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8/7/05 PM

9:45 PM (Randall posting): As Susan suggested, it's been a quiet, normal weekend for us. It's certainly quieter than normal with Elisabeth at Oma's (pretty amazing, given how quiet Elisabeth is around most people, I know). Several people have commented on how much energy Sophie has. She clearly is feeling stronger than she has in a long time. I'll be curious to see how her counts are tomorrow afternoon. Surely by now her counts have rebounded and she's ready to begin the next phase of treatment.

Since our little friend Macie passed away, I have been acutely aware of how Sophie looks, how she's feeling, if she seems tired, etc. At this point, it's clear to us that the leukemia is no longer as serious a threat, but she is still vulnerable. Our desire to return to some sense of "normal" sometimes allows us to ignore or deny (?) the seriousness of Sophie's situation and her treatment. We have indeed been blessed that she has done so well, and we have every expectation that she will continue to do well and thrive, but I wonder if we will ever feel completely unthreatened by death or disease again.

I imagine that everyone who has ever battled cancer knows that it can recur, or pop up again somewhere else. Even when the prognosis is good (which it is for Sophie), there is always some nagging possibility that somewhere down the line the other shoe will drop, that something unexpected will happen. We never dwell on those possibilities, we rarely acknowledge them unless, like now, we feel like we must. This is the reality of our situation, and the reality of the situation for many, many other families.

I don't mean to sound down or morbid, because generally speaking I think we're optimistic and hopeful and not at all overwhelmed or overcome by our situation. There is, however, a nagging sense of dread, that quickly and easily pops up and begs to be dealt with, particularly when we've had a bad day, or when our defenses are down (or blown away).


Randall, part of the whole problem with children with serious or life threatening illness is that our society as a whole is so far removed from farm life that death is no longer a part of life. In our society the expectation is that our children will ALWAYS out live us. Reality is, that is not always the way life happens. Infants die before they are ever born, young children, teenagers, and young adults die from car crashes, self inflected injuries, as well as catastropic illness. Our society does not seem to believe that the world is broken and has been since Eden. Our society expects justice to occur this side of eternity, and praise the Lord, sometimes it does, but sometimes it doesn't. One thing my first job in nursing taught me was that life is fragile, somewhat akin to a raw egg at the precipce of a high hill. I don't know if you are aware that my first job in nursing was at Children's Hospital in Pittsburgh, PA on 4 Medical. That was a school age unit where at least 60 or more percent of the children had cancers of some kind or other chronic illness that would at some point claim their lives. AML is the reason I left - although you are not supposed to have "pets", I did. Tracy had a remission that lasted six weeks - not my idea of remission. When she died, I left and told them I would not be back until there was a cure. Needless to say, I found my nitch in advanced practice nursing in neonatal intensive care and not likely to ever return to school age medicine. However, even in the NICU, life is fragile for the infants, their families, as well as the staff. I will ask the Lord to give you peace and wisdom as you and He deal with your feelings of vulnerablity. He will walk with you through this journey - you and our whole family is on. I often ask the Lord to help me learn the lessons He has for me through all of this and the other stuff going on in my life - to help me learn it quickly so that these things will pass quickly as in quickly as I think of it. Not being a "process" person, these journeys sometimes can get to me as I expect they do to you from time to time.
I hope you had a fun date night. Maybe did something more exciting than walk through Lowes this time. Enjoy the time you have with each other and with Sophie while Elisabeth is away visiting. Take care. Hugs and kisses all around. Love, Eileen

Hello. I hope you had a great weekend. I know that you missed Elisabeth. I know she is having a good time. I can't beleive it is almost time for school to start again. I hope they are in the same class again - they really enjoy each other.

I was so hurt by the news of Macie. I have been keeping up with her since you guys first posted her web page. She was a precious and courageous child. My heart goes out to her family and I will keep them in my prayers. I have thought about you all too and how this must affect you. I understand how you feel and the fears you have. I have the same fears with Haley. Will it come back? What if the next MRI is not good? What if this is the start of something? I guess all we can do is have faith in God. Randall, when you came to visit us in the hospital when Haley was sick your word were such an inspiration to me. You said that your feet have yet to touch the ground since Sophie's illness that God has carried you through it all. Those words meant a lot to me and helped ease my pain and worries. Just know that God will continue to carry you throgh this. Take care and we hope to see you all soon. Laura