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Posted by Laura Tubo (24.123.1.246) on 23:45:59 24/08/04
Today was rough for Joey. He was basically running from both ends--that's the best way I could put it. He is not eating by mouth. And, the mouthcare is brutal. The worst part is....this isn't the worst part. Tomorrow, we will get his stem cells. They call it Day Zero. From now on, we will count the + days of life. My strength seems to come through in these updates---but, really I only have strong moments--not strong days. Tonight's mouthcare was too much for me. By eleven o'clock, we only accomplished one of the three 15 second swishes. I tried every trick in the book. What finally got to me was Joey with his head on the pillow whispering to himself, "I can do this. I can do this." The reality of how strong HE must be is too much for me at times. He told me, "You can't quit, because you said Tubos don't quit. And, if you quit, who will be my Mommy?" My strength came back at that moment, and I found a way to finish the important swish. He promptly threw it up at me, but we tried. Anyway, we will get three more chances tomorrow!! Yippeee. I am trying to be vigilant about the mouth care. I met another parent of a neuroblastoma child across the hall. She received her stem cells last week. She is deep into the mucousitis, and confirms that it is every bit as bad as they say. I am hoping to decrease it if possible. On the homefront, Jeff got Gina off to school for the first day. My mom came over and took pictures and did the hair. So, for one day, she looked great. She reported that the other first grade class plays games all day. I asked her how she knew it and she said that everytime she looked over to that room, they were playing games. She did find a few friends in her class, thank God. Her two best friends are in the other class. I know she will be ok. I just wish I were there, too. Aunt Lori is set to bring her here this weekend. Jeff will again manage here. Please pray for quick engraftment of Joey's cells. I'll update again tomorrow with the day's events. Love to all.
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