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