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!

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 . . . .

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.

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!

Maintenance

This past Thursday Eden finally reached the ultimate goal of “Maintenance.” This has been the day we have anticipated since Eden was diagnosed over 8 months ago. For our family this means returning to some more normal social activities . . . maybe (we have been warned that cold and flu season is here.) This Maintenance phase is an 84 day cycle that will repeat itself until the spring of 2011. During these phases she will receive 1 lumbar puncture with chemo, chemo via her port once a month, the dreaded steroids, chemo nightly and a new chemo that she will take only once a week. Although she will be receiving oral chemo daily we will only be at the clinic once every 4 weeks. Of course any fevers will require a trip to hospital (hence our continued germ precautions).

The past several months Eden has spent much of her time administering chemo to her babies, giving lumbar punctures, giving us medicine, ordering CBC and the list goes on and on. At times we have enjoyed hearing her insight on the procedures or what she thinks happened to her hair and then there are the moments this role play brings us to tears as no child should have this as their childhood. The weeks without chemo have been excellent and we have noticed big changes . . . she is awakened in the night questioning why daddy took the M&Ms outside, instead of screaming “no pokes.” Note: M&Ms have only been a potty training motivator and not a new craving. Today she spent some time pretending to “dance like a princess”, holding her dress up with her right hand and me twirling her around with the other, such a normal activity. As I think about it I did dress her in a dress today without tears. I always dress her for the clinic in dresses as it seems to hide some of the tubes hanging from her port and the last few months I have had to reassure her that we were not going to the clinic.

We must thank all of you for your prayers regarding Thursday’s treatment. Eden had a Lumbar Puncture and it went so much better than the last three have. The combination of meds was ideal as she did not remember the procedure which is so much better than the past as we have had to hold a very alert girl in a fetal position. The nurses are very accommodating as they even gave her the seasonal flu shot while she was sedated. When she was back in my arms she asked me “mommy, why am I in this room?” So much easier to explain than why they gave you a poke in your back.

Shirt off His Back

During the last 8 months we have witnessed the generosity of so many of you as you have helped us in our practical needs and carried us through in prayers. A story was shared with us about a friend who gave the “shirt off his back” to support the cause of fighting cancer. Last Saturday, Jack Trice Stadium was filled with “Beat Cancer” t-shirts. A good friend of ours was asked about his cardinal and gold “Beat Cancer” shirt. The women liked the shirt so much that our friend gave his shirt that he was wearing and asked her to go online to Beat Cancer Today and donate $10. We would have loved to have been at the tailgate to see him return shirtless! Thanks to all of you that supported Eden by wearing “Beat Cancer” shirts. Although the outcome of the game was disappointing (to ISU fans) the shirt sales was a success and with all the proceeds going to Cure Search - we feel it was a big win.

Tuesday brought us to our local hospital for Eden’s weekly labs, and the results were . . . disappointing. Once again, her neutrophil count had fallen, keeping her at a high risk for infections. The only encouragement from these results was that the lethargic and inconsolable behaviors were justified with low counts. After calls to Eden’s medical team in Iowa City, our request to have Eden seen was granted. Wednesday we met with Eden’s Drs to discuss our concerns. They were comfortable with her low counts and were confident that the low grade temperature, increased sleep and temperamental attitude were related to the chemo that she had received more than a month ago. We trust our Drs but were a bit more apprehensive as the toddler living at our house was not our little Eden. We recommended a few more tests and a couple were ordered. A call from our Dr that afternoon affirmed that her labs were okay and that Eden was still rebounding from her intense rounds of chemo. Thursday afternoon I received another call from Eden’s Oncologist. . . a bacterial infection had grown in Eden’s culture. An antibiotic was ordered and we will be combating this infection at home. We were relieved as we really believed there was something wrong with our little girl but we are her parents not her Drs.

This morning has started out quite “normal”. Later today we’ll be outside enjoying the wonderful weather.

Also, a HUGE thanks to all of those who participated in the Sabula Trail Ride last weekend and a special thanks to Don, Deb, Emily and Amy Warner. Your generosity is very much appreciated.

Glimpses of normalacy?

Glimpses of normalacy? The last day Eden received chemo was August 25th. We have spent our time since that day waiting and anticipating her levels to rebound. Labs from last week indicated that she had rebounded. We celebrated by enjoying some normal activities, lunch with friends, play dates and her first trip to a public park. Although Eden was thrilled with the outings I think Kurt and I were even more excited to see Eden enjoying toddler activities. This week’s trip to Dr Dave’s hospital (our local hospital) resulted in disappointing results. Her labs that were normal last week were not only low but indicated she was neutropenic and therefore results in extra precautions to keep her in areas of minimal germs. A call to the hospital regarding these numbers leaves us with only more questions . . . So we ask for your prayers that her weekly labs on Tuesday will show our anticipated results. If her levels show that they are recovering she will start her next phase of maintenance on Wednesday. Maintenance will be a combination of chemo via her port, lumbar punctures (chemo via her spine), nightly chemo at home and 5 days a month of steroids.

We have so much to be thankful for over the last 8 months. Today I am thanking God for all our friends and family that have carried us through.

Love