Saturday, September 27, 2008
This past week in Memphis
My youngest sister Sarah was here to help. Kevin really loved having her here and insisted on sharing her room while she was here. It was really very cute. You could tell he has really missed her. Scotty was very upset about missing a week with Aunt Sarah and upon his return reminded me again that he missed out because he had to go back to Michigan, which he is not at all happy about. "Mommy, I only had one day with Aunt Sarah, Kevin got more!" is what I heard this evening when putting him to bed. Maybe Aunt Sarah can make it up to him...(hint, hint little sis! Aren't you glad you are so loved?)
I am now on my own during the week as I think we have exasperated everyone with at least one trip, if not more, to Memphis to help me with Kevin and Jake. They have taken Kevin off of TPN (basically nutrition through a tube) which makes my evenings a little more manageable since it is just me now with the exception on the weekends, but Kevin lost one whole pound within the first 24 hours we stopped the TPN. So if that downward trend continues we may end up back on TPN. We are trying to get him to take his meds orally now instead of through his line.
I haven't been even remotely capable of keeping track of how much our travel and living in Memphis costs have been the last 9 months, but after discussing it with Mike tonight I am sure that figure is well over $30,000. The fund does not cover any loss of income Mike, myself nor Eric have endured because of this terrible cancer and with things getting tighter - it feels like each day - we really appreciate having the fund that has kept our family together over the last 9 almost 10 months. It has kept me somewhat sane as I have not had to deal with Kevin's chemo treatments and infections - with a newborn baby in tow - all on my own, far away from help of friends and family, and without this fund I would have. I know having the family around Kevin has helped him deal with all of the horrors of treatment in the security of knowing his family was around him, going through it with him, that he had a team of family who loves and cares for him. I am sure if you ask almost any St. Jude mom they feel like they are living on the edge. I don't think I will ever view life the same again. I feel like God has removed his sheltering arms and let me see the dark side of life, but please don't think that I also don't see the blessings. When nature sent us to a very dark side of life, we also got a glimspe of the good side of humanity. I am amazed and humbled by all of those who reached out to lift us all up. So THANK YOU, THANK YOU, THANK YOU!