time to go, Eden showed us her displeasure. She asked if she could "just stay".


After sleeping most of the way home, we changed her and gave her one of two oral chemos for the night. After the first chemo she took, we told her needed to take the pepcid too "to keep your tummy from hurting", we told her. She asked "does it hurt??" I said "well, we don't want it to hurt, so we're giving you this meddy". She said "does it have cancer in it?" I said "no, but you take lots of meddy's to kill the cancer". She looked me in the eyes, paused and said "yeah, we're killing cancer". I said "yep - and you're doing a great job". She rolled over and was asleep within minutes.

It's days like this one that make the stinky days seem like a distant memory. Thanks Dance Marathon!!!

We will be adding pictures so please check back . . . .

Monday, October 26, 2009

Is warm weather coming back??

Eden's hair is coming in nicely. It's completely covered her head, and appears to be red again. Just this evening, we were talking about her hair coming back and that she'll soon be able to put bows in - her facial expressions lit up! Seeing her expressions like that can turn a bad day into a great day in just seconds. Just a couple minutes later, Eden was standing behind mom on the couch, flipping mom's ponytail across her (Eden's) face....you could just tell she's ready for her own hair to come back.

Eden has been doing very well lately. Her counts have been good enough that the Dr's have her on 100% chemo (meaning they don't have to scale the chemo back due to low counts). We're very thankful that she has not been sick thus far into the cold & flu season.

Eden was able to pick out a pumpkin over the weekend - it was funny, she picked out the scrawniest little pumpkin in the whole works - I decided she felt sorry for it. We were able to convince her to take one without quite so many deformities (so it at least resembles a pumpkin).

Over this past weekend, mom was going out to rake some leaves and Eden decided she needed to help - so off to the hardware store we went. Back home we went after we found just the right color and size (purple & pink slashes/small in size). We all ended up raking - mom and I that is. Eden's new rake ended up holding leaves down as the little girl waded through leaf piles picking her spot amongst the tarped leaves awaiting a ride to the street where the leaves are dumped for the fall pickup. Life is good!

Thanks for checking in on Eden. Please continue to pray for a healthy flu season.

Saturday, October 17, 2009

Enjoying these days!!!!

Eden is doing fabulous! Sometimes I feel that we are just anticipating some sort of illness or bump in the road but this is day 24 of her first maintenance cycle and we are enjoying our healthy little girl. The chemo Eden is receiving at home is well tolerated and thankfully she takes it with ease. Wednesdays are still marked on our calendar as Eden receives an additional chemo along with her nightly chemo; the combination seems to take some of the sparkle from her eyes for a couple days. Thankfully the sparkle always returns.

Eden’s gross motor skills are improving as she can now go down our 2 stairs without dropping to her knees to crawl down. Her running is now able to be differentiated from her walk. She is far from setting any records but it is so encouraging to see her develop some normal toddler skills or regain what she had lost. These delays are related to the Leukemia (causing the severe pain in her legs), Vincristine (one of the many chemos causing leg pain) and her body weight increasing by 20% in a few weeks. The change in her chemo regimen has allowed her hair to return her little head is now covered with about ½ inch of hair (color to be determined later . . . I am still praying for the same red curls).

Cancer has changed our life forever and it continues to affect the lives of so many that we love. Please keep those in your prayers. A big praise and the most exciting news is from my dear friend Trisha she is celebrating 4 years cancer free!