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Posted by Laura Tubo (68.76.177.105) on 23:50:13 07/10/04
It is late and I must be brief. It was a day of highs and lows for me. We went back to the hospital today to have a check of Joey's counts in advance of our radiology/oncology consult. On the way there, we had to drive through for a cheeseburger, ketchup only. It seems to do the trick for Joey when we need more "points" (calories) for the day. So, as we were in the line waiting for our turn, Joey noticed some helium balloons outside of Wagler Home Store. One came loose as he watched and he said, "Look Mommy, that balloon is going all the way up to heaven!" These zingers get me just like they get all of you. Still, we were surely appreciating the beautiful day...At the clinic, we learned that Joey's ANC was 2100! Hallelujah!!!! This was the high for the day. In fact, this was the high for the past few months. We are finally seeing some decent numbers! If we remain at that level for 3 days, we can stop the nightly IV of GCSF medicine, which boosts the white blood cells. Once we stop, it would not be unusual for the counts to drop slightly. Next, we headed to the radiation visit. Everyone there was wonderful. We even met a guy who is famous for his Spidey collection. He gave Joey some cards and promised more prizes when he returns for treatments. Joey felt comfortable there. The low is mainly in MY heart, not his. On the way home, he said, "Mom, there's nothing better than no sickness!" I had to ask him to tell me again to update all of you so I could remember just how he said it. This was so important to me. By this statement, I know how well he is actually feeling. I often wonder what level of pain he was living with prior to February. It is hard for me to press on to the next step-radiation-knowing how well he is feeling. There was some discussion as well as to where to radiate. It will be in the primary tumor bed--but, it may also be in his skull. I don't have near the amount of anxiety I had going into transplant---but, the idea of radiating his head/brain just IN CASE there is residual disease makes me uneasy. I pray for guidance and strength in the weeks ahead. I pray for wisdom in his treating physicians. I pray in thanksgiving for how far we have come. Mainly, I PRAY. And, I am asking all of you to continue to pray with us for Joey's permanent healing. Well, have to try to get some Z's. Did I say I was going to be brief? There is no short way to speak of my special son. Thanks for listening....
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